Видео

You still on it?

Thank you!it helps me a lot

I was diagnosed in 1996 with lupus over the course of the years, all I've been told to take antidepressants. I'm not a depressed person. I'm very up most of the time. Even when things are bad I'll still find something to laugh about.. The problem is if you're not depressed, you're not clinically depressed , antidepressants can really screw you up. I've tried a number of them and they've all been disasters. Amitriptyline 6 months walking in my sleep. Couldn't think couldn't reason. Not to mention that they turn off your control buttons. I truly believe a lot of doctors are drugging lupus patients with antidepressants just to shut us. They don't have to listen to us. But that's just my opinion.

This is me! ANA is negative, but I have majority of the symptoms! I tested positive about 8yrs ago, but since then I’ve been testing negative. It’s almost not a day that goes by that I’m not in PAIN!😢 I also have days and especially nights where I itch non stop. I’ll get a rash on my hand every blue moon, but I get thrush on my tongue often. It’s so much pain….😢 I have spikes ever so many months where my legs and arms inflate more than normal, and I spike fevers up to 105. It last anywhere from 24 to 72 hours. 😭 They say “O it’s fibromyalgia!”My CSR and ESR are off the charts!

I think apart from ANA there is another antibody test for Lupus such as anti dsdna. If the Dr. is rheumatologist they know what tests should be administered.

I have a positive RNP and positive C4 & C3 and my Dr has never said anything. Also, positive SS-B and positive RA factor PLUS STIFF PERSON SYNDROME. I’m also from upstate New York and moved south. I switched drs but I’m waiting to see if I can be seen sooner than November! Thank you for the info. I worked for drs for years and know medical terms so I sent the new doctor a message. I see all my doctors at the same clinic. If this doctor doesn’t get me in sooner.. I’m going to involve ALL my doctors and go to the top and complain. I can go to another group. Sorry for your diagnosis.

Did you ride a bike extensively or any type of repetitive exercise machine as the Elliptical?

I am in California and I am so desperate I have to wait two months to see a rheumatologist and I do have insurance

I really want to get off the steroids bc the effects is bad. I’m on Daphne’s n cellcept. Sometimes I just wanna give up . Never been in remission

Are you still taking steroids

Hey I hope your doing good! I see this video is from a year ago. Ive been going through some strange things and a lot of it seems like it could be auto immune related. A few weeks ago I went through what I think could have been a flare up. Totally exhausted, nauseous, chills, fingers and toes just aching so bad and cold fingers to the point of turning purple under my nails. I had actual ulcers around my tonsils for a day only which was really strange. After a few days I got my energy back but I then got some blisters on the palm of my hand and fingers. Then a week ago my left index finger tip down to the knuckle got super swollen and painful I could hardly bend it. It lasted a couple days and went away. Ive always been going tthrough strange things coming and going throughout the years but lately things seem to be happening more and more and worse. I see my dr next week but I dont know how to bring it all up to her. I've always felt like something is going on but then I feel fine and dont think about it for a while. Then it starts up again. Ive been going through severe misophonia too which is maybe happening from feeling so awful most days.

The Arava or leflunomide caused thinning and loss of hair. You’re absolutely correct about that.

Tysm for sharing😊

I've been dealing with ALL the lupus symptoms and getting increasingly worse over the last 14 years. I've had other diagnosis that doesn't seem to fit, and many times being told it's all in my head. I'm not going to give up but it's so hard to fight when your so sick you can't function.

Hey, I just started Rinvoq this week for RA. Do you mind me asking how quickly you started getting side effects? This is my first try on a medication that isn’t one of the basic DMARD’s… fingers crossed!

Thank you My health has been deteriorating for over 5 years now. After 3 hospital visits and a negative ANA test. Still in pain with all the symptoms for lupus.

I’m in the process of being diagnosed with SLE and my c3 and c4 test came back extremely extremely low , I haven’t seen my ANA and have been so anxious if it’s negative they’re going to try to say it’s something else . Which they are concerned it may be a muscle disease . This video was so so soooo helpful I feel heard and seen . Please keep making videos , you’re amazing hun thank you !!

Hello. A family member of mine has issues at night time but no doctor can figure it out, or... They dont care and make a guess. They dont even do tests. For the past 5 months, she goes to bed at 10pm. And 10 minutes later she starts shaking, says she is cold. Uses an electric blanket. Out of breath. Fast heart beat like 128. 02 level 88 - 91. Very weak. I check her temp a lot, and sometimes it 97. Or 98. But later a low fever. So i give Tylenol. This happens once ir twice a month. She wakes up ok. No shivers. No fever. It all starts at bed time. She does take a few meds late at night. Like forteo and a sleeping med, Clonazepam. Vitamin magnesium. I only see a few things online. Sepsis, or arthritis sepsis. Rheumatoid arthritis which she doesnt have, she has bad knees tho. She has ibs, and last year... pancolitis, was in the hospital for 4 days. High bp and then low bp. Anemia. Her bp is normally good. 112 over 75. I also say lupus as a possible culprit fir this random night thing. I dont think its sepsis because she isnt sick the next day. A strange thing tho. Her procalcitonin was elevated last year at hospital. Was put on zosyn. 3 days later, still in the hospital her procalcitonin spike agian. A 3. 00. She had 2 broken feet. And they said she got pneumonia. Was sent home with zpack and amoxicillin

I have started that too I’m scared 😱

Hi my husband has been diagnosed with auto immune disease n he has been losing weight past one year n he started having Alopecia from last 3 months all his antibodies were negative n his ANA is also negative couldn’t able to diagnose could you please suggest any tests

Please advocate for yourself! Please. Doctors aren’t always right and You’re not crazy.

I’m sorry you have to go through this. It’s such a shame. Why can’t this country get it together with health care!?

My eye doctor suggested I be checked for Sjogrens syndrome, and when I finally was, I was diagnosed with Lupus. One Rheumatologist was able to see me, OVER ONE YEAR from now. I have finally gotten in to see one the middle of this coming June….and over two hour drive from me. Seems to me that the Rheumatologist is a rare bird in THE SOUTH, and almost on the endangered species list. Don’t know what will happen, but I have always had immune issues, but worse since I became a Covid victim. Now my husband, who also experienced Covid and no preexisting immune issues, now has them…

I just did my first one. Is it normal for liquid to come out after I remove the needle??

Just read a great research paper about the fact the ANA changes From negative to positive over time. No one does this test every single day so we need to jump into right time to get a diagnosis or be "stably severe". I did ANA 1 in 3 laboratories 4 times during one month and the difference ? >1:3200 and negative xxddd this is so ridiculous

Whoa…yeah, I cannot believe they didn’t test it (saphnelo) with other drugs for interactions! That’s crazy, I mean at least test with the main popular ones or classes of drugs! Or the cancer possibility either! Thank you for sharing that, wow.

Subscribed! You are definitely helping me with your vids and thank you soooooo much for sharing your story. I was diagnosed in 2019 but STILL haven’t figured out/found what works for me yet, for so many reasons. But my drs have started talking to me about moving to a biologic and so I’m reading and watching as much info as I can. So far Benlysta seems to be something to try if I can. Lots of financial stuff to figure out later too ugh lol. But anyway, I just wanted to let you know you’re not talking into a void, you’ve helped me and alleviated some fears since I at least have an idea of what to expect. Question: does the auto injection Benlysta hurt you as much as many people say? I’m very needle phobic so it’s also a factor, and infusions might be the way to go for me even if it eats a whole day I guess, I’m that adverse lol.

I’m afraid to take fish oil because when you put in DHA or EPA in any of the apps that check ingredients it says it’s not safe for sd

I am a Canadian, from 1960s Alberta is a rich province and had good Universities with very smart Drs in the Medical and University systeem that I saw. However my Mother couldnt understand autoimmue diseases, but could understand kidney disease. I was first hospitalized with glomerularnephritis at the age of 9. I had open kidney biopsies at 12 years old which showed the same problems as Lupus Nephritis. I had a kidney transplant at 57 years of age. I was not diagnosed with Lupus and Mixed Connective Tissue Disease til. the age of 60 in the US, Washington state. Mostly becaus of a negative ANA.😂

I am currently ANA negative and highly dsDNA positive. Also SSA positive. Sed rate is high. Im in a lot of pain but in limbo

Thanks for sharing your experience, I'm glad you solved, for how long did you take the pills ? still ?

Thanks for a great video. Your first point, is spot on for me, especially as I've gotten back out in the dating world after my divorce. My autoimmune disorder has affected me physical appearance, it has changed my posture and such. So, unless the other person isn't very observant, you're going to notice it about me. With that said, I've gotten to the point where I'm open and up front about it early on. I mean, it's a major part of me that's not going away, so why not just get it out there in the open? I find it can help weed out those who don't deserve my time and energy.

Hi, how you got your hair back? Did you face hair loss while inflammation in body? Please explain

what age did you get it at? im 14 and i got it a few months ago and i was confused thinking its dry skin

I always have a positive ANA. But the last time I saw a rheumatologist he basically said call me when you get worse. My sister has been diagnosed with Parkinson’s but now we are really thinking it has been lupus all along. It is what it is. Doctors PRACTICE medicine. They keep practicing………

to be fair u should be open to further testing, how did u originally get diagnosed? I think im in the same boat

Any dietary restrictions/ modifications made?

Do you take the gummy version of vitamin D3?

Thank you so much Sharri for your update and for sharing your story. I have a negative ANA but have been under treatment for lupus since 2007...virtually all the symptoms throughout that time have manifested. I have a good rheumatologist, he is a blessing I feel so fortunate he's been in my corner. I was seriously mishandled initially though when I first developed symptoms. I was treated like I was doctor shopping for pain medications, it was very demoralizing. Sometimes we gotta kiss a lotta frogs as it were 🐸 I am my biggest enemy today ....because of the negative ANA sometimes I feel like a fraud, especially now I am debilitated enough I need to apply for disability which I am scarred to even begin because I am going to have to "prove" it. Sigh. Videos like yours where people share their story really help me feel less alone. So thank you. I wish you well on your wellness journey! 🤍 Emily

I am now 61. My journey started at 19. I had facial lesions that would not heal. It took going to many dermatologists, treatments and being told I was just being vain, to finally getting referred to Stanford. After core biopsies, they finally determined discoid lupus and put me on Plaquenil. Several years went by, and my new dermatologist took me off it and has treated them as they occurred with steroid injections. The road was long, rough and demeaning, at times.

They are wanting to give me saphenelo and I'm scared to death but struggling with lupus

I have seborrheic dermatitis on my face.. will this help?

Blessing

Omg that I’ve never experienced especially with lupus tired pain almost every where what I’ve experienced and more headaches

Been watching your videos to get the anxiety out and make sure im doing the injections right. this is going to be my third time gonna try the leg this time. Did 2 on the belly each side near around the belly button thank you for sharing your experience.

What caprylic acid dosage did you use?

Thank you for sharing your story. Im older but have been sick since i was a teen and have been diagnosed with severe Lupus and RA for 3 yrs now and we havent found a treatment that works yet. Dont you just love the "come back in 3 months..." We have lousy doctors where I live. I have to travel. The family doctor i had at the time insisted i didnt have lupus despite it running in my family. He actually sent me to the rheumatologist who diagnosed me to prove to me that i DID NOT have it lol. Obviously HE was wrong. The frustrating thing is that I had to get VERY sick so now its like trying to untangle a ball of yarn or perhaps a better example is being in one of those mirror mazes-if we do this treatment it could make that worse and we cant do that treatment because of this. I was particularly drawn to your story because i too started before my diagnosis just like you with the strange symptoms. Ive also had paralysis. I was curious though if you ever experienced a sensation of tremendous gravity? Kind of like extreme GForce pushing you down on a rollercoaster? I also have times that my family jokinly say that i briefy go to an alternative dimension. I just freeze in motion and i lose that time; just totally blank out. I dont drop like passing out. Its not falling asleep. I just am briefly not there. Well ive wrote too much as it is...praying for a miracle.

My b12 is always low. I am always tired. I get rashes and they constantly think it’s lupus. They test me and it is a negative Ana. They they test me for Sjogrens. I have been diagnosed with psoriasis then none of the meds work. Only prednisone will work enough in a high dose to lower the rash. Then I get tingling in my leg and burning. They now want me to go and get and emg done for neuropathy. I constantly have High eosinophil levels. There was blood in my urine, low vitamin d, I constantly feel like just crappy. I’m so sick of all of these tests and not knowing what is wrong here. I’m wondering what is going on. You start To feel a bit nuts to be honest. Sometimes I will feel off balance and I have so much anxiety for so long. I don’t know. Then the rheumatologist said oh you have rheumatoid arthritis because of the psoriasis. What the heck??? Oh and then I saw a hematologist because of inflammation. They tested me for cancers etc. all came Back thankfully ok. It’s non stop. Now they are saying emg and maybe a kidney scan.

This is promising! Having a horrrific flare for the last 6 months. What is your dosage

How long did it take to see results? weeks or months?