I was just diagnosed last fall at 44. I am a woman. It does not just affect men. Women are just constantly misdiagnosed with “fibromyalgia.” I have had it since my 20’s possibly late teens. This disease has sucked the life out of me. I am also negative for the gene. I hope this video is true.
@@ItsJustMe-nq1dg I’m on Cosentyx now so that helps a lot. Flares are not as bad or as long now and it has reduced the inflammation in my SI joints. Funny thing is they didn’t even consider AS for me until my son was diagnosed at age 15 and they read we had family history. My son and I are both HLA B27 positive and my brother has psoriatic arthritis. How are you doing? Hope you’re getting some relief.
Thank you for reporting hope. I think of the many advances in knowledge and less invasive surgeries over the last 10 years and look forward to more progress for spine/arthritis patients.
I was diagnosed at 18 had to drop out of college (hotel management) because of the pain, doctors told me to exercise but it just got verse took lots of NSAIDS, steroids, painkillers but everything was temporary, after a few years of medication i decided i can't do it anymore. I am almost 25 now and off medication from a year. I have difficulty getting in and out of bed, sitting and standing and performing daily tasks. Figuring out a career is impossible! What's worse is that even your friends, relatives and sometimes even parents don't really understand the pain and just think you are lazy and that is why you have mobility issues cause you didn't exercise. Sneezing is a death sentence. So trust me when i say TAKE MY MONEY WE NEED THIS CURE ASAP!!!!
I have the same kind of experience mentally and physically. Its been 6years now, I am 28. My parents also thinks I am lazy and don't like exercise. Planned for a total hip replacement next month. Hope this medicine comes to market fast.
Similar to you. Back spine specialist told my parents when i was 20 i was lazy and bad attitude. Then father kicked me out of house. My friends vanished like the mist on a hot day. Due to poverty i had malnutrition. Somehow still alive, but dont know why. Peyote cactus does help make my body feel better for a while. Goodluck.
Hi, my daughter has AS. We tried hypernourishment and she is now 80% recovery after only 4 months. Pls search dr goldberg hypernourishment on youtube. I hope this helps you too!!
Try eating only beef with salt and water and some electrolytes. This has helped me keep my flare-ups down to 3 weeks. I just had a painful flareup that came after eating grains so now I'm convinced to stop eating all grains even rice
@@adc_15 It did! Basically removed 90% of my pain, maybe more. I still have occasional flair ups but it’s few and fair between. I also mitigate my symptoms through diet though so I am low to no dairy and I exercise regularly. Turns out the humira patent expired so they’re are cheaper alternatives that are basically the same as humira. I highly recommend them. I’ve been on humira for 8 years now and had a very severe case of AS before starting. 8 years later and I have zero signs of fusion.
Great to know there's progress in this area. I'm 40 and I have been suffering for half of my life now with AS. Not even sure if this discovery will mean anything for the poor as treatments for AS have proven to be so expensive. Been surviving on painkillers. Nonetheless, we are grateful for the discovery.
Female 63 had it for over 30yrs , misdiagnosed for many yrs , unfortunately I can't take Meds . Limited diet as I've found a lot of foods makes it flare up. Good luck to all out there ..I feel your pain.
@@mrbeastzone1 carnivore...once you get over carb withdrawal the pain disappeared..and I hate meat but it's worth it to be mostly pain free..haven't solved the migraines altogether but Dr is so happy he just said keep doing whatever your doing.
@@Ivv93 follow Dr Ken Berry he can explain it better than me ,I hate meat and have always hated it , I struggle but to be pain free is worth it .I like my meat cold but I watch others on youtube for ideas , hope you find relief.
im 26....have AS for atleast 9years....been on simponi..on jakinh initors....pain in other areas controlled but constantand severe pain in waist region ....i cant continue for long like this ..hope something comes up..but as soon as i hear russian doctors, my trust level swoops down
63 Years YOUNG here, misdiagnosed SINCE 1997- until 2002 met a surgeon he mind was BLOWNED, I've only read about it, AND YOU HAVE IT! I'M completely FUSED, "0" movement in neck "0" in spine. use my back for your bar. Had my left shoulder rebuilt, and both knees replaced, feel it moving into my left hip. I'll take this IV TODAY! HOOK ME UP^
I like this man of russian bear appearance. He says that he is a doctor, not specifying MD nor other type. But he is not wearing white lab coat, nor stethoscope, nor putting up airs. He is onto something. There are still good people in this world.
Hey bro/Dr.. heres to new hope 🙏🏼 Had AS since 25ish Surfing carrer cancelled early 😭 full hip replacement at 37. 47 now tried Simpini, embrel and past 10+yrs stable on Humira 40, 2 weekly injections 💉 stable but anoying constant pains in the kneez, hip and ankle joints! Ill be following you for further info. Thanks mate 😎stay kool!
I’m also 47 diagnosed with AS around 38, but had small symptoms since my teens. I’ve had total hip done in 2018, but left hip gives pain still in the front of hip, and can’t walk without a cane. Spine or head are all frozen in a forward posture. By the time I was offered Humira I was already frozen, so being unsure about the risk vs benefit, I stayed untreated. Did Humira keep you from getting rigid curved spine? Does it take away stiffness and help with range of motion? And do you have the hlab27? I was neg. Thanx for any feedback my fellow AS Warrior ~ an ankylo bro
Thank you for sharing and bringing this info and recognition. THIS DISEASE AFFECTS WOMEN. I have it. It also starts earlier than in your 20's, unfortunately. Most report feeling pain as children or adolescents. but THANK YOU so much for putting this on our radar. Much love
I want this treatment asap. Im ready to give everything . Please take my pain away. All my friends are hanging out and im just unable to walk . Im only 20
Same here I'm 28 all my friends are working nice jobs 1 even bought as house recently and I'm here disabled unemployed. Hopefully this develops quickly.
Amazing 🤩 Thank you 🙏🏻 I suffer from a variation of Ankylosing Spondylitis: Seronegative Non-Radiographic Axial Spondyloarthritis (although it’s finally showing in MRIs). It’s been soooooo painful for over 30 years now, and since there is the misconception that it’s a “male only” disease, it took forever to get me diagnosed, just about a year ago (after suffering excruciating back pain and neurological symptoms, as well as vertebral fractures, for 3 decades!) I’ll definitely talk to my rheumatologist, immunologist, neurosurgeon and neurologist about this. My nrxAxSpa has advanced way too fast in this past year especially. Nothing seems to help my symptoms or the progression of damage to my spine.
I appreciate your comment. It took me 15-20 years to get diagnosed. I was just diagnosed at 44 yo, last fall. I asked a rheumatologist about it about 15 years ago and was told it was a man’s disease. 🙄 Yet, here I am a 45 yo woman with AS. Are you on a biologic at all? Good luck to you and I hope your didn’t progress. 😢
That must have been so frustrating. I am so with you! Hang in there. We could be one little step away from someone figuring this out and ending this nightmare for you. There's nothing good about suffering but it does make you strong. You've got this. I am wishing continued strength, good sleep, and nurturing food for you. PS. If you are not on an anti-inflammatory diet you definitely should try it.
Thank you Dr. For this great video. I have been on Enbrel and then Humira for almost 15 years now. And recently my insurance company took off Humira from their supported medication. I have tried so many things like naturopathic, homeopathic, massive lifestyle changes, and nothing seems to work besides the biologics. Really glad to hear that there maybe new hope in the horizon.
Oh my goodness hang in there. 10 years is a long time to be dealing with this. I’m so glad you do get results from the biological treatments. And I’m really hoping that this new treatment is going to work for you too. Please let me know if you get it.
I'm also victim of ank loosing spondylitis, I was diagnosed since 2020 I guess , but I feel lot of pain i was in death bed for like 1 year, after I check hlba27 it was positive, before hitting ankloosing spondylitis I was a gym lover i was taking protein natural as well as powder after diagnosing spondylitis I reduced like 10 kg, now I am ok I took like 20 adilumulab injection now I am good i feel i am normal person.. I can hit the chest pressing gym like 80 kgs legs scots above 100kg n I can play cricket tooo n can run like normal person do
Hi !! Can I get in touch with you as I am undergoing pain in AS. Can I get your email id or any other mode to reach you out to learn the medications that you used earlier. It would be a great help. Thank you
Oh, no. I'm so sorry to hear that. I'm sorry for your loss. The death of a child is so devastating. I always think that it's the wound that does not heal. As a neurosurgeon I once stood by the bed of a comatose patient as the last rights were delivered. There was nothing I could do, and it was time to turn off the life support on a young man who was badly injured in a car accident. I stood by the bed and held hands with family members. I felt so angry that I wasn't able to help him. Not only angry, but frustrated to the point of shame. It was my job to save people like this. Then priest said "The doctors, they do what they can..." And I knew in my heart it was true. I felt some relief. As a mother you did what you could. And you are not alone... the medical profession is working day and night to come up with better treatments for this terrible disease. But it wasn't enough. Your son's life ended in tragedy, but you are not the cause. One day we will have something better. In the meantime, I hope you can remember him in the good times. May his memory be a blessing for us all.
I’m a 25yr old female have had it for 6yrs if not more and was diagnosed 2yrs ago by an autoimmune doctor after my doctors were neglecting my complaints
I spend most of my life in bed. It’s not only morning! It’s all day! I can’t stand up more than 10 minutes and I start to cry. My spine is fused together and I had a pain doctor with a good sense of humor, tell me about 10 years ago, that my spine was “disgusting”! I already knew that. My rheumatologist diagnosed me, but there’s nothing they can do!
@@nehneh5488 Quit sugar immediately, try an alcohol based sweetener instead, reduce carbs as much as possible. And try Reishi mushroom, make it into a tea, twice a day strong dose for 4 days and see if it reduces the pain, continue if it does.
Hello Dr. I’m Aliy I am from Uzbekistan which is located in the central Asia. I have AS and it hursts a lot. Can doctors find a way in the future for AS. Can i hope Dr. Please share a next video related AS’s cure🙏🏻thanks in advance.
Can you do an update on this? There is a drug, BCD-180 that is in clinical trials now, one in phase 2, and one in phase 3. BioCad is developing it. This is very hopeful!
@@MrsRabbit8 not just subscriber man i want anyone in the world with as to hear that and praying for biocad success i think they are so close hope they find the way and wishing it to be affordable for everyone
Doctor, I have a friend of mine who is 35 years old and has stiffness in the spine. Can he get treatment? I am from Libya and the specialists in Libya told us the success rate of the operation is 0. Is this true?
Requesting you to make new video on any new update of same medicine you mentioned in video. Pls do the needful 🙏 I am suffering from it from last one decade. Hope and i always pray to god that one day there will be ultimate solution to this problem.
We need more doctor like person in this world. Who share the data about this kind of disease. Sir I am suffering from Ankylosing spondylitis since more than 5 years. Currently I'm on biologics injection Intacept 50mg. Find little bit relief with this expensive injection but still not completely free. This disease literally break you from inside. Sir Im from India and very few doctors knows about it. If possible please discuss this new treatment with indian rheumatology association.🙏
It sounds like you are on Etanercept (Enbrel) for your AS, right? Biologic medications like Enbrel are not a cure, but they have significantly improved the treatment landscape for ankylosing spondylitis (AS). These medications work by targeting specific components of the immune system to reduce inflammation and slow disease progression. Enbrel is a TNF Inhibitors. These drugs block tumor necrosis factor (TNF), a substance in the body that causes inflammation. There are several other drugs in this class: Adalimumab (Humira) Certolizumab Pegol (Cimzia) Etanercept (Enbrel) Golimumab (Simponi) Infliximab (Remicade) There are other classes of drugs. IL-17 Inhibitors: These inhibit interleukin-17 (IL-17), a protein that plays a role in inflammation. Secukinumab (Cosentyx) Ixekizumab (Taltz) JAK Inhibitors: Janus kinase (JAK) inhibitors are a newer class of medication that can be used for AS, targeting the JAK pathways involved in the body’s immune response. Tofacitinib (Xeljanz) - Note that JAK inhibitors are typically used when patients haven't responded well to TNF or IL-17 inhibitors. IL-12/23 Inhibitor: These target interleukin-12 and interleukin-23, another set of proteins involved in inflammatory processes. Ustekinumab (Stelara) - While primarily used for other conditions, it may be considered in certain cases of AS. A biologic medication depends on several factors, including the severity of the disease, the presence of other medical conditions, patient preferences, and insurance coverage. Each of these medications has its own risk and benefit profile, which must be considered and discussed with a healthcare provider. Regular monitoring and follow-ups are crucial when on biologic therapy, as these medications can have side effects and may increase the risk of infections. Your healthcare provider will guide you in choosing the most appropriate treatment based on your specific condition and health history. Hang in there! Its a lot for anyone to manage. I'm sending you best wishes and hope for a better year.
Great work providing these series of videos that provide an outstanding resource for those in pain. Do you plan on continuing your one on one reviews of MRIs/XRAYs? I remain very interested in doing one with you. If you are still doing these, what is the process for requesting one? Thank you very much!
Thanks for your information, Dr. It brings hope to AS patients, including its close relatives. My son suffered severe pain and injuries since he was 16. Until he was 18 he was diagnosed with AS. He started a treatment based on Cosentix (Secukinumab). One injection per month. The results has been amazing. No pain anymore since then. I, as his father, always wonder if he will be all of his life depending on this drug. Your information results very valuable and hopeful for me. I already shared with our reumathologist , including the original paper of Nature magazine. Thanks a lot! PS we are Mexicans and live in Mexico. Here the availability of new drugs usually delay 2-3 years after you have them in the US. Despite that, Cosentix here in the country is a common treatment for AS and is having very good results.
Thank you for sharing your son's experience with Secukinumab for his ankylosing spondylitis. As you know, the FDA has approved updates to the labeling of secukinumab, allowing for an up-titration to a 300 mg dose for adults with active ankylosing spondylitis. This change is based on results from the MEASURE 3 study, which demonstrated better efficacy at the 300 mg dose compared to the standard 150 mg, especially in patients previously treated with anti-TNF therapies. This dosing flexibility aims to optimize treatment response and symptom relief in patients (Novartis) (HCP Live). I don't have enough expertise to know whether your sone will need it for life. The MEASURE 1 and MEASURE 2 studies, published in the New England Journal of Medicine, highlighted secukinumab's effectiveness in reducing symptoms and improving physical function in AS patients. These benefits were seen as early as the first week of treatment and were sustained over a year. Fortunately, the treatment was generally well-tolerated, with a safety profile consistent with previous studies involving psoriasis and psoriatic arthritis patients (Novartis). Experience is growing around the world. Secukinumab has treated over 300,000 patients globally, affirming its role as a significant option in managing not just AS but also psoriatic arthritis and psoriasis. Continuous research and updates in treatment protocols reflect its evolving role in addressing the broader spectrum of these horrible diseases.
I’m 40 year old male with a large hernded disk. Im in good shape not over weight and would love to to a video with you about my back and sciatic pain. I have tried to find younger people with this issue and a lot of times it’s an older person and hard to relate. I have a up to date mri and trying to figure a corse of action. I own my own lawn care company and have time off right now and debating on whether to get surgery or wait to improve. Thank you George.
George, check out Chronic Pain Therapy, its Neuroplastic Pain. See a book The way out by Alan Gordon. Also look into Foundation Training by Dr. Eric Goodman. It may help!!
Thank you for your blessing. It means a lot to me. I can only imagine that Russia is going through so much suffering right now as well. So thanks for that, too.
I am 29 and have AS from 9 years now...Is it possible to connect with someone how are suffering from same to understand the challenges in coming years or if we can create a group or for people with AS
That is a really great idea. There are several Patient support groups online, including Facebook groups. Please look on Facebook if you’re on that platform, otherwise, Google patient support group and connect.
Hi Matank, I want to connect with you as I have been clinically suspected of AS. I have been living for the past 70 days with excruciating pain, and it flares up at midnight and early morning.
Dr Dan , Please I need your help with diagnosing something as the doctors I have went to couldn’t diagnosis my problem. I am a 49 year old female , I have chronic back pain in my right lower back which seems to radiate towards right hip joint and further towards medial part of the thigh , The pain feels like something is stretching internally , and a pinching type of pain , When I get up from the bed i start feeling the pain and then after exercising for a bit it goes away in an hour and severity of the pain decreases when i am moving and pain is more when I’m standing. I have this pain since 7 years. I had a MRI in 2018 and now recently last week , both the MRIs showed mild disc changes on the LEFT side but all the pain that I have is on the right side. Also this pain went away for some months when I started using Herbalife products (including protein powder and a lot of products like calcium ,multivitamin etc.) But then I stopped using Herbalife products as I got to know they were harmful. And after I stopped using Herbalife products the pain came back. I’m really confused as to what has happened. I’d really appreciate it if you could help me with this
Hi, I have 2 bulging discs with large annular tears causing bilateral foraminal stenosis at L4-L5 and L5-S1. My surgeons is recommending a two-level laminectomy. The vast majority of my pain is in my lower back, and I start getting debilitating spasms if I stand or walk for too long. Would the laminectomy be a good option?
Seen several of your spinal stenosis hey doc I don't know what to do I have severe stenosis in several different levels of the lumbar and I can't stand for less than 2 or 3 minutes and the pain becomes so severe but gets better when I sit but I can't live sitting down and depending on a bottle of oxys. Seen a surgeon but since I'm a high risk patient no one will do surgery I can't lose my legs
How do I contact you I'm from uk I have lumber spinal sentosis on 3 lvl I have foot drop and nerve damage I had 2 decompression surgery been on tramadol last 10years I'm only 35yrs old
I have had AS since I was 18 years old and am currently on methotrexate,and biologics ,150 tablets a week. I am a floor layer and many a morning am in tears with the pain and push myself through every day it’s hard . What’s this new drug called ? Desperate for help and now I am 60 years old still working 6 days a week never have time off but not sure how much more I can take tbh so depressed just started anti depression tablets just to add onto the rest. 😢
Had juvenile Ankylosing spondylitis from 13 , now 24 , I was on Enbrel for 7 years and now Xeljanz from 2 years , Now I am facing partial numbness and burning in saddle area and feet .
I'm sorry to hear that. You've deal with a lot for someone so young... I admire your courage and perseverance. You should know that your foot numbness can be a potential complication associated with the use of Xeljanz (tofacitinib), or potentially related to the AS. Numbness is not one of the most commonly reported side effects of Xeljanz. It works by inhibiting certain pathways of the immune system that can lead to inflammation. While numbness or tingling in the feet could occur as a side effect of Xeljanz, but it's important to note that such symptoms might also be related to the AS itself. It is crucial for you to consult with your doctor to determine the cause and appropriate management. Hang in there. I'm hoping for the best for you.
Thank you for the information. The drug is in Phase II with around 250 patients enrolled. Kindly share the music you used in end credits. Thanks a lot Dr.
What are the options for serve l5-s1 disc disease when inflammation and function from the disc is the problem? Tried everything and offered an ALIF can give a 50-50 outcome. In the U.K. so might be different to USA options
@@BestPracticeHealth thank you very much. Yes he offered me radio frequency ablation yesterday as a next step to consider vs the surgery at this point.
hello. Anti-inflammatory medication’s are often used in the treatment of osteoarthritis. Which joint is affected? Some people even try food as medicine, in an attempt to reduce inflammation. What have you tried for your arthritis?
I have the HLA-B27 gene Ankylosing Spondylitis, both SI joints are partly fused.... Humira helps. Also have Osteoporosis, Fibromyalgia, and Congenital Cervical Spinal Stenosis. Just had total hip replacement surgery, and am currently on the mend. 💙🧬🦓
I was diagnosed last month and was given a leaflet! I have SI joint pain as well as a bad back… I’ve heard AS is progressive so what am I expecting to happen?
That's a great question, and the answer is HUGE. I really believe that with complex health issues like Ankylosing Spondylitis (AS), the first and most crucial step is to find the right doctor and have an in-depth discussion with them. The right healthcare professional can guide you through the diagnosis, treatment options, and management strategies tailored to your specific needs. Remember, finding the right doctor who understands AS and has experience treating it can make a significant difference in your journey. Hang in there, and know that I'm hoping for the best for you. Stay strong and proactive in seeking the care you need.
This was my first thought after diagnosis The mutation of white blood cells on HLA B27 is similar to the protein spikes on Covid sickle cells if we destroyed the cells just like Covid wouldn’t itch cause of the arthritis be vanished ❤
I was getting pain medication for ungodly pain on my back spinal stenosis..now I'm barely able to move I drop things can't stay on my feet. I look normal unless u watch me closely and I can't get up or do much
I'm sorry to hear that; you're dealing with a lot, especially with the spastic paraplegia. Hang in there. I hope you have a good physiatrist to help manage your care. A skilled physiatrist can truly make a significant difference and greatly impact your quality of life over time. I’m wishing you patience, strength, and a great deal of good luck.
Like for me i went to dr for when i put my ankle down it sharp pain went to knee and just rested it for a bit but sorta got better but seem like it goes in the right foot causes the most issues it like pops when i move my toe and knee get tight some people say i should get in x ray. Their was one year i had to take work off because it hurt to walk.
@@BestPracticeHealth you mentioned yes on another comment… so is it yes or not typically? If so then that would cause a long term problem since atrophy of the multifidus muscle will not stabilize the joint and therefore cause major wear and tear of the joint.
Most of the time when people use the term biologic, they’re referring to protein-based therapeutics. For example, stem cell proteins, growth factors, etc. I think that’s what you’re thinking of.
Hi Doc I had L4-L5-S1 Disc herniation 18 months ago. lower back pain almost gone but still having burning sensation in my leg (Sciatica). No weakness or numbness. but radiation going to leg n foot. should I wait or should I have epidural or Ozone disc injection?
There's no definitive evidence that either one will help. It's kind of grab bag situation. Often the best you can do in this situation is find a great doctor and follow their advice.
Hi , I am 19 years old , and been through the same situation from last 1 year ,,, disc bulgings and herniation at L1 , L2 , L4 , L5 , L5-S1 levels ..... Previously I had severe heel pain and right knee pain....... I have been diagnosed with injection remicade ( infliximab 300 mg ) , during last 6 months.... It worked out very well in my case ..... After the 1st dose ... Sciatic pain was still there ... But after 3rd dose , I got relieved of sciatic pain too..... But sometimes it triggers , that radiating pain , just gives me chills and fear , that it would come back again....... Please don't do any heavy exercise , or sudden turns and twist , and exercise regularly ..... I followed this strictly , and this aided my recovery
@@brendaflood7131I disagree! I’m a 69 year old female and I’ve had this since I was 14. I want to die, because I can’t do anything except lie fine and walk about a block and lie down again. I feel like I’m dying and need a wheelchair. I can’t go on dates, shop, etc. Guys are mad at me because I’m always sick. I have Lyme as well, but my spine hinders me from even standing to take a shower, dye my roots, take care of my dog, etc. Even my ex-husband thinks I’m going to die, and wants me to go to a hospital. My life is not what I thought it would be. Thank God I have a pain doctor!
I was recently diagnosed. Fairly progressed. Not good. They want to put me on Humira, but I'm freaked out about it. The side effects are staggering, in my opinion. Crazy high level of bad side effects. How can i stay informed about this possible new treatment? Are you watching for this, keep us updated? The insurance companies work with the drug companies and make a ton of money on these crazy expensive drugs. This does not lend hope to the possibility of a cure. How far out would be realistic?
I appreciate the information but am saddened by the misinformation. I am HLA B27 positive, I have all the symptoms and damage but because of this twitch beat information that MEN get it, I went misdiagnosed for 30 years. Please correct your mistake. It does a total disservice to us women who have suffered needlessly. I was finally diagnosed this past year. It took me figuring for myself to finally get a doctor that would listen to me. I now have permanent damage to my spine because "women don't get AS". At 57 I haven't been able to work for 4 years now. I can barely stand or walk. I'm angry that there was help (biologics) but it kept getting missed due to bad information. like all diseases they are just now starting to study women with AS. We often present differently than men. It often starts in the cervical and Thoracic spine first. Thank you for listening.
Yes, ma’am! Thank you! Your story is so important to share so that people have a better understanding of this condition and also all the BS women deal with in the medical sphere. I agree that a correction or suggestion of nuance would service and respect our community.
I stand corrected! Thanks. Here is some more info from Chat GPT that may help correct the record: While AS is more commonly diagnosed in men, women can also have this condition, and their experiences can be quite different: Symptoms in Women: Women with ankylosing spondylitis may experience symptoms differently from men. They often have a more widespread pain pattern and may experience more neck pain. Additionally, the disease tends to be less severe in women, but this can lead to delays in diagnosis. Diagnosis Challenges: Women are often diagnosed later than men. This delay can be attributed to the perception that AS is a predominantly male disease and because women tend to have less visible evidence of the disease on X-rays, which are a primary tool for diagnosing AS. Effect on Fertility and Pregnancy: AS doesn't typically affect fertility. Most women with ankylosing spondylitis can conceive and have a normal pregnancy. However, it's important for women with AS to consult with their healthcare provider when planning a pregnancy. Some medications used to treat AS may not be safe during pregnancy. Treatment: Treatment for ankylosing spondylitis in women is similar to that in men and includes medications to reduce inflammation and pain, physical therapy, and exercise. It's essential to maintain a good range of motion and posture. Psychological Impact: Chronic diseases like AS can have a significant psychological impact, including increased risks of depression and anxiety. Women, in particular, may face unique challenges related to body image, mobility, and the balance of family and work life. It's crucial for women with symptoms suggestive of ankylosing spondylitis to seek medical advice early. Early diagnosis and treatment can help manage the symptoms and potentially slow the progression of the disease.
There is some initial research that the gene mutation and the unusual T and B cell activity has a positive influence on immunity to certain viruses including flu, HIV, and herpes. I tested positive for HB mutation years ago following a pretty egressive uveitis event. Interestingly, at 60 years I’ve never had a flu shot, never had the flu even once. Was vaccinated for Corona and never tested positive even though other vaccinated friends and family did, somemultiple times. And the clincher in my mimd ….as a gay man hitting my ‘sexuality peak ‘ in the late 1980s/early ninety’s and never contracted HIV while most of my friends, all less promiscuous and ‘safer’ practicing than myself, almost all died of AIDs during that very dark period in my life. There are some medical studies, and some doctoral papers available on line you can check out, but in my mind, I’m convinced there’s a viral immunity component and I’m surprised it isn’t on anyone’s radar.
I trained in neurosurgery in San Francisco during the nineties, which coincided with the tail end of the AIDS epidemic and the development of the cocktail. I saw patients in the dedicated AIDS ward at San Francisco General Hospital. The bravery, camaraderie, and courage of those guys never left me. The unity and support from the community, especially the lesbian volunteers, really showed me the power and strength of humans. Anyway...I'm relieved to hear you didn't contract it. While we now have PrEP as a preventive measure, I hope you're being responsible in your health decisions.
Probably some nasty person is pressing "report" button (3 dots to the right of comments) and YT algorythm is removing your comment. Either by ignorance or out of malice.
Hello! Hang in there. I'm sorry to hear about your disease. It affects many people very differently. I hope you care is mild and you are not suffering.
I've suffered from this disease for nearly 20 years. This is the first time I've ever been told there's "hope". It's very damaging to the psyche when doctors tell you there's no cure and it's a lifelong disease. I've been through 4 biologics (~$8K/mo. for 12 years), all the lower class drugs (methotrexate, prednisone, gabapentin, SSRIs) etc. now I have spine stimulators installed in my back to help with the pain. I've suffered for years. Thank you for sharing this information. Just the idea that there could be hope is liberating mentally. Suffering from debilitating chronic pain and fatigue day after day destroys your will and desire to live. I will definitely be keeping an eye open for this
I hear your frustration and sorrow. And brother, I'm with you. Hang in there. They say we are never given more than we can handle. Clearly they think you can handle a lot!!! I'm sending you strength, patience, and hope. You are not alone.
@@juliap.5375please, please tell me you first hand know this to be true? Any guidance on how to find out further about access…, I’d be beyond grateful. I’m hitting a wall…, where I know not how much longer I can suffer around the clock. Thank you 🙏
I hope you have access and get treatment soon. And I'm glad you are using the internet to keep track of what is out there. With difficult conditions like AS you have to be the captain of your care team. Hang in there. I'm sending you hope, strength, and patience.
Female here with ankylosing spondylitis 🤚 It doesn't only affect men.
Me too
Same here! Women are wildly under diagnosed
Women and men are widely under diagnosed , it is the disease itself that is 100% neglected by the medical systems.
Me too
Same!
I was just diagnosed last fall at 44. I am a woman. It does not just affect men. Women are just constantly misdiagnosed with “fibromyalgia.” I have had it since my 20’s possibly late teens.
This disease has sucked the life out of me. I am also negative for the gene. I hope this video is true.
Hang in there! All I can do is wish you comfort.
@@BestPracticeHealth I appreciate that. Thank you.
Symptoms since I was 16. Wasn’t diagnosed until I was 47…they couldn’t blame it on my uterus anymore!
@@MrsMoody01 That is crazy how long people, especially women, suffer.
How are you doing now??
@@ItsJustMe-nq1dg I’m on Cosentyx now so that helps a lot. Flares are not as bad or as long now and it has reduced the inflammation in my SI joints. Funny thing is they didn’t even consider AS for me until my son was diagnosed at age 15 and they read we had family history. My son and I are both HLA B27 positive and my brother has psoriatic arthritis. How are you doing? Hope you’re getting some relief.
We need more doctors like you. 🙏
You don't necessarily have bamboo spine with AS, and it might never get to that stage. And women can get it too.
I LOVE THIS and even though you are no longer in practice you are still caring for tons of patients who need your help and information!! THANK YOU!!
Thanks so much! That is exactly how I feel.
Thank you for reporting hope. I think of the many advances in knowledge and less invasive surgeries over the last 10 years and look forward to more progress for spine/arthritis patients.
Definitely! Thanks for your comment.
I was diagnosed at 18 had to drop out of college (hotel management) because of the pain, doctors told me to exercise but it just got verse took lots of NSAIDS, steroids, painkillers but everything was temporary, after a few years of medication i decided i can't do it anymore. I am almost 25 now and off medication from a year. I have difficulty getting in and out of bed, sitting and standing and performing daily tasks. Figuring out a career is impossible! What's worse is that even your friends, relatives and sometimes even parents don't really understand the pain and just think you are lazy and that is why you have mobility issues cause you didn't exercise. Sneezing is a death sentence. So trust me when i say TAKE MY MONEY WE NEED THIS CURE ASAP!!!!
I'm so sorry to hear how AS has derailed your life. Hang it there. I'm sending you strength, patience, and hope.
I have the same kind of experience mentally and physically. Its been 6years now, I am 28. My parents also thinks I am lazy and don't like exercise.
Planned for a total hip replacement next month. Hope this medicine comes to market fast.
Similar to you. Back spine specialist told my parents when i was 20 i was lazy and bad attitude. Then father kicked me out of house. My friends vanished like the mist on a hot day. Due to poverty i had malnutrition.
Somehow still alive, but dont know why. Peyote cactus does help make my body feel better for a while. Goodluck.
Hi, my daughter has AS. We tried hypernourishment and she is now 80% recovery after only 4 months. Pls search dr goldberg hypernourishment on youtube. I hope this helps you too!!
Try eating only beef with salt and water and some electrolytes. This has helped me keep my flare-ups down to 3 weeks. I just had a painful flareup that came after eating grains so now I'm convinced to stop eating all grains even rice
I couldn’t stop crying when they told me. When you’re young, feels like a life sentence of pain. And it has been
Same 😢
Humira was just removed off my insurance and seeing this brings me a lot of hope!!
Did you get any better with humira?
@@adc_15 It did! Basically removed 90% of my pain, maybe more. I still have occasional flair ups but it’s few and fair between. I also mitigate my symptoms through diet though so I am low to no dairy and I exercise regularly. Turns out the humira patent expired so they’re are cheaper alternatives that are basically the same as humira. I highly recommend them. I’ve been on humira for 8 years now and had a very severe case of AS before starting. 8 years later and I have zero signs of fusion.
@@adc_15 Try Stellara
Great to know there's progress in this area. I'm 40 and I have been suffering for half of my life now with AS. Not even sure if this discovery will mean anything for the poor as treatments for AS have proven to be so expensive. Been surviving on painkillers. Nonetheless, we are grateful for the discovery.
Female 63 had it for over 30yrs , misdiagnosed for many yrs , unfortunately I can't take Meds . Limited diet as I've found a lot of foods makes it flare up. Good luck to all out there ..I feel your pain.
Could you please share your diet plan, I have been suffering as since 2021 June .
@@mrbeastzone1 carnivore...once you get over carb withdrawal the pain disappeared..and I hate meat but it's worth it to be mostly pain free..haven't solved the migraines altogether but Dr is so happy he just said keep doing whatever your doing.
Likewise. Can only eat protein.
@@margsmith687What type of meat - does it matter?
@@Ivv93 follow Dr Ken Berry he can explain it better than me ,I hate meat and have always hated it , I struggle but to be pain free is worth it .I like my meat cold but I watch others on youtube for ideas , hope you find relief.
im 26....have AS for atleast 9years....been on simponi..on jakinh initors....pain in other areas controlled but constantand severe pain in waist region ....i cant continue for long like this ..hope something comes up..but as soon as i hear russian doctors, my trust level swoops down
Yea 23 and it’s destroying my life to say the least
How your sex life does the pain increases after sex or masturbation for 2.. 3 days
I've found that eliminating all chemicals and grains help me. When I have a flare up I only eat beef, salt and water.
63 Years YOUNG here, misdiagnosed SINCE 1997- until 2002 met a surgeon he mind was BLOWNED, I've only read about it, AND YOU HAVE IT! I'M completely FUSED, "0" movement in neck "0" in spine. use my back for your bar. Had my left shoulder rebuilt, and both knees replaced, feel it moving into my left hip. I'll take this IV TODAY! HOOK ME UP^
I like this man of russian bear appearance. He says that he is a doctor, not specifying MD nor other type. But he is not wearing white lab coat, nor stethoscope, nor putting up airs. He is onto something. There are still good people in this world.
Thanks for the comment! I'm an MD.
Hey bro/Dr.. heres to new hope 🙏🏼 Had AS since 25ish Surfing carrer cancelled early 😭 full hip replacement at 37. 47 now tried Simpini, embrel and past 10+yrs stable on Humira 40, 2 weekly injections 💉 stable but anoying constant pains in the kneez, hip and ankle joints! Ill be following you for further info. Thanks mate 😎stay kool!
I’m also 47 diagnosed with AS around 38, but had small symptoms since my teens. I’ve had total hip done in 2018, but left hip gives pain still in the front of hip, and can’t walk without a cane. Spine or head are all frozen in a forward posture. By the time I was offered Humira I was already frozen, so being unsure about the risk vs benefit, I stayed untreated. Did Humira keep you from getting rigid curved spine? Does it take away stiffness and help with range of motion? And do you have the hlab27? I was neg. Thanx for any feedback my fellow AS Warrior ~ an ankylo bro
What great news. Just wish they would come up with something for those of us with all the other spine problems.
Amen! As my grandmother used to say, "From your mouth to God's ears, darling."
Thank you for sharing and bringing this info and recognition. THIS DISEASE AFFECTS WOMEN. I have it. It also starts earlier than in your 20's, unfortunately. Most report feeling pain as children or adolescents. but THANK YOU so much for putting this on our radar. Much love
You are so right! Thank you so much for pointing that out.
Thanks you 👍
This video change my mind love you sir, Sir please inform when this medicine will be available in the market Please...
I'm blown away by the quality of the video!!
I want this treatment asap. Im ready to give everything . Please take my pain away. All my friends are hanging out and im just unable to walk . Im only 20
Meet dr akerkar Mumbai Bhandup
For what exactly? Me mumbai ja sagtahun magar wo kya karega?@@MrAnkit-ur4yq
Mujhe bhi AS hai, I'm so sorry for you.
Try eating only beef, salt and water. It helped me
Same here I'm 28 all my friends are working nice jobs 1 even bought as house recently and I'm here disabled unemployed. Hopefully this develops quickly.
AS is KILLING ME!!!!!! I get no sleep, and feel immobile lately. I am 48, diagnosed about 5 years ago but suffering from it since I was 20.
Amazing 🤩 Thank you 🙏🏻 I suffer from a variation of Ankylosing Spondylitis: Seronegative Non-Radiographic Axial Spondyloarthritis (although it’s finally showing in MRIs). It’s been soooooo painful for over 30 years now, and since there is the misconception that it’s a “male only” disease, it took forever to get me diagnosed, just about a year ago (after suffering excruciating back pain and neurological symptoms, as well as vertebral fractures, for 3 decades!) I’ll definitely talk to my rheumatologist, immunologist, neurosurgeon and neurologist about this. My nrxAxSpa has advanced way too fast in this past year especially. Nothing seems to help my symptoms or the progression of damage to my spine.
I appreciate your comment. It took me 15-20 years to get diagnosed. I was just diagnosed at 44 yo, last fall.
I asked a rheumatologist about it about 15 years ago and was told it was a man’s disease. 🙄
Yet, here I am a 45 yo woman with AS.
Are you on a biologic at all?
Good luck to you and I hope your didn’t progress. 😢
That must have been so frustrating. I am so with you! Hang in there. We could be one little step away from someone figuring this out and ending this nightmare for you. There's nothing good about suffering but it does make you strong. You've got this. I am wishing continued strength, good sleep, and nurturing food for you. PS. If you are not on an anti-inflammatory diet you definitely should try it.
Lets hope when you reach menopause that it goes into remission like mine did. Hugs to you🤗
I'm 52 male with AS for half my life. I'm on "benipale" injections, it's keeping my AS 75% controlled.
Thank you Dr. For this great video. I have been on Enbrel and then Humira for almost 15 years now. And recently my insurance company took off Humira from their supported medication. I have tried so many things like naturopathic, homeopathic, massive lifestyle changes, and nothing seems to work besides the biologics. Really glad to hear that there maybe new hope in the horizon.
Oh my goodness hang in there. 10 years is a long time to be dealing with this. I’m so glad you do get results from the biological treatments. And I’m really hoping that this new treatment is going to work for you too. Please let me know if you get it.
Try eating only beef, salt and water. It helped me
I'm also victim of ank loosing spondylitis, I was diagnosed since 2020 I guess , but I feel lot of pain i was in death bed for like 1 year, after I check hlba27 it was positive, before hitting ankloosing spondylitis I was a gym lover i was taking protein natural as well as powder after diagnosing spondylitis I reduced like 10 kg, now I am ok I took like 20 adilumulab injection now I am good i feel i am normal person.. I can hit the chest pressing gym like 80 kgs legs scots above 100kg n I can play cricket tooo n can run like normal person do
Hi !! Can I get in touch with you as I am undergoing pain in AS. Can I get your email id or any other mode to reach you out to learn the medications that you used earlier.
It would be a great help. Thank you
Thanks a lot I love you for caring for us May God bless you
Sir,
When will anti trbv 9 immunotherapy come to the market?
Waiting for your response.
I don’t know! If I hear anything, I’ll certainly let you know right away.
We are waiting 😔
3 weaks
@@ВладиславТолстиков-я4х is it out ...?
Thank you for you message of hope. My son committed suicide after 20 years of A.S. torture.
Oh, no. I'm so sorry to hear that. I'm sorry for your loss. The death of a child is so devastating. I always think that it's the wound that does not heal.
As a neurosurgeon I once stood by the bed of a comatose patient as the last rights were delivered. There was nothing I could do, and it was time to turn off the life support on a young man who was badly injured in a car accident.
I stood by the bed and held hands with family members. I felt so angry that I wasn't able to help him. Not only angry, but frustrated to the point of shame. It was my job to save people like this.
Then priest said "The doctors, they do what they can..." And I knew in my heart it was true. I felt some relief.
As a mother you did what you could. And you are not alone... the medical profession is working day and night to come up with better treatments for this terrible disease. But it wasn't enough. Your son's life ended in tragedy, but you are not the cause. One day we will have something better. In the meantime, I hope you can remember him in the good times. May his memory be a blessing for us all.
Man we need an update about this and know when this can come on the shelf
I’m a 25yr old female have had it for 6yrs if not more and was diagnosed 2yrs ago by an autoimmune doctor after my doctors were neglecting my complaints
I will say nerve block spinal injections are the only thing that realized my pain but doctors don’t like to do this
I spend most of my life in bed. It’s not only morning! It’s all day! I can’t stand up more than 10 minutes and I start to cry. My spine is fused together and I had a pain doctor with a good sense of humor, tell me about 10 years ago, that my spine was “disgusting”!
I already knew that.
My rheumatologist diagnosed me, but there’s nothing they can do!
When did this all happen? Was the progression fast? I hope you heal soon
Quiting sugar will do wonders for the condition, also Reishi mushrooms help me immensely, got diagnosed 10+ years ago, no medication.
Thanks for the suggestion.
Can you explain more of how you manage the disease? My dad suffers with this. I want to help him
@@nehneh5488 Quit sugar immediately, try an alcohol based sweetener instead, reduce carbs as much as possible. And try Reishi mushroom, make it into a tea, twice a day strong dose for 4 days and see if it reduces the pain, continue if it does.
Hello Dr. I’m Aliy I am from Uzbekistan which is located in the central Asia. I have AS and it hursts a lot. Can doctors find a way in the future for AS. Can i hope Dr. Please share a next video related AS’s cure🙏🏻thanks in advance.
I cannot wait! As soon as I know something you will too. Hang in there.
Aonde tem essa medicação de cura da espondilite ???? Qual país
Dr. Dan first of all thank you so much about this information im so greatfull for this but please give us some update is there anything new. Please
Can you do an update on this?
There is a drug, BCD-180 that is in clinical trials now, one in phase 2, and one in phase 3.
BioCad is developing it.
This is very hopeful!
Sounds like you did it for me! Thanks so much for your kind comment and great information.
Seniprutug bcd 180 I'm looking forward to it too man let's hope for the best
@@BestPracticeHealth not really. How many read these comments?
I'm sure many of your subs would love to know about it.
@@MrsRabbit8 not just subscriber man i want anyone in the world with as to hear that and praying for biocad success i think they are so close hope they find the way and wishing it to be affordable for everyone
Doctor, I have a friend of mine who is 35 years old and has stiffness in the spine. Can he get treatment? I am from Libya and the specialists in Libya told us the success rate of the operation is 0. Is this true?
Requesting you to make new video on any new update of same medicine you mentioned in video.
Pls do the needful 🙏
I am suffering from it from last one decade. Hope and i always pray to god that one day there will be ultimate solution to this problem.
We need more doctor like person in this world. Who share the data about this kind of disease.
Sir I am suffering from Ankylosing spondylitis since more than 5 years.
Currently I'm on biologics injection Intacept 50mg.
Find little bit relief with this expensive injection but still not completely free. This disease literally break you from inside.
Sir Im from India and very few doctors knows about it. If possible please discuss this new treatment with indian rheumatology association.🙏
How much cost a injection?
It sounds like you are on Etanercept (Enbrel) for your AS, right?
Biologic medications like Enbrel are not a cure, but they have significantly improved the treatment landscape for ankylosing spondylitis (AS). These medications work by targeting specific components of the immune system to reduce inflammation and slow disease progression.
Enbrel is a TNF Inhibitors. These drugs block tumor necrosis factor (TNF), a substance in the body that causes inflammation. There are several other drugs in this class:
Adalimumab (Humira)
Certolizumab Pegol (Cimzia)
Etanercept (Enbrel)
Golimumab (Simponi)
Infliximab (Remicade)
There are other classes of drugs. IL-17 Inhibitors: These inhibit interleukin-17 (IL-17), a protein that plays a role in inflammation.
Secukinumab (Cosentyx)
Ixekizumab (Taltz)
JAK Inhibitors: Janus kinase (JAK) inhibitors are a newer class of medication that can be used for AS, targeting the JAK pathways involved in the body’s immune response.
Tofacitinib (Xeljanz) - Note that JAK inhibitors are typically used when patients haven't responded well to TNF or IL-17 inhibitors.
IL-12/23 Inhibitor: These target interleukin-12 and interleukin-23, another set of proteins involved in inflammatory processes.
Ustekinumab (Stelara) - While primarily used for other conditions, it may be considered in certain cases of AS.
A biologic medication depends on several factors, including the severity of the disease, the presence of other medical conditions, patient preferences, and insurance coverage. Each of these medications has its own risk and benefit profile, which must be considered and discussed with a healthcare provider.
Regular monitoring and follow-ups are crucial when on biologic therapy, as these medications can have side effects and may increase the risk of infections. Your healthcare provider will guide you in choosing the most appropriate treatment based on your specific condition and health history.
Hang in there! Its a lot for anyone to manage. I'm sending you best wishes and hope for a better year.
Any update for 2024 on this ?
how about a follow up on how to get this stuff?? What's it called?
Any updates??
Great work providing these series of videos that provide an outstanding resource for those in pain. Do you plan on continuing your one on one reviews of MRIs/XRAYs? I remain very interested in doing one with you. If you are still doing these, what is the process for requesting one? Thank you very much!
Thanks for your information, Dr. It brings hope to AS patients, including its close relatives. My son suffered severe pain and injuries since he was 16. Until he was 18 he was diagnosed with AS. He started a treatment based on Cosentix (Secukinumab). One injection per month. The results has been amazing. No pain anymore since then. I, as his father, always wonder if he will be all of his life depending on this drug. Your information results very valuable and hopeful for me. I already shared with our reumathologist , including the original paper of Nature magazine. Thanks a lot! PS we are Mexicans and live in Mexico. Here the availability of new drugs usually delay 2-3 years after you have them in the US. Despite that, Cosentix here in the country is a common treatment for AS and is having very good results.
Thank you for sharing your son's experience with Secukinumab for his ankylosing spondylitis. As you know, the FDA has approved updates to the labeling of secukinumab, allowing for an up-titration to a 300 mg dose for adults with active ankylosing spondylitis. This change is based on results from the MEASURE 3 study, which demonstrated better efficacy at the 300 mg dose compared to the standard 150 mg, especially in patients previously treated with anti-TNF therapies. This dosing flexibility aims to optimize treatment response and symptom relief in patients (Novartis) (HCP Live).
I don't have enough expertise to know whether your sone will need it for life. The MEASURE 1 and MEASURE 2 studies, published in the New England Journal of Medicine, highlighted secukinumab's effectiveness in reducing symptoms and improving physical function in AS patients. These benefits were seen as early as the first week of treatment and were sustained over a year. Fortunately, the treatment was generally well-tolerated, with a safety profile consistent with previous studies involving psoriasis and psoriatic arthritis patients (Novartis).
Experience is growing around the world. Secukinumab has treated over 300,000 patients globally, affirming its role as a significant option in managing not just AS but also psoriatic arthritis and psoriasis. Continuous research and updates in treatment protocols reflect its evolving role in addressing the broader spectrum of these horrible diseases.
@@BestPracticeHealth thanks a lot for your response!
I’m 40 year old male with a large hernded disk. Im in good shape not over weight and would love to to a video with you about my back and sciatic pain. I have tried to find younger people with this issue and a lot of times it’s an older person and hard to relate. I have a up to date mri and trying to figure a corse of action. I own my own lawn care company and have time off right now and debating on whether to get surgery or wait to improve. Thank you George.
George, check out Chronic Pain Therapy, its Neuroplastic Pain. See a book The way out by Alan Gordon. Also look into Foundation Training by Dr. Eric Goodman. It may help!!
Is there any further update on this medicine?
Godbless you, God bless Russia doctor !!!
Thank you for your blessing. It means a lot to me. I can only imagine that Russia is going through so much suffering right now as well. So thanks for that, too.
I am just 16 and suffering for AS I need somebody who help me 😢
I am 29 and have AS from 9 years now...Is it possible to connect with someone how are suffering from same to understand the challenges in coming years or if we can create a group or for people with AS
That is a really great idea. There are several Patient support groups online, including Facebook groups. Please look on Facebook if you’re on that platform, otherwise, Google patient support group and connect.
Hi Matank, I want to connect with you as I have been clinically suspected of AS. I have been living for the past 70 days with excruciating pain, and it flares up at midnight and early morning.
Dr Dan , Please I need your help with diagnosing something as the doctors I have went to couldn’t diagnosis my problem. I am a 49 year old female , I have chronic back pain in my right lower back which seems to radiate towards right hip joint and further towards medial part of the thigh , The pain feels like something is stretching internally , and a pinching type of pain , When I get up from the bed i start feeling the pain and then after exercising for a bit it goes away in an hour and severity of the pain decreases when i am moving and pain is more when I’m standing. I have this pain since 7 years. I had a MRI in 2018 and now recently last week , both the MRIs showed mild disc changes on the LEFT side but all the pain that I have is on the right side. Also this pain went away for some months when I started using Herbalife products (including protein powder and a lot of products like calcium ,multivitamin etc.) But then I stopped using Herbalife products as I got to know they were harmful. And after I stopped using Herbalife products the pain came back. I’m really confused as to what has happened. I’d really appreciate it if you could help me with this
@@riceimprove consultant with an orthopedic doctor
Hi, I have 2 bulging discs with large annular tears causing bilateral foraminal stenosis at L4-L5 and L5-S1. My surgeons is recommending a two-level laminectomy. The vast majority of my pain is in my lower back, and I start getting debilitating spasms if I stand or walk for too long. Would the laminectomy be a good option?
hey, wondering if you review mris? and what is the price ? im from canada just looking for a second opinion
Are their any new developments on this?
Thanks sir, from 🇮🇳 india
fingers crossed!
Definitely!
Seen several of your spinal stenosis hey doc I don't know what to do I have severe stenosis in several different levels of the lumbar and I can't stand for less than 2 or 3 minutes and the pain becomes so severe but gets better when I sit but I can't live sitting down and depending on a bottle of oxys. Seen a surgeon but since I'm a high risk patient no one will do surgery I can't lose my legs
Be sure you are seeing the best doctors. Hang in there!
I want to know the company name which inventent this treatment?
Me too
Same here
@@abhikaonke1062 biocad is developing this bcd180
How do I contact you I'm from uk I have lumber spinal sentosis on 3 lvl I have foot drop and nerve damage I had 2 decompression surgery been on tramadol last 10years I'm only 35yrs old
I'm a female with AS, must work as a single, and wish the disease was more known. Few have ever heard of if, least of all, understand it.
Help us with manuscripts please
hi, i went to the website. but i didnt see a contact form. id like to know how to reach you and where to find the study.
I have had AS since I was 18 years old and am currently on methotrexate,and biologics ,150 tablets a week. I am a floor layer and many a morning am in tears with the pain and push myself through every day it’s hard . What’s this new drug called ? Desperate for help and now I am 60 years old still working 6 days a week never have time off but not sure how much more I can take tbh so depressed just started anti depression tablets just to add onto the rest. 😢
Same here , since 17 age , have you been diagnosed with injection remicade
Had juvenile Ankylosing spondylitis from 13 , now 24 , I was on Enbrel for 7 years and now Xeljanz from 2 years , Now I am facing partial numbness and burning in saddle area and feet .
I'm sorry to hear that. You've deal with a lot for someone so young... I admire your courage and perseverance.
You should know that your foot numbness can be a potential complication associated with the use of Xeljanz (tofacitinib), or potentially related to the AS. Numbness is not one of the most commonly reported side effects of Xeljanz. It works by inhibiting certain pathways of the immune system that can lead to inflammation. While numbness or tingling in the feet could occur as a side effect of Xeljanz, but it's important to note that such symptoms might also be related to the AS itself. It is crucial for you to consult with your doctor to determine the cause and appropriate management.
Hang in there. I'm hoping for the best for you.
Yes this condition was linked to Ankylosing spondylitis, Cervical spine stenosis.
Thank you for the information. The drug is in Phase II with around 250 patients enrolled. Kindly share the music you used in end credits. Thanks a lot Dr.
Hey! Thanks for the update. I really appreciate that. I don't think I can share the music on RUclips, can I?
@@BestPracticeHealth Just tell the name of music then..
@@statslearn any further update on the drug??
How long it will take to be available for therapy
What are the options for serve l5-s1 disc disease when inflammation and function from the disc is the problem? Tried everything and offered an ALIF can give a 50-50 outcome. In the U.K. so might be different to USA options
bestpracticehealth.tv/reading-your-mri-report-discogenic-back-pain/
@@BestPracticeHealth thank you very much. Yes he offered me radio frequency ablation yesterday as a next step to consider vs the surgery at this point.
Hi doctor, will medication care for oserarthris too
hello. Anti-inflammatory medication’s are often used in the treatment of osteoarthritis. Which joint is affected? Some people even try food as medicine, in an attempt to reduce inflammation. What have you tried for your arthritis?
I have the HLA-B27 gene Ankylosing Spondylitis, both SI joints are partly fused.... Humira helps. Also have Osteoporosis, Fibromyalgia, and Congenital Cervical Spinal Stenosis. Just had total hip replacement surgery, and am currently on the mend. 💙🧬🦓
Sir ankylosing spondylitis patient get remission?if yes how long time last,can life time last as?
Prof Ebringer low carbohydrate diet...plus blueberries and cranberries
I was diagnosed last month and was given a leaflet! I have SI joint pain as well as a bad back… I’ve heard AS is progressive so what am I expecting to happen?
That's a great question, and the answer is HUGE. I really believe that with complex health issues like Ankylosing Spondylitis (AS), the first and most crucial step is to find the right doctor and have an in-depth discussion with them. The right healthcare professional can guide you through the diagnosis, treatment options, and management strategies tailored to your specific needs.
Remember, finding the right doctor who understands AS and has experience treating it can make a significant difference in your journey. Hang in there, and know that I'm hoping for the best for you. Stay strong and proactive in seeking the care you need.
This was my first thought after diagnosis
The mutation of white blood cells on HLA B27 is similar to the protein spikes on Covid sickle cells if we destroyed the cells just like Covid wouldn’t itch cause of the arthritis be vanished ❤
that’s a very interesting idea. But wouldn’t that mean the destruction of all your white cells? That would be fatal.
So technically IVIG? What are the side effects?
AS people try eating only beef, salt and water. It helped me
Anyone feeling lightheadness with AS?
We don't know what is good morning !!!!!
I was getting pain medication for ungodly pain on my back spinal stenosis..now I'm barely able to move I drop things can't stay on my feet. I look normal unless u watch me closely and I can't get up or do much
Thoughts on discseel ?
It’s a great idea that so far hasn’t really been shown to work very well.
I have some strange diagnoses that are together. Spondylitis, adrenal insufficiency and spastic paraplegia.
I'm sorry to hear that; you're dealing with a lot, especially with the spastic paraplegia. Hang in there. I hope you have a good physiatrist to help manage your care. A skilled physiatrist can truly make a significant difference and greatly impact your quality of life over time. I’m wishing you patience, strength, and a great deal of good luck.
Like for me i went to dr for when i put my ankle down it sharp pain went to knee and just rested it for a bit but sorta got better but seem like it goes in the right foot causes the most issues it like pops when i move my toe and knee get tight some people say i should get in x ray. Their was one year i had to take work off because it hurt to walk.
Does RFA cause Multifidus atrophy?
Not typically.
@@BestPracticeHealth you mentioned yes on another comment… so is it yes or not typically? If so then that would cause a long term problem since atrophy of the multifidus muscle will not stabilize the joint and therefore cause major wear and tear of the joint.
Taking Stelara now. No improvement yet.
Sir, i am using Tofacitnib for AS.
Is it working?
@@BestPracticeHealth sir, some relief in pain and body movement.
It is easily available in market.
It is not working if we missed i tablet it hurt more
Me too Jacknib 5( Tofacitnib ), twice a day (1+0+1) with salazine 500 mg (2+0+2). I am ok now. I have no pain now.
How he mentioned this new medication and how it works, isn’t that what biologics do?
Most of the time when people use the term biologic, they’re referring to protein-based therapeutics. For example, stem cell proteins, growth factors, etc. I think that’s what you’re thinking of.
@@BestPracticeHealth Humira, Enbrel, Taltz, Cosentyx. These are monocolonal antibodies right? I’m referring to these
Hi Doc I had L4-L5-S1 Disc herniation 18 months ago. lower back pain almost gone but still having burning sensation in my leg (Sciatica). No weakness or numbness. but radiation going to leg n foot.
should I wait or should I have epidural or Ozone disc injection?
There's no definitive evidence that either one will help. It's kind of grab bag situation. Often the best you can do in this situation is find a great doctor and follow their advice.
Hi , I am 19 years old , and been through the same situation from last 1 year ,,, disc bulgings and herniation at L1 , L2 , L4 , L5 , L5-S1 levels ..... Previously I had severe heel pain and right knee pain....... I have been diagnosed with injection remicade ( infliximab 300 mg ) , during last 6 months.... It worked out very well in my case ..... After the 1st dose ... Sciatic pain was still there ... But after 3rd dose , I got relieved of sciatic pain too..... But sometimes it triggers , that radiating pain , just gives me chills and fear , that it would come back again....... Please don't do any heavy exercise , or sudden turns and twist , and exercise regularly ..... I followed this strictly , and this aided my recovery
Sorry, this method is different with using TNF- alpha inhibitors, interleukin IL-17, isn’t it?
@ultrabasotawhat is the medicine name?
Does this work for RA also?
I don't know. Sorry.
How do I get in on it? Lol
I also have a question, is there a cure for this problem 😢
Yes, its called menopause!! I went into remission when I hit menopause at 52 years of age!!
@@brendaflood7131I disagree! I’m a 69 year old female and I’ve had this since I was 14. I want to die, because I can’t do anything except lie fine and walk about a block and lie down again. I feel like I’m dying and need a wheelchair. I can’t go on dates, shop, etc. Guys are mad at me because I’m always sick. I have Lyme as well, but my spine hinders me from even standing to take a shower, dye my roots, take care of my dog, etc.
Even my ex-husband thinks I’m going to die, and wants me to go to a hospital. My life is not what I thought it would be. Thank God I have a pain doctor!
Was he cured for good or did he get medication for life in intervalls?
Every 4 months. Not bad
I used to think that biologics, this is what you just described, there are many different types of them in the USA … hmmmmmm
I was recently diagnosed. Fairly progressed. Not good.
They want to put me on Humira, but I'm freaked out about it.
The side effects are staggering, in my opinion. Crazy high level of bad side effects.
How can i stay informed about this possible new treatment?
Are you watching for this, keep us updated?
The insurance companies work with the drug companies and make a ton of money on these crazy expensive drugs.
This does not lend hope to the possibility of a cure.
How far out would be realistic?
I was concerned too but I can't imagine letting it get worse until I'm in a wheelchair it's a crappy choice either way 😢
Is this like biologics?
I appreciate the information but am saddened by the misinformation. I am HLA B27 positive, I have all the symptoms and damage but because of this twitch beat information that MEN get it, I went misdiagnosed for 30 years.
Please correct your mistake. It does a total disservice to us women who have suffered needlessly. I was finally diagnosed this past year. It took me figuring for myself to finally get a doctor that would listen to me. I now have permanent damage to my spine because "women don't get AS". At 57 I haven't been able to work for 4 years now. I can barely stand or walk. I'm angry that there was help (biologics) but it kept getting missed due to bad information.
like all diseases they are just now starting to study women with AS. We often present differently than men. It often starts in the cervical and Thoracic spine first.
Thank you for listening.
Yes, ma’am! Thank you! Your story is so important to share so that people have a better understanding of this condition and also all the BS women deal with in the medical sphere. I agree that a correction or suggestion of nuance would service and respect our community.
I stand corrected! Thanks. Here is some more info from Chat GPT that may help correct the record:
While AS is more commonly diagnosed in men, women can also have this condition, and their experiences can be quite different:
Symptoms in Women: Women with ankylosing spondylitis may experience symptoms differently from men. They often have a more widespread pain pattern and may experience more neck pain. Additionally, the disease tends to be less severe in women, but this can lead to delays in diagnosis.
Diagnosis Challenges: Women are often diagnosed later than men. This delay can be attributed to the perception that AS is a predominantly male disease and because women tend to have less visible evidence of the disease on X-rays, which are a primary tool for diagnosing AS.
Effect on Fertility and Pregnancy: AS doesn't typically affect fertility. Most women with ankylosing spondylitis can conceive and have a normal pregnancy. However, it's important for women with AS to consult with their healthcare provider when planning a pregnancy. Some medications used to treat AS may not be safe during pregnancy.
Treatment: Treatment for ankylosing spondylitis in women is similar to that in men and includes medications to reduce inflammation and pain, physical therapy, and exercise. It's essential to maintain a good range of motion and posture.
Psychological Impact: Chronic diseases like AS can have a significant psychological impact, including increased risks of depression and anxiety. Women, in particular, may face unique challenges related to body image, mobility, and the balance of family and work life.
It's crucial for women with symptoms suggestive of ankylosing spondylitis to seek medical advice early. Early diagnosis and treatment can help manage the symptoms and potentially slow the progression of the disease.
This!
Precisely!!! I was misdiagnosed for twenty years by a doctor why also MISTAKENLY believed the gene skips women.
There is some initial research that the gene mutation and the unusual T and B cell activity has a positive influence on immunity to certain viruses including flu, HIV, and herpes. I tested positive for HB mutation years ago following a pretty egressive uveitis event. Interestingly, at 60 years I’ve never had a flu shot, never had the flu even once. Was vaccinated for Corona and never tested positive even though other vaccinated friends and family did, somemultiple times. And the clincher in my mimd ….as a gay man hitting my ‘sexuality peak ‘ in the late 1980s/early ninety’s and never contracted HIV while most of my friends, all less promiscuous and ‘safer’ practicing than myself, almost all died of AIDs during that very dark period in my life. There are some medical studies, and some doctoral papers available on line you can check out, but in my mind, I’m convinced there’s a viral immunity component and I’m surprised it isn’t on anyone’s radar.
I trained in neurosurgery in San Francisco during the nineties, which coincided with the tail end of the AIDS epidemic and the development of the cocktail. I saw patients in the dedicated AIDS ward at San Francisco General Hospital. The bravery, camaraderie, and courage of those guys never left me. The unity and support from the community, especially the lesbian volunteers, really showed me the power and strength of humans.
Anyway...I'm relieved to hear you didn't contract it. While we now have PrEP as a preventive measure, I hope you're being responsible in your health decisions.
Why are my comments disappearing?
Probably some nasty person is pressing "report" button (3 dots to the right of comments) and YT algorythm is removing your comment. Either by ignorance or out of malice.
Sir I am from India my problem Ankylosing Spondylitis from 2012 🙏
Hello! Hang in there. I'm sorry to hear about your disease. It affects many people very differently. I hope you care is mild and you are not suffering.
Already bamboo spine in lower back
I've suffered from this disease for nearly 20 years. This is the first time I've ever been told there's "hope". It's very damaging to the psyche when doctors tell you there's no cure and it's a lifelong disease. I've been through 4 biologics (~$8K/mo. for 12 years), all the lower class drugs (methotrexate, prednisone, gabapentin, SSRIs) etc. now I have spine stimulators installed in my back to help with the pain. I've suffered for years. Thank you for sharing this information. Just the idea that there could be hope is liberating mentally. Suffering from debilitating chronic pain and fatigue day after day destroys your will and desire to live. I will definitely be keeping an eye open for this
Today it was registered in Russia and now available for people.
I hear your frustration and sorrow. And brother, I'm with you. Hang in there. They say we are never given more than we can handle. Clearly they think you can handle a lot!!! I'm sending you strength, patience, and hope. You are not alone.
@@juliap.5375Please how can I get it in Nigeria? Please help me
@@juliap.5375please, please tell me you first hand know this to be true? Any guidance on how to find out further about access…, I’d be beyond grateful. I’m hitting a wall…, where I know not how much longer I can suffer around the clock. Thank you 🙏
@@juliap.5375 but isn't it in the phase 3 clinical trial
Sir ❤ from india🇮🇳,I am a HLA b27 positive patient, your information bring me a hope, I am desperately waiting for the medicine😌
I hope you have access and get treatment soon. And I'm glad you are using the internet to keep track of what is out there. With difficult conditions like AS you have to be the captain of your care team. Hang in there. I'm sending you hope, strength, and patience.