It seems mind blowing that Sjögren’s is supposed to be the second most common rheumatic disease, yet it’s highly underdiagnosed and the treatment options seem to lag behind all other rheumatic diseases. I also have psoriatic arthritis and thought that was bad enough that treatment options and research lag far behind other types of arthritis. Now I’ve been told I have Sjögren’s as well, and I can’t believe how many people have been offered nothing apart from moisturise/lubricate every dry part of your body for the rest of your life! Sjögren’s kills people, and even most doctors seem to view it as a “nuisance dryness syndrome,” not a systemic autoimmune disease. I have to wonder if the fact most people with Sjögren’s are middle aged women (like me) is why it’s been dismissed as no big deal for all these years…
It's truly frustrating to hear how underdiagnosed and overlooked Sjögren’s is, especially considering its serious nature. Your experiences highlight the need for more awareness and better treatment options for all autoimmune diseases.
I have sjogren,s I have many problems but listening to you I realize it’s sjogrens and I didn’t know what it was .I live in Canada in a small town. In the west when I go back to my m.D I am going to tell her how much I have learned .Thank you Mary ❤
Once i focused on gut health and killing the overgrowth of candida, I saw improvement. Sugar detox, gluten-free diet, and 100 billion probiotics. It seems like it's about what you put or don't put in your body!! It nice to know new treatment is available.
I have had two treatments with Rituximab , after the first treatment I was pain free for seven months but after the second treatment my pain returned after six weeks, I don’t know why such a different outcome. Thank you for your videos 😊
I'm on Rituxan too, I'm about to have my 4th dose - 2 years in. It's been helping with neurological symptoms when nothing else worked. It does take time to work, like 2 years. Check your dose, make sure you are getting a high dose not 500. The first dose is a loading dose and higher. With autoimmune we need the loading dose every 6 months. I didn't do as well on the lower dose. I was also switched to a generic version which didn't work as well, make sure you are getting whatever you received when it worked best.
I was diagnosed with ITP in 2002 and my hematologist decided to try Rituximab, as I was miserable on Prednisone. It was hideously expensive, even with insurance, and I turned out to be allergic to it. Thank you for the information about Lanalumab; I am going to try to get into a study. I am on hydroxychloroquine for my Sjogren's (diagnosed in 2016) and the dryness isn't too awful, but the fatigue and pain are getting worse.
Just diagnosed with Sjogrens (systemic). Cervimeline works great for producing saliva. Take it with a small meal (otherwise I get terrible nausea). It gives me hot flashes for about 2 hrs, but still worth it. It hasn't fixed the problems with my sense of taste. Xylimelt stick-on tablets also work. It sticks on your molar & slowly melts so people can see it while you're talking though. Mint flavor is good (light with no aftertaste). The Cinnamon has a gross aftertaste. Celebrex for joint pain helps-ish I have a follow-up appt and hopefully they start me on Plaquenil. Nothing helps my daily fatigue.
Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you. Thanks again for being a part of my community and supporting my work.
I noticed that mouth taping while sleeping not only relieves the mouth dryness a good amount but, believe it or not, my eyes are less dry too when I wake. Maybe less apnea leads to better sleep? Maybe less overall fluid lost due not mouth breathing? It doesn’t take much tape. I use a 2 - 3 cm strip of the tape used in salons during eyelash application. It’s gentle and does the job.
Please give some hope to all the seronegative patients and to all who struggle for a diagnosis (even the lip biopsy can result negative although in a smaller percentage than the blood test) 😢 any effective, present and future treatment for these people? Can you make a video about this? And if these people are not allowed to get treatment, how they should slow the progression of disease? It looks like that seronegative patient or milder cases can’t be treated until they get worse which is absurd to me. Please do a video about this, sorry for the long post. Thank you 🙏
Oh Man i agree! I am 59. Have dry mouth so bad. Joint pain and swelling around ankles and feet. Seronegative. I have had numerous ANA and ENA labs done. But that is it. I am really convinced I have sjogrens. I may try BHRT if i can't get a sjogren's diagnoses.
I was seronegative the first three times I was tested. An opthamology resident suggested I ask for another test at an eye appointment. Saw 3 rheums who all said I was fine. The 4th one ran an “Early Sjögren’s Panel” & it was positive. By this time, I had had SD for 27 years, lost all my upper teeth. You can continue to test, if necessary. Sorry ❤
@@lolitaalmostgrownI did the early SJO panel two weeks ago and it ended up positive! My first rheumatologist said it’s still not enough to get treated and many doctors don’t fully appreciate this test already but it’s definitely something helpful for seronegative patients. But at the end of the day currently it’s crucial to keep looking and finding a rheumatologist willing to treat you with or without a confirmed diagnosis which can be hard but possible. The disease in my case is still at an early stage, it can’t be stopped with stronger medications such as immunosuppressants (that I don’t want to take either) that are given only when more intense symptoms show up such as joints pain that I don’t have yet, but it seems that there’s nothing else that can really stop the progression and keep it to an early stage (a healthy lifestyle and diet and all the tools for palliative care can help feeling better but still don’t stop the disease progression). Plus without a confirmed diagnosis I can’t even participate to clinical trials, it seems there’s no way out for early SJO cases or seronegative patients with even a negative lip biopsy result. They can “only”hope that new medications for them will be found and pray that their symptoms won’t get worse, it’s hard to accept this and it seems absurd to me. If anyone knows of a clinical trial that accepts seronegative patients with a negative lip biopsy result please let me know, I would love to participate! Hoping for a brighter future for everybody, take care ❤
Oh this is so me. Severe dry eyes and joint pain for a decade. Now dry mouth and recurrent salivary gland infections yet no doctor will diagnose me as it's not showing in my bloodwork. Their attitude is that it will when really severe but they can't say I have it until then. What kind of attitude is that?! My optician said i had it when i was 31, scarred corneas from dryness. My dentist said I had it years ago, inadequate saliva and swollen salivary glands. It's so upsetting not getting diagnosis and help
I have sjogren's syndrome and I've been having flares recently. It's hard when you have such fatigue because on top of the sjogren's I also have fibromyalgia. Maybe I could ask my doctor about what you have included in your video. Thank you so much.
I was opposite. Diagnosed Lupus. Watched Dr. Diana and realized my worst symptoms are Sjogrens. Still waiting for help. A shortage of Rhuemotologists complicates getting treatments. This is no way to live
I noticed in one of the threads that someone was having success with dryness by using Sea Buckthorn berries. Is there any support for this? Does anyone have any experience with it?
I’m losing my teeth and already have lost my senses of taste and smell. I have bouts of not being able to swallow and my voice gets very horse. It also takes a terrible toll on the entire intestinal tract. Horrible disease! I was diagnosed with SLE more than 20 years ago and about 10 years ago I was diagnosed with Sjogren’s. The first autoimmune disease I was diagnosed with was Raynaud’s and then Hashimoto’s Thyroiditis. I have so many that different autoimmune diseases that the rheumatologist say “mixed connective tissue disease”.
I was talking Hydroxicichoriquin (plaquinil?..not sure of the spelling) for a couple of years. It didn’t seem to do anything so I quit taking it completely and nothing changed. I have Lupus and Sjogrens. My Rheumatologist gave me injections of Prolia because she said that my bone density showed that my bones had worsened to the point of being like potato chips! Eight years ago (2015) I had arthroscopic surgery on my knee. and I Finally got an answer as to Why I’ve been in so much pain. The orthopedic surgeon told me that my knee has never healed due to Lupus and he wants me on a new injectable medication that I have to get every month. I don’t remember what it’s called but it’s some kind of anti inflammatory medicine. I’m losing hope for Anything that can help me and I’m trying to find any type of a Trial that I can sign up for near where I live. So sorry for my Long Post.
Going off Gluten and taking a excellent brand of fish oil has put me in remission for over 12 years. It’s worth having your life back. And yes a relationship with Jesus Christ has kept me going forward. I am in so much peace and happiness. Please try it. It’s not for short term it takes a while. If your committed you will improve. The Lord bless you! 😊 and lavish his love upon you. ❤
@@kayeabston4157 Hi. I'm new on here but I saw your post about the fish oil. I'm in so much pain and my symptom list now is so long, I can't even believe it. Could you please tell me what brand of fish oil you took? I'm ready to try anything at this point! Thank you so much! God bless you and I'm so glad to hear you're in recovery! 🙏🏼❤️🤗
For my allergies and asthma, I take Omizalamab and that does work for my histimines. I was negative for the Sjogrens blood tests. But hopefully people who need this biological ianalab here works.
FYI the Sjogren's antibody tests are not definitive. I have Sjogren's (systemic) but am seronegative: my SS-A, SS-B and all but 1 rheumatoid factor test is normal. An ophthalmologist specializing in Sjogren's dry eye confirmed mine with the Shirmer's tear test & a stain. So if you have dry eye & the SS symptoms find a dry eye Ophthalmologist that knows what to look for.
@@janemcfarren3258 bless you. I can't get dentures. They would have cut my upper gum to sand extra bone down. I'll wear a mask the rest of my life to hide no teeth.😢 Extreme vertigo damage all my nerves and it caused autoimmune diseases. I even have no flesh in my nose now. Has lesions also from the sjrogens. Painful to breathe through my nose.horrible disease
Hello💙 Can you please do a video on how/why Sjögren’s syndrome turns into Lymphoma? I am undergoing testing right now to try to hopefully rule out Lymphoma but I’m scared.
I have never heard of that…Is that something your Dr told you? That’s scary because I have to look for a Rheumatologist that actually does something…! And my PCP has become so useless as well. I’ve never heard of this turning into Lymphoma! That’s truly scary!
@@tribalclan1Sjogren's increases the risk for B cell and T cell lymphoma by like 39% Those with three to six risk factors have a 39.9 percent chance of developing lymphoma. People with all seven risk factors have nearly a 100 percent chance of being diagnosed with lymphoma at some point. 1-Salivary Gland Enlargement 2-Lymphadenopathy 3-Raynaud’s Phenomenon 4-Anti-Ro/SSA and/or Anti-La/SSB Positivity 5-Rheumatoid Factor Positivity 6-Monoclonal Gammopathies 7-Complement Component 4 Hypocomplementemia Several other symptoms of Sjögren’s syndrome may predict the development of lymphoma: Purpura (red/purple spots) on the body Tongue atrophy, in which the tongue’s texture changes and it may seem to get smaller Cryoglobulinemia (a type of vasculitis that causes inflamed blood vessels) B-cell activation in the immune system
@@jolenewashere1082 Hi , yeah I continue with that and last December he given me and pilocarpine 5 mg two time a day .I am doing okay, thank you 🙏🙋🏻♀️
@@marjanadidi1261 I’ve been on hydrochloroquine for about ten years. I’ve recently lost my job, and medical insurance so I’ve been without medication for 6 months, and I’ve been miserable.
My eye doctor put tubes into my eyes. That and xiidra have been great for me. I have to read a lot. Now? After reading for awhile the words start to get blurry. Xiidra stings a little at first but it does give a lot of relief.
Hello Dr. Diana, I’m a 31 years old woman that got diagnosed with Sjrogen syndrome when I was only 13 years old, my main and severe symptom is dry eyes , my ophthalmologist was the one finding out the diagnosis as he said he never saw a teenager with such a severe dry eyes . Fast forward, I’m currently pregnant and wasn’t on any medications prior, just eye drops. My doctor recommended me to start on plaquenil, however due to my dry eyes I’m afraid my retina will get issues with this medication. My eyes are hurting and I’ll be scheduling with a retina eye doctor. Do you really think plaquenil is effective for pregnancy to avoid fetus getting my SSA and SSB antibodies from me ? And causing congenital heart diseases? I’ve heard it’s so rare and I don’t know if it’s worth it to continue on plaquenil with my eye pain.
It's understandable to have concerns about medications during pregnancy, especially with underlying conditions. Consulting with a retina eye doctor is a wise decision to address your specific eye health concerns.
I was diagnosed at 18 so can sympathetise anyone having it very young as it can have so many symptoms overlapping with other conditions which is complicated to manage.
Thank you. I are ready to experiment with new medication for this. I need help to bring my pain level down, vision dry mouth. I appreciate how much you offer to us trying to help ease our suffering. It seems my muscle stiffness is coming from Lupus. I have not read of anyone complaining of muscle atrophy from regular use in their arms or legs. i can control it some using tramadol and relefen but it still requires me to get a painful trigger shot about three months when they start to flare up and to care for myself it is impossible for me to not do anything . Too much time alone and it get depressed. I am finishing up my degree which hopefully will give me a decent job with some benefits. A bit of challend to find a safe place to work. I see nothing positive in coming into a place and demanding a lot of changed be made so I can do my job well. Yet I have C-PTSD too and being home alone is so uncomfortable though secure. I just hope next year to find a job so I can be useful to others and in turn to myself.
Thanks very much for your videos. Are there any updates on the efficacy of dazodalibep for Sjogren's disease? Also, would you be able to do a video on daratumumab efficacy in Sjogren's disease? It seems plasma cells are a major issue in Sjogren's disease?
Thank you so much-and thanks for your excellent videos, I have found them very helpful when talking to my doctors-o wish all doctors were made to watch them!
Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you. Thanks again for being a part of my community and supporting my work.
Hey doctor thanks for your info. My son he’s a seven year old and his blood test turned positive and 1:320 and sense he’s one year old his glands get swollen but this time they did in ultrasound and they said it had two do with sjogrens but he shows no symptoms and know seeing rheumatologist . Am ver scared and if he has it how come tell he shows no symptoms. What do you think. I appreciate it very much if you could reply thankyou.
It’s a progressive disease and will show signs gradually ... not to scare you bcs it’s a fact and me too a bird of same feather -- it’s a myth that sjogren only affect female and me itself being a man had this disease for years ... there is no cure for this cursed disease only management is possible .... symptoms can start from dry mouth , eye , to learning disabilities to swallowing to breathing to psychological like anxiety and depression .... pls be with him always.... it’s not his fault but genes that transferred to him from you and ur husband turns culprit... sorry if my reply seems little hard bcs I am also a scape goat of this disease .... may be a curse I got from god
I got twice Rituximab, but it didn't work so well. The last I get Feb 2023. Sometimes I paralyzed, then I can walk again. Recently I paralazed for 3 days. Should I get Rituximab again? Thank you
I am unable to answer medical questions without knowing the details and having a medical consultation. Thank you for watching my videos and taking the time to comment! subscribe and share my channel to be able to help other people!
@@rheumatologistoncallhis is the problem. If you are 'sero negative' Sjogrens it is hard to get treatment. Most doctors (UK) do not take your symptoms seriously but yet you suffer just as people who do have positive SS blood tests. Please could you do a video about sero negative Sjogren's as it is a big problem. Is sero negative Sjogrens actually a different condition?Thank you.
@@jilljones4566it’s definitely a problem. Even Sjorgrens I’ve found not widely known about so my Uk GP has dismissed my symptoms for 7 years. Feels like a long road to just get a diagnosis.
I also wonder if anybody knows about swelling in the soft tissue under the tongue , will this cause dry mouth ,dentist was quite concerned doctor wasn't bothered had a barium swallow nothing showed up , Went to another female gp ,who fished around in my mouth and told me their was no lump , very strange as their is , It's seems to go up and down in size thought it may be a blocked salivary duct , but no amount of quizzing my gp or promoting him , proved fruitful , that was 6 years ago now still getting dry mouth etc and lump is still their ,! Any clues ??
This medication has bad side effects. I'm already vision impaired and don't want to risk blindness which can happen 6 years after stopping this med, Beware.
My eyes burn and itch and my whole body hurts like a muscle sore. Burning pain in the entire oral cavity, tongue and throat. I'm sick of eating and talking. I have no enlarged nodes and no swelling on my neck or face. My oral microflora is normal I used contraception, antidepressants, antipsychotics and antihistamines for a long time. So after these medicines I had a dry mouth. And in childhood I had swelling and bruising from my temple to the salivary glands on my face - an accident. It wasn't serious. My grandfather used to give me acetic ointment there. When someone slapped me in the face with a fist, I had a problem with saliva and eating. When I was sick, my entire oral cavity - sled and sled joint, ears and teeth hurt. But the teeth were fine. I had difficulty eating and swallowing. Severe pain and swollen nodes. No one has addressed this. A few times I was blown by the icy wind and the pain started. I have to cover myself if the wind blows. My ears also tingled in the summer. I put drops in my ears and it helped. A headscarf to cover the ears and, when the wind is strong, also the face.
As a person with favism, it is not recommended for me to take immunosuppressants. I have Sjogren, Can a strict diet and anti-inflammatory supplements reduce inflammation? Are there any trials for this in the UK?
I find that the less sugar you have the better. And also 'sugar free' stuff. So less sweetness reduces inflammation drastically for me. Also turmeric + black pepper and a good quality Omega 3 have been great for me personally. Everyone is different but trust me on the sweetness. I was diagnosed 15 years ago and tried most of the joint care supplements on the market. You can even mix tumeric and olive or castor oil and rub into inflamed joints. Bit messy though 😉 Good luck hope this helps a bit. 💞🙏
Yes, but you HAVE to be super strict in your diet. Not even a grain of inflammatory foods. I'm on a low FODMAP diet that is also gluten, dairy and sugar free. All high FODMAP foods are inflammatory. Garlic and onions are high FODMAPS. Look up the AIP diet as well.
It's important to consult with your healthcare provider for the best treatment options for RA and Sjogren's. Keep exploring different approaches and stay positive.
Buenas tardes , estoy en la Ciudad de México , Cómo puedo acceder a el tratamiento Ianalumab, Donde puedo solicitar una inscripción para el tratamiento?? Es la primera vez que escucho una explicación sobre posibles tratamientos sin efectos colaterales ❤
I really appreciate you making this video. My ex of 7 years cheated and gave me herpes infection during our relationship and I was devastated. You’ve made me feel so much better doctor Igudia and seeing all these people share their testimonies about your cure
Yes, I read about that last night and I tried to get a good understanding of that concept. I don't think that suppressing the immune system with drugs is correct but a lot of doctors do that. The medical Medium always says there is no way your body attacks itself, it is just going after viruses and bacteria and says that the doctors have it wrong. I tend to believe that more because it just makes sense.
not as far as I know.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you. Thanks again for being a part of my community and supporting my work.
Hello Doctor, I was diagnosed with sjogren a year ago and have been taking hydroxychloroquine. Since then, after shower my body (mostly bottom part) gets intolerably itchy. Taking shower has became a nightmare. Do you have any suggestions for me? Is their any other med other than steroid or hydroxychloroquine that can help me?
I'm sorry to hear about your struggles with itching after showering. It's important to discuss this with your doctor so they can provide personalized advice and explore alternative medications or treatments that may be more suitable for you.
Informative video, however, nomenclature matters. At the last International Symposium, the term "syndrome" was replaced with the term "disease". In other words, Sjogren's Disease. Also, the terms "primary" and "secondary" are outdated and should be dropped. Like RA, SLE, and SSc Sjogren's is a stand-alone systemic medical condition that can impact every organ in the body.
Thank you for watching! Majority of patients needs information that is pertinent to their needs and easy to understand. This is not a video for physicians. Once again thank you for taking the time
Yay! I was always told there was NO treatment for the underlying disease... only symptomatic treatments for dry eye, mouth, etc. That's what's prevented me from seeking a diagnosis. What's the point if you can't even treat it? Don't nobody want a painful lip biopsy for nothing. 😝 But after watching vids on here I'm now worried about heart damage, interstitial lung disease & kidney problems so... yeah.
Why do doctors immediately rush to pharmaceuticals? Why don't they treat the diet first? I went on Carnivore, after decades of hell. Most of my symptons are gone, including my floaters and cataracts in my eyes. My eyesight has improved significantly! That was a bonus! I am not a doctor, and this is not medical advice. I just suggest people research this lifechanging, lifesaving incredible way of life. I will never go back to the SAD (Standard American Diet). Side fact: The Greek word "PHARMAKEIA" in the Bible translated to English is "sorcery", or 'witchcraft". This is where we get our words pharmacy, pharmacist, pharmaceutical, Big Pharma, etc. from. Just saying....
@@rheumatologistoncall umm....people are asking you questions and they are not being addressed when you say "thank you for watching my video." Can you answer some of the questions because I have the same ones. What can be done for seronegative patients? Can any of these treatments address the dryness? If seronegative patients don't get treated, what will happen? All excellent questions and not being addressed. Thank you.
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It seems mind blowing that Sjögren’s is supposed to be the second most common rheumatic disease, yet it’s highly underdiagnosed and the treatment options seem to lag behind all other rheumatic diseases. I also have psoriatic arthritis and thought that was bad enough that treatment options and research lag far behind other types of arthritis. Now I’ve been told I have Sjögren’s as well, and I can’t believe how many people have been offered nothing apart from moisturise/lubricate every dry part of your body for the rest of your life! Sjögren’s kills people, and even most doctors seem to view it as a “nuisance dryness syndrome,” not a systemic autoimmune disease. I have to wonder if the fact most people with Sjögren’s are middle aged women (like me) is why it’s been dismissed as no big deal for all these years…
It's truly frustrating to hear how underdiagnosed and overlooked Sjögren’s is, especially considering its serious nature. Your experiences highlight the need for more awareness and better treatment options for all autoimmune diseases.
I have sjogren,s I have many problems but listening to you I realize it’s sjogrens and I didn’t know what it was .I live in Canada in a small town. In the west when I go back to my m.D I am going to tell her how much I have learned .Thank you Mary ❤
Sorry to hear that! Thank you for watching my channel! share with others to learn!
Sjogren's leads to Lymphoma cancer. Stay on top of your Sjogren's.
Once i focused on gut health and killing the overgrowth of candida, I saw improvement. Sugar detox, gluten-free diet, and 100 billion probiotics. It seems like it's about what you put or don't put in your body!! It nice to know new treatment is available.
thank you for watching!
Swishing coconut oil in my mouth helps with dry mouth at night.
Thank you!!!
I will do tonight❤
Wow ill try that anything to easy dry mouth 😢
I use a half of a 5 mg tablet of pilocarpine at a time.
Oil pulling 🙌🏽 it’s an Ayurvedic treatment
@@caroleellison3676 Biotene Mouthwash. But could stain teeth.
I have had two treatments with Rituximab , after the first treatment I was pain free for seven months but after the second treatment my pain returned after six weeks, I don’t know why such a different outcome. Thank you for your videos 😊
I'm on Rituxan too, I'm about to have my 4th dose - 2 years in. It's been helping with neurological symptoms when nothing else worked. It does take time to work, like 2 years.
Check your dose, make sure you are getting a high dose not 500. The first dose is a loading dose and higher. With autoimmune we need the loading dose every 6 months. I didn't do as well on the lower dose. I was also switched to a generic version which didn't work as well, make sure you are getting whatever you received when it worked best.
Same for me. First one lasted 2 years second one 6 months
Thanks for sharing. Besides Sjodren's are there any other autoimmune diseases that have a positive reaction ?
I was diagnosed with ITP in 2002 and my hematologist decided to try Rituximab, as I was miserable on Prednisone. It was hideously expensive, even with insurance, and I turned out to be allergic to it. Thank you for the information about Lanalumab; I am going to try to get into a study. I am on hydroxychloroquine for my Sjogren's (diagnosed in 2016) and the dryness isn't too awful, but the fatigue and pain are getting worse.
Low-dose naltrexone for pain.
I WAS ON PLAQUENIL FOR ABOUT 7 YEARS BUT I STARTED GETTING RETINA TOXCITY AND WAS TAKEN OFF OF DRUG.
@@lhu6971I'm so sorry. Is your vision ok now?
Side effects are diarrhea, dizziness, ligament sprain, upper respiratory tract infection, contusion, device allergy, fatigue, hypertension, and oropharyngeal pain.
Thanks for the heads up on the possible side effects, stay strong!
I have it too. All sounds so familiar.
Just diagnosed with Sjogrens (systemic). Cervimeline works great for producing saliva. Take it with a small meal (otherwise I get terrible nausea). It gives me hot flashes for about 2 hrs, but still worth it. It hasn't fixed the problems with my sense of taste. Xylimelt stick-on tablets also work. It sticks on your molar & slowly melts so people can see it while you're talking though. Mint flavor is good (light with no aftertaste). The Cinnamon has a gross aftertaste.
Celebrex for joint pain helps-ish
I have a follow-up appt and hopefully they start me on Plaquenil. Nothing helps my daily fatigue.
I'm sorry to hear about your diagnosis. Thank you for sharing your experience and tips with the community.
@@dsuitor304 I loved that but caused severe fluid build up in lungs. Came down with respiratory issues and wheezing. Happened 2 separate occasions
I have found Xylimetls for dry mouth very helpful for overnight while sleeping.
Great tip! Thanks for watching my video!
I has humira in the past for a different medical issue and it cleared up most of my primary sjorgrens symptoms. Wish I could get it again!!
Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
Thanks again for being a part of my community and supporting my work.
Hi did it help with dry eyes and mouth or just joint pain
Humera didn't help at all
Any side effects?
I noticed that mouth taping while sleeping not only relieves the mouth dryness a good amount but, believe it or not, my eyes are less dry too when I wake. Maybe less apnea leads to better sleep? Maybe less overall fluid lost due not mouth breathing? It doesn’t take much tape. I use a 2 - 3 cm strip of the tape used in salons during eyelash application. It’s gentle and does the job.
Thank you for watching my video, dont forget to subscribe to my channel for other videos!
I am glad that there is something
Thank you Dr😊
My pleasure
Please give some hope to all the seronegative patients and to all who struggle for a diagnosis (even the lip biopsy can result negative although in a smaller percentage than the blood test) 😢 any effective, present and future treatment for these people? Can you make a video about this? And if these people are not allowed to get treatment, how they should slow the progression of disease? It looks like that seronegative patient or milder cases can’t be treated until they get worse which is absurd to me. Please do a video about this, sorry for the long post. Thank you 🙏
Oh Man i agree! I am 59. Have dry mouth so bad. Joint pain and swelling around ankles and feet. Seronegative. I have had numerous ANA and ENA labs done. But that is it. I am really convinced I have sjogrens. I may try BHRT if i can't get a sjogren's diagnoses.
I was seronegative the first three times I was tested. An opthamology resident suggested I ask for another test at an eye appointment. Saw 3 rheums who all said I was fine. The 4th one ran an “Early Sjögren’s Panel” & it was positive. By this time, I had had SD for 27 years, lost all my upper teeth. You can continue to test, if necessary. Sorry ❤
@@lolitaalmostgrownI did the early SJO panel two weeks ago and it ended up positive! My first rheumatologist said it’s still not enough to get treated and many doctors don’t fully appreciate this test already but it’s definitely something helpful for seronegative patients. But at the end of the day currently it’s crucial to keep looking and finding a rheumatologist willing to treat you with or without a confirmed diagnosis which can be hard but possible. The disease in my case is still at an early stage, it can’t be stopped with stronger medications such as immunosuppressants (that I don’t want to take either) that are given only when more intense symptoms show up such as joints pain that I don’t have yet, but it seems that there’s nothing else that can really stop the progression and keep it to an early stage (a healthy lifestyle and diet and all the tools for palliative care can help feeling better but still don’t stop the disease progression). Plus without a confirmed diagnosis I can’t even participate to clinical trials, it seems there’s no way out for early SJO cases or seronegative patients with even a negative lip biopsy result. They can “only”hope that new medications for them will be found and pray that their symptoms won’t get worse, it’s hard to accept this and it seems absurd to me. If anyone knows of a clinical trial that accepts seronegative patients with a negative lip biopsy result please let me know, I would love to participate! Hoping for a brighter future for everybody, take care ❤
Oh this is so me. Severe dry eyes and joint pain for a decade. Now dry mouth and recurrent salivary gland infections yet no doctor will diagnose me as it's not showing in my bloodwork. Their attitude is that it will when really severe but they can't say I have it until then. What kind of attitude is that?! My optician said i had it when i was 31, scarred corneas from dryness. My dentist said I had it years ago, inadequate saliva and swollen salivary glands. It's so upsetting not getting diagnosis and help
@@roisinmc7442 maybe you should make an appt with a Rheumatologist.
I have sjogren's syndrome and I've been having flares recently. It's hard when you have such fatigue because on top of the sjogren's I also have fibromyalgia. Maybe I could ask my doctor about what you have included in your video. Thank you so much.
Do you know that many false confuse fibromyalgia with sjörgen.
I tend to assign most symptoms I have to Sjogrens, but I have realized that these symptoms can be from other conditions.
check my other videos! Thank you!
I was opposite. Diagnosed Lupus. Watched Dr. Diana and realized my worst symptoms are Sjogrens. Still waiting for help.
A shortage of Rhuemotologists complicates getting treatments.
This is no way to live
Thank you so much for your videos!
Thank you for supporting my mission!!!
I noticed in one of the threads that someone was having success with dryness by using Sea Buckthorn berries. Is there any support for this? Does anyone have any experience with it?
It is rich in vital omega acids
Keep up the Good Work.👍
Thank you for watching
Thank you Doctor ❤
Thank you for watching
The emotional component of autoimmune is relationship issues.
next week I have a video just about that!!!
Excellent video!
Thank you 🙏🏻
I’m losing my teeth and already have lost my senses of taste and smell. I have bouts of not being able to swallow and my voice gets very horse. It also takes a terrible toll on the entire intestinal tract. Horrible disease! I was diagnosed with SLE more than 20 years ago and about 10 years ago I was diagnosed with Sjogren’s. The first autoimmune disease I was diagnosed with was Raynaud’s and then Hashimoto’s Thyroiditis. I have so many that different autoimmune diseases that the rheumatologist say “mixed connective tissue disease”.
I'm in the same boat with you. Hypothyroidism, SLE, Sjogren's along with Vitiligo.
Thank you for watching my channel! share with others to learn!
Read Beat Autoimmune by Palmer Kippola
I was talking Hydroxicichoriquin (plaquinil?..not sure of the spelling) for a couple of years. It didn’t seem to do anything so I quit taking it completely and nothing changed. I have Lupus and Sjogrens. My Rheumatologist gave me injections of Prolia because she said that my bone density showed that my bones had worsened to the point of being like potato chips! Eight years ago (2015) I had arthroscopic surgery on my knee. and I Finally got an answer as to Why I’ve been in so much pain. The orthopedic surgeon told me that my knee has never healed due to Lupus and he wants me on a new injectable medication that I have to get
every month. I don’t remember what it’s called but it’s some kind of anti inflammatory medicine. I’m losing hope for Anything that can help me and I’m trying to find any type of a Trial that I can sign up for near where I live. So sorry for my Long Post.
thank you for watching!!!
Very sorry to hear about it pain , I will pray for u
I believe that Jesus can heal u
In Jesus Holy Mighty Name! Amen. 💜✝️💜
Going off Gluten and taking a excellent brand of fish oil has put me in remission for over 12 years. It’s worth having your life back. And yes a relationship with Jesus Christ has kept me going forward. I am in so much peace and happiness. Please try it. It’s not for short term it takes a while. If your committed you will improve. The Lord bless you! 😊 and lavish his love upon you. ❤
@@kayeabston4157 Hi. I'm new on here but I saw your post about the fish oil. I'm in so much pain and my symptom list now is so long, I can't even believe it. Could you please tell me what brand of fish oil you took? I'm ready to try anything at this point! Thank you so much! God bless you and I'm so glad to hear you're in recovery! 🙏🏼❤️🤗
For my allergies and asthma, I take Omizalamab and that does work for my histimines. I was negative for the Sjogrens blood tests. But hopefully people who need this biological ianalab here works.
It's great to hear that Omizalamab is helping you with your allergies and asthma!
FYI the Sjogren's antibody tests are not definitive. I have Sjogren's (systemic) but am seronegative: my SS-A, SS-B and all but 1 rheumatoid factor test is normal. An ophthalmologist specializing in Sjogren's dry eye confirmed mine with the Shirmer's tear test & a stain. So if you have dry eye & the SS symptoms find a dry eye Ophthalmologist that knows what to look for.
Due to sjrogens I'm losing my teeth. Splitting, hollowing,shrinking. 😢
Same here 😢
@@janemcfarren3258 bless you. I can't get dentures. They would have cut my upper gum to sand extra bone down. I'll wear a mask the rest of my life to hide no teeth.😢 Extreme vertigo damage all my nerves and it caused autoimmune diseases. I even have no flesh in my nose now. Has lesions also from the sjrogens. Painful to breathe through my nose.horrible disease
Even my fillings are falling out 😮
@@curiouskitty7972 mine too. Have to go in soon to replace
I going to have all bottom teeth removed and wear a denture on the bottom
Hello💙 Can you please do a video on how/why Sjögren’s syndrome turns into Lymphoma? I am undergoing testing right now to try to hopefully rule out Lymphoma but I’m scared.
i will do that
@@rheumatologistoncallThank you so much in advance :)
I have never heard of that…Is that something your Dr told you? That’s scary because I have to look for a Rheumatologist that actually does something…! And my PCP has become so useless as well. I’ve never heard of this turning into Lymphoma! That’s truly scary!
@tribalclan1 yes, and you can look it up as well.
@@tribalclan1Sjogren's increases the risk for B cell and T cell lymphoma by like 39% Those with three to six risk factors have a 39.9 percent chance of developing lymphoma.
People with all seven risk factors have nearly a 100 percent chance of being diagnosed with lymphoma at some point.
1-Salivary Gland Enlargement
2-Lymphadenopathy
3-Raynaud’s Phenomenon
4-Anti-Ro/SSA and/or Anti-La/SSB Positivity
5-Rheumatoid Factor
Positivity
6-Monoclonal Gammopathies
7-Complement Component 4 Hypocomplementemia
Several other symptoms of Sjögren’s syndrome may predict the development of lymphoma:
Purpura (red/purple spots) on the body
Tongue atrophy, in which the tongue’s texture changes and it may seem to get smaller
Cryoglobulinemia (a type of vasculitis that causes inflamed blood vessels)
B-cell activation in the immune system
My dr give it to me hydrochloroquine for one month and I am going to see him in June .Thank you ❤
thank you for watching my videos!
what happened did you get well
@@jolenewashere1082 Hi , yeah I continue with that and last December he given me and pilocarpine 5 mg two time a day .I am doing okay, thank you 🙏🙋🏻♀️
@@marjanadidi1261 I’ve been on hydrochloroquine for about ten years. I’ve recently lost my job, and medical insurance so I’ve been without medication for 6 months, and I’ve been miserable.
My eye doctor put tubes into my eyes. That and xiidra have been great for me. I have to read a lot. Now? After reading for awhile the words start to get blurry. Xiidra stings a little at first but it does give a lot of relief.
rheumatologistoncall.com/free-resources/
Hello Dr. Diana, I’m a 31 years old woman that got diagnosed with Sjrogen syndrome when I was only 13 years old, my main and severe symptom is dry eyes , my ophthalmologist was the one finding out the diagnosis as he said he never saw a teenager with such a severe dry eyes . Fast forward, I’m currently pregnant and wasn’t on any medications prior, just eye drops. My doctor recommended me to start on plaquenil, however due to my dry eyes I’m afraid my retina will get issues with this medication. My eyes are hurting and I’ll be scheduling with a retina eye doctor. Do you really think plaquenil is effective for pregnancy to avoid fetus getting my SSA and SSB antibodies from me ? And causing congenital heart diseases? I’ve heard it’s so rare and I don’t know if it’s worth it to continue on plaquenil with my eye pain.
It's understandable to have concerns about medications during pregnancy, especially with underlying conditions. Consulting with a retina eye doctor is a wise decision to address your specific eye health concerns.
plaquenil is the safest during pregnancy
@@Voop12345 hi Voop, I am also your age. How is your experience with pregnancy?. Feel free to reach out.
I was diagnosed at 18 so can sympathetise anyone having it very young as it can have so many symptoms overlapping with other conditions which is complicated to manage.
Thank you. I are ready to experiment with new medication for this. I need help to bring my pain level down, vision dry mouth. I appreciate how much you offer to us trying to help ease our suffering. It seems my muscle stiffness is coming from Lupus. I have not read of anyone complaining of muscle atrophy from regular use in their arms or legs. i can control it some using tramadol and relefen but it still requires me to get a painful trigger shot about three months when they start to flare up and to care for myself it is impossible for me to not do anything . Too much time alone and it get depressed.
I am finishing up my degree which hopefully will give me a decent job with some benefits. A bit of challend to find a safe place to work. I see nothing positive in coming into a place and demanding a lot of changed be made so I can do my job well. Yet I have C-PTSD too and being home alone is so uncomfortable though secure. I just hope next year to find a job so I can be useful to others and in turn to myself.
Thank you for watching the videos!
@@pennyc11 don’t forget to go for walks, help me with my loneliness. 🫶
Appreciated! Give me the name of the medicine that eliminates dehydration abd dryness please 🙏🏻
Check my channel for other videos
Hi Dr. Diana. Is Ianalumab available yet please? 🙏🏻
not yet, still in clinical trials
Thanks very much for your videos. Are there any updates on the efficacy of dazodalibep for Sjogren's disease? Also, would you be able to do a video on daratumumab efficacy in Sjogren's disease? It seems plasma cells are a major issue in Sjogren's disease?
I will look into it, yes
Thank you so much-and thanks for your excellent videos, I have found them very helpful when talking to my doctors-o wish all doctors were made to watch them!
Hi Dr Diana. How does rituximab helps with Sjogren syndrome lung manifestation? could you kindly further explain this? Thank you.
Thank you for watching my video, dont forget to subscribe to my channel for other videos!
She literally didn't answer you. Smh
@MsLusciousclick . Perhaps the answer is in another video. K
Dr. I hope it will work. The suffering is real and so tired of all of meds.
Thank you for watching the videos!
Rituxan hasn't helped much with dryness but it sure has helped my Sjogren's neuro symptoms.
Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
Thanks again for being a part of my community and supporting my work.
Hey doctor thanks for your info. My son he’s a seven year old and his blood test turned positive and 1:320 and sense he’s one year old his glands get swollen but this time they did in ultrasound and they said it had two do with sjogrens but he shows no symptoms and know seeing rheumatologist . Am ver scared and if he has it how come tell he shows no symptoms. What do you think. I appreciate it very much if you could reply thankyou.
It’s a progressive disease and will show signs gradually ... not to scare you bcs it’s a fact and me too a bird of same feather -- it’s a myth that sjogren only affect female and me itself being a man had this disease for years ... there is no cure for this cursed disease only management is possible .... symptoms can start from dry mouth , eye , to learning disabilities to swallowing to breathing to psychological like anxiety and depression .... pls be with him always.... it’s not his fault but genes that transferred to him from you and ur husband turns culprit... sorry if my reply seems little hard bcs I am also a scape goat of this disease .... may be a curse I got from god
I got twice Rituximab, but it didn't work so well. The last I get Feb 2023. Sometimes I paralyzed, then I can walk again. Recently I paralazed for 3 days. Should I get Rituximab again? Thank you
I am unable to answer medical questions without knowing the details and having a medical consultation.
Thank you for watching my videos and taking the time to comment! subscribe and share my channel to be able to help other people!
Can these treatments be used if you do not have Sjogrens antibodies?
No!
@@rheumatologistoncallhis is the problem. If you are 'sero negative' Sjogrens it is hard to get treatment. Most doctors (UK) do not take your symptoms seriously but yet you suffer just as people who do have positive SS blood tests. Please could you do a video about sero negative Sjogren's as it is a big problem. Is sero negative Sjogrens actually a different condition?Thank you.
@@jilljones4566it’s definitely a problem. Even Sjorgrens I’ve found not widely known about so my Uk GP has dismissed my symptoms for 7 years. Feels like a long road to just get a diagnosis.
@@jilljones4566i am in this boat too. If you hear of any helpful uk rheumatologists please let me know
What about Plaquenil?
that can work too!
I also wonder if anybody knows about swelling in the soft tissue under the tongue , will this cause dry mouth ,dentist was quite concerned doctor wasn't bothered had a barium swallow nothing showed up , Went to another female gp ,who fished around in my mouth and told me their was no lump , very strange as their is ,
It's seems to go up and down in size thought it may be a blocked salivary duct , but no amount of quizzing my gp or promoting him , proved fruitful , that was 6 years ago now still getting dry mouth etc and lump is still their ,! Any clues ??
Unfortunately I can’t give you medical advice here. Thank you for sharing your experience!
Please change your microphone. It’s sounds so muddy. I love learning from you as a Sjogrens and Lupus sufferer.
Can you suggest me a microphone?
Check your speakers. It’s very clear through my phone.
Does hydroxychloroquine work on Sjogren's syndrome?
YES, it does!
Thank you SOO MUCH for watching my channel!
This medication has bad side effects. I'm already vision impaired and don't want to risk blindness which can happen 6 years after stopping this med, Beware.
I have ankylosing hlab27..and i have dry mouth all the time..
Thank you for watching my channel! Share the information with others in need!
Try Xylimelts.
Does Cellcept alleviate the symptoms? TIA
it may, not sure!Thank you for watching my videos!
Multumesc mult .
cu drag!
What is the difference between Sjögren’s syndrome and Sjögren’s disease?
it is the same!
My eyes burn and itch and my whole body hurts like a muscle sore. Burning pain in the entire oral cavity, tongue and throat. I'm sick of eating and talking.
I have no enlarged nodes and no swelling on my neck or face.
My oral microflora is normal
I used contraception, antidepressants, antipsychotics and antihistamines for a long time. So after these medicines I had a dry mouth.
And in childhood I had swelling and bruising from my temple to the salivary glands on my face - an accident. It wasn't serious. My grandfather used to give me acetic ointment there.
When someone slapped me in the face with a fist, I had a problem with saliva and eating.
When I was sick, my entire oral cavity - sled and sled joint, ears and teeth hurt. But the teeth were fine. I had difficulty eating and swallowing. Severe pain and swollen nodes.
No one has addressed this. A few times I was blown by the icy wind and the pain started. I have to cover myself if the wind blows.
My ears also tingled in the summer. I put drops in my ears and it helped. A headscarf to cover the ears and, when the wind is strong, also the face.
Thank you for sharing your experiences. It's important to seek medical advice for such persistent symptoms. I hope you find relief soon.
As a person with favism, it is not recommended for me to take immunosuppressants. I have Sjogren, Can a strict diet and anti-inflammatory supplements reduce inflammation? Are there any trials for this in the UK?
Thank you for watching my videos!please feel free to share the knowledge with others!
I find that the less sugar you have the better. And also 'sugar free' stuff. So less sweetness reduces inflammation drastically for me. Also turmeric + black pepper and a good quality Omega 3 have been great for me personally. Everyone is different but trust me on the sweetness. I was diagnosed 15 years ago and tried most of the joint care supplements on the market. You can even mix tumeric and olive or castor oil and rub into inflamed joints. Bit messy though 😉
Good luck hope this helps a bit. 💞🙏
Yes, but you HAVE to be super strict in your diet. Not even a grain of inflammatory foods. I'm on a low FODMAP diet that is also gluten, dairy and sugar free. All high FODMAP foods are inflammatory. Garlic and onions are high FODMAPS. Look up the AIP diet as well.
@@curiouskitty7972 You are very spot on about sugar in your diet
Thanks
i have Ra and Sjogran can this be cured ?..i have been taking tablets no result😢😢
It's important to consult with your healthcare provider for the best treatment options for RA and Sjogren's. Keep exploring different approaches and stay positive.
Buenas tardes , estoy en la Ciudad de México ,
Cómo puedo acceder a el tratamiento Ianalumab,
Donde puedo solicitar una inscripción para el tratamiento??
Es la primera vez que escucho una explicación sobre posibles tratamientos sin efectos colaterales ❤
I recommend contacting your local healthcare provider or reaching out to the manufacturer for more information on accessing Ianalumab in Mexico.
@@rheumatologistoncall ❤️
My cancer came back . I stopped chemo.
Thanks for sharing
Bonsoir, merci pour vos videos !
Pouvez-vous mettre les commentaires en Francais ??? Merci !
I am unable to change the comments in french!
I thought this was going to be helpful. But it seems to me there is nothing to help yet. Disappointing 😢😢😢
This is a dreadful disease and l haven't found help either.
I agree. I was disappointed. I'm asking my rheumy doctor about a trial.
I really appreciate you making this video.
My ex of 7 years cheated and gave me herpes infection during our relationship and I was devastated.
You’ve made me feel so much better doctor Igudia and seeing all these people share their testimonies about your cure
I'm glad the video could provide some comfort during a tough time.
Thanks
Welcome
'Monoclonal antibodies' has me nervous. I have heard that in the news...
Don't get medical advice from the 'news'. Read JAMA or medical journals instead.
Yes, I read about that last night and I tried to get a good understanding of that concept. I don't think that suppressing the immune system with drugs is correct but a lot of doctors do that. The medical Medium always says there is no way your body attacks itself, it is just going after viruses and bacteria and says that the doctors have it wrong. I tend to believe that more because it just makes sense.
Is Ocrelizumab one of these treatments?
not as far as I know.Thank you for taking the time to watch my RUclips channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
Thanks again for being a part of my community and supporting my work.
Sjogrens is giving me a really hard time I am so tired and fatigue everyday plus the headaches
Please help😢
Thank you for watching my videos!
Thank you
You're welcome
Hello Doctor, I was diagnosed with sjogren a year ago and have been taking hydroxychloroquine. Since then, after shower my body (mostly bottom part) gets intolerably itchy. Taking shower has became a nightmare. Do you have any suggestions for me? Is their any other med other than steroid or hydroxychloroquine that can help me?
I'm sorry to hear about your struggles with itching after showering. It's important to discuss this with your doctor so they can provide personalized advice and explore alternative medications or treatments that may be more suitable for you.
Informative video, however, nomenclature matters. At the last International Symposium, the term "syndrome" was replaced with the term "disease". In other words, Sjogren's Disease. Also, the terms "primary" and "secondary" are outdated and should be dropped. Like RA, SLE, and SSc Sjogren's is a stand-alone systemic medical condition that can impact every organ in the body.
Thank you for watching! Majority of patients needs information that is pertinent to their needs and easy to understand. This is not a video for physicians. Once again thank you for taking the time
@@rheumatologistoncall0:14
SJOGRENS IS THE VERY SUDE EFFECT OF HISTAMINE INTOLERANCE
rheumatologistoncall.com/free-resources/
Yay! I was always told there was NO treatment for the underlying disease... only symptomatic treatments for dry eye, mouth, etc. That's what's prevented me from seeking a diagnosis. What's the point if you can't even treat it? Don't nobody want a painful lip biopsy for nothing. 😝 But after watching vids on here I'm now worried about heart damage, interstitial lung disease & kidney problems so... yeah.
Thank you for watching!
@@MsNooneinparticular Biopsia buzei nu doare. Este ca o extractie de dinte. Sanatate si numai bine!
Why do doctors immediately rush to pharmaceuticals? Why don't they treat the diet first? I went on Carnivore, after decades of hell. Most of my symptons are gone, including my floaters and cataracts in my eyes. My eyesight has improved significantly! That was a bonus!
I am not a doctor, and this is not medical advice. I just suggest people research this lifechanging, lifesaving incredible way of life. I will never go back to the SAD (Standard American Diet).
Side fact: The Greek word "PHARMAKEIA" in the Bible translated to English is "sorcery", or 'witchcraft". This is where we get our words pharmacy, pharmacist, pharmaceutical, Big Pharma, etc. from. Just saying....
It's great to hear about your positive experience with your diet change! It's important to consider all options for improving health.
Espoir 😊
It's lyme deases!!
rheumatologistoncall.com/free-resources/
Definitely not interested in pharmaceutical meds.
Thank you! Please subscribe to my channel!
..... so....where is the good news???? I
Thank you for watching my video, dont forget to subscribe to my channel for other videos!
@@rheumatologistoncall umm....people are asking you questions and they are not being addressed when you say "thank you for watching my video." Can you answer some of the questions because I have the same ones. What can be done for seronegative patients? Can any of these treatments address the dryness? If seronegative patients don't get treated, what will happen? All excellent questions and not being addressed. Thank you.