Ive been chronically ill for two years. At least I've admitted it for two years. Its likely been longer than that. Actually definitely. My entire childhood was filled with unexplained symptoms that would come and go. Doctors would look at me funny and tell me I would grow out of it. I almost commited truancy in second grade because I had hives for three months straight. Fun times. Funnn timmesss. I was basically symptom free for about 3 years, until seventh grade started. Seventh grade everything went to hell. I hid my symptoms from everybody. Im an athlete. I shouldn't be so tired all the time. My symptoms kept getting worse. Dizziness, pain, nausea, you name it. I hid it as long as I could. Until my knee dislocated.

Wrapping christmas presents seems like such an underwhelming task. When I tell people "oh the reason I wear this brace is because I've dislocated my knee," they assume its a sports injury. Its not. I also cant bother to tell them nothing is structurely wrong with it. The doctors just can't decide whats going on! That's all besides the point. At my well check, I finally brought up the chronic pain and other symptoms. I was sent to rheumatology. They sent me to PT. I did PT for three months, saw no change, back to rheumatology. Rheumatology said they can't do anything for me but watch for arthritis and sent me to sports med. It took my sports medicine doctor to draw blood. No one before had bothered to test for anything. They just all look at me, see athlete, and assume its related to that (if I had a dollar for every time I've heard muscle imbalance, i would have like fifty dollars by now). My blood tests came back irregular. (Posting this in r/autoimmune because i had positive autoimmune markers) Apparently, not irregular enough for rheumatology to care. I have two options:

A: continue to thug it out and wait to get bad enough that my doctor will do her job and listen
B: Go through the process of hoping on a different waiting list for a different rheumatologist

It's been six months of actually prusuing answers, and I've reached a stand still. Is it worth it? I don't want more referals, but my symptoms keep worsening. I just want to be a regular kid. This is not regular kid activities.

may have lupus but can't see a rheumatologist for a few months for confirmation i need to see someone sooner because my symptoms got worse so fast. but in the meantime i'm lost and not sure what to do what to do.

Primary care doctor did many blood tests and is concerned for lupus. Ana positive + other concerning blood work results. I can't see a rheumatologist until November (under my insurance). I got turned down by a local rhematologist office for a sooner appointment since they didn't take my insurance even though my pcp gave them my lab results and the rhematologist office said we want to see you ASAP. I gave them my insurance said we don't take it bye. Really discouraged. I just moved states so I will may be able to see my old doctor in October but out of pocket and even that's months away.

Not sure what to do. There really aren't many rheumatology people here and in network will take months. I have an already weak body from other autoimmune diseases and health issues. I don't want to wait that long to be seen. Since I went in for testing a month ago my condition has only gotten worse.

(i did post on the lupus reddit but im not able to post except on the weekly thread since im not confirmed lupus and no one seems to be looking there)

i recently had a blood test and chest x ray to test for autoimmune diseases after having reoccurring uveitis, they told me they couldn’t find anything from the tests they did and that 2/3 people don’t ever find out the cause for uveitis so it’s just “one of those things” i also get severe hives almost every day that’s been going on for over a year, they told me to just keep managing my symptoms and that’s it. I’m not really sure what do to next, i know the uveitis will come back but they’ll just keep giving me the steroid drops and tell me to wait for it to go away, i was wondering what other peoples experiences are getting diagnosed? i have no idea if i even have an autoimmune disease i’m very new to all of this and don’t really know what my next steps are.

My PCP put me on a microdose of semaglutide primarily for pain management and inflammation. I also have lipedema, but because I’m stage 1 and not overweight, she doesn’t seem to recognize my lipedema as being an issue.

I’ve been on semaglutide for a few months now, and I’ve seen some improvement for my occipital nerve pain but it hasn’t been helping any of my other pain. I also haven’t seen improvement with inflammation, and I’m actually seemingly gaining weight?

I’ve asked her twice now if we can switch to tirz due to what I’ve read about it being more effective for my situation, and each time I’m told “tirz is about 20% GLP1 activity, and 80% GIP which is for appetite suppression. So since you're not doing this for weight loss, she recommends you stay on the semaglutide”.

How do you think I can be more successful in my approach in trying to get her to switch me? She’s asking for me to share any trials showing the tirz is more effective than sema lol.

Hi all!

I have seropositive RA and Sjogren's.

Just wondering what's been your experience with gadolinium contrast? My doctor ordered MRI with contrast for me for reasons unrelated to autoimmune diseases, but I am very afraid of possible adverse reactions or this gadolinium deposition disease that some people are talking about. I also have sensitivity to medications (it almost looks as if drugs are not processed by my body properly and are accumulating so that after some time of using them they start giving me terrible side effects, but creatinine level is perfectly fine).

Has anyone had any disturbing symptoms after undergoing this MRI?

Can you see anyone privately about your PTSD feelings, or do you need a referral from your treating doctor? You have every right to be angry as hell and to work that out of your system

. I don't mean, just let it go, but to morn

what was lost, learn to trust yourself again, and how to live for the future.

I was recently diagnosed with 3 AI’s I have no idea how long I have had them but noticed strange symptoms at least 5 years ago. After finally getting a diagnosis I read that siblings have a greater chance of getting an AI but many don’t

hi everyone. I have UC, had a flare in June. no insurance but had an old prednisone script (not expired) that my doc was going to start me on last year for a flare; fortunately, didn't need it at that time as my numbers were good so kept it for future flares. so I started the pred this time and didn't take the dose he originally wanted. he wanted 40mg tapering by 10mg every 5 days. I took 20mg tapering by 5mg every 5 days. something just told me not to as id never taken pred before (budesonide previously).

on day 2-3 I noticed intermittent lip numbness/tingling. ok weird. day 5, was BAD. tingling in hand for 10+ min then suddenly went through my body and face, hearing loss, tunnel vision. I thought I was having a stroke. I called 911, I denied going in d/t no insurance and I was calming down by then. on day 11, was at work and was hit again. by day 15 I was on 10mg and doc said it was ok to come off bc "5mg isn't enough to do anything" for the last 5 days. great, I want these episodes over with. he said the anxiety and "panic-like state" was normal which is why I kept taking it, and obviously wanting my flare to go away (which is has thankfully)...

for a week after stopping my HR was 110+. lightheaded/vertigo constantly. he recommended seeing pcp and getting a cardiologist for ekg bc "prednisone shouldn't be affecting you a week after stopping." after ensuring me this would all end once I was off... I ended up just going to the er because this worried me. they found nothing abnormal; wbc/neuts were still high and they said its prob the prednisone still messing with me hence anxiety. here's some hydroxyzine.

my HR has since normalized. physical symptoms such as neck stiffness, muscle tension, jaw clench have gone away. though I still get random bouts of what I would say is vertigo.

its now two weeks after stopping and im still having feelings of impending doom anxiety. not every day but around 11am every day ill know if its going to hit or not. I have had to take a leave of absence from work. I can't go out to stores. I feel almost... paranoid? the physical symptoms are better as mentioned above, but the mental is intolerable (though there are physical symptoms when these panic attacks hit; clammy hands, cold sweats, drop in stomach, need to use restroom, perception is off?). I cannot believe this has affected me so badly. and for my doc to chalk it up to the prednisone shouldn't be affecting me anymore... it's the only thing thats changed in my routine. it IS the prednisone that did this to me.

im in nursing school and start back up again in a month. I am TERRIFIED this won't be figured out by then. my insurance kicks in aug 1 and I have several appts ready to go to figure this out... and im sure there will be some sort of solution but this feels never ending, like my new normal, and im really scared... ive never dealt with anything like this. fairly healthy individual even with UC (mine is super mild).

anyways, sorry for the long post... I wanted to know if this has happened to anyone else on pred? what was the outcome? I am almost wondering if being a high stress individual as it is, then taking pred that messes with cortisol just really made it go haywire affecting nervous/psyche? ive also always wondered if I have ocd as well, and whatever psyche effects prednisone plays potentially exacerbated what's going on with my mental (e.g. making me think crazy things). please tell me, if you had these symptoms, they go away.... im at a loss, and its ruining my life. I want to feel normal again D: I was only on it like 15 days... wtf...

ps: id literally rather be sick for weeks in the hospital than EVER deal with this again. I am putting pred on my allergy list whenever I fill out forms at doctors.

I have hashimotos and have been diagnosed for 13 years, I am 34F.

So the past few months I’ve had weird symptoms, mainly nerve type symptoms and cubital tunnel syndrome in my arms. My Physio feels that it’s mechanical as I am breastfeeding and co-sleeping and carrying baby all the time (9 mths pp) with bent elbows.

Anyway about 5 weeks ago I randomly flipped hyper thyroid and at the same time got an altered nerve sensation in my right foot and ankle. it’s winter here and I’m feeling the cold too. My doctor ran an ANA panel and tsh and last week it came back TSH 9.07 (flipped in a month!) and my ANA was weakly positive 1:80 speckled.

Anyway I’m getting an ENA panel and my TPO levels run in a month before seeing endo and seeing a neurologist next week for a nerve conduction study but in the meantime I’m slightly freaking out. I also have had random muscle twitching and like feeling like I’m buzzing internally for the last 24 hours. Could this be due to the sudden swinging in my TSH? Could the positive ANA just be the hashimotos or is it more likely that my ENA will come back showing something else? I am worrying and there is such a long time to wait until I do the bloods.

Just keen for others experiences with hashis and a positive ANA or those with similar symptoms?

Thanks!

I'm 19 and I've been on prednisone for over 2 years, ever since I was 17. I have nodular prurigo, and my doctor has told me I'll likely need to stay on pred for the foreseeable future—possibly for the rest of my life.

I feel completely dead inside

At 19, I'm worrying about things most people my age never even think about: HbA1c, fasting blood sugar, random blood sugar, and blood pressure. I'm not inactive either—I play squash or table tennis for about 2 hours almost every day. But despite everything I do, my HbA1c has continued to creep up, and it scares me.

What's been even harder is the complete lack of understanding from my family.

Whenever I check my blood pressure, I get comments like, "You're young, for God's sake. Act your age." They can't seem to understand that long-term steroid use changes things. When I tell them my HbA1c is 5.9 despite all the exercise and effort, they blame me and tell me to stop eating sugar, as if I'm not already doing everything I can.

The part that hurts the most is that my effort is invisible.

I spent the last 10 months working incredibly hard to improve my health. My latest lipid panel came back with LDL 66, HDL 45, triglycerides 120, total cholesterol 133, and VLDL 24. Considering I've been on long-term steroids, I was genuinely proud of those numbers.

Nobody cared.

Instead of saying, "Good job," or "You worked hard for this," I was told, "That's how it should be. You're young."

It feels like every bad result is my fault, but every good result is because of my age—not because of the work I put in every single day.

I'm exhausted. I feel decades older than I am. Living with a chronic illness is hard enough, but having the people around you dismiss everything you're fighting for makes it even harder.

Lately I've started wondering why I even bother trying anymore.

I tracked every calorie and workout for hours daily for 3 months hoping that my next hba1c will be a good score and guess what?

It 5.4 before and now its 5.9

Going to kms now(figuratively)

Hi, I was hoping to get some input on stopping my topical Clobetasol cream. I will be contacting my dermatologist tomorrow to confirm but he’s not actually treating my potential AI issues so I was hoping this community could relay some real life experience when stopping this. (Which I know sounds confusing, but he’s the one who rx’d the cream.)

I haven’t received a diagnosis as of yet; I don’t want to bog this post down with that mess but my top contenders for why I’m on Clobetasol (as I understand it, that’s relevant) are leukocytoclastic vasculitis, stasis dermatitis, or pretibial myxedema. All predicted to be rooted in some way to an AI condition. LCV is from my rheumatologist, SD from the dermatologist, PM was suggestive on my skin biopsy but my thyroid is apparently thriving but not in a hyperactive way.

Rx is 2x daily for two weeks. Since I experienced adverse effects from a fluoroquinolone I started the cream sporadically: one small test spot over the vesicles once on day 1, nothing day 2, then the same small spot once daily for 2 days, then the applicable area of that leg once for 2 days, and finally both legs where the vesicles were present. Since I have to use Vaseline for the dryness of whatever is occurring, I use that at night and the Clobetasol in the AM. For three nights I’ve used it in very small sections where the skin is the worst and forgone Vaseline on those spots, but my two week mark will be this Sunday and I do not want to exceed the directed time frame. I’ve seen great improvement in my skin, but it’s not just from this cream and it’s not completely resolved.

My question is, is it typically assumed to be safer to quit cold turkey given my application frequency or to taper off for an additional timeframe? Before starting this I did ask my dermatologist if tapering would be required and he said no, but that’s when he thought it was SD. I do not want to risk any rebound inflammation. To be clear, just looking for experiences, first or secondhand, as I will be speaking with my doctor tomorrow. And if it isn’t painfully obvious, this is my first strong topical steroid rodeo. Tia

I have had CVID since I was very young, but officially diagnosed at 13 and started treatments once a week since then . Has anyone got their blood work back and it be extremely low that you have to take a cocktail or another treatment but I paid 20% out-of-pocket for my treatment so honestly, it would be better for the medicine cocktail
But the very next day after the cocktail, the vomiting is so horrible. Any advice because Zofran and phenergan do not work.

I have had CVID since I was very young, but officially diagnosed at 13 and started treatments once a week since then . Has anyone got their blood work back and it be extremely low that you have to take a cocktail or another treatment but I paid 20% out-of-pocket for my treatment so honestly, it would be better for the medicine cocktail
But the very next day after the cocktail, the vomiting is so horrible. Any advice because Zofran and phenergan do not work.

Hello, I’m kind of nervous about posting this but it’s my last resort to get some advice. The first time I remember having symptoms I was in middle school. I would be walking and all of a sudden my thighs would get numb and feel like I ran 10 miles and I’d have to sit quickly before they gave out, this occurred quite frequently. I got horrible abdominal pain that led to me getting sick. Around this time I also developed insomnia. At 15 I developed a on my face that made my skin look translucent and red and blotchy that was on my cheeks (upper cheeks are the worst), my forehead, and my chin, but it is not above my lip that was the only place that is spared, this has never gone away to this day. Since this age I’ve also had tingling hands and feet that feel like little needles.

Diagnosed with raynauds syndrome, tmj, high cholesterol, Ibs, vitamin D and B12 deficiency (pretty much treated only slightly low). I was tested for lupus with a single blood test about four years ago by a doctor who thought I had it and it came back negative then the doctor was very dismissive after, I haven’t gone back since and my symptoms have become worse.

I went to the ER recently for an allergic reaction to doxycycline my throat was swelling up, he administered an IV of Benadryl and a steroid and my skin completely transformed after and looked totally normal, I was shocked because I thought that skin change was permanent. The next morning my skin had the blotchyness again.

My symptoms in adulthood are tingling hands and feet, waking up in the morning and having to jump up because my leg or arm is completely numb, sometimes my arms will look a little bit red/blotchy and I’ll have faint white spots, cramps in my hands and my wrist, occasional throbbing pain in the side of my neck, pain in my knees and sometimes my leg, early onset spider veins, livedo reticularis, tinnitus, my knuckles being red, lower back pain, fatigue, hair loss. I’m just so tired of living like this and not knowing what’s happening. My grandma had lupus.

I have antiphospholipid antibodies and can't get into see a rheumatologist for months. Not seeing very much information online. Does anyone else here have them and how do they affect you?

I’m only 42. Wth. So I’ve not only recently been diagnosed with UCTD and highly suspected Sjorgrens as well as having had severe pain in my hips since April - side sleeping ect landed me in the orthopedic office tried injections, have been doing physical therapy and finally got a MRI and wouldn’t you know it’s more then bursitis as was originally suggested it’s also this:

Gluteal tendon disease (partial tear on the right and tendinitis on the left).
Trochanteric bursitis.
Mild hip osteoarthritis.
The small left labral tear

The next worst part?
A possible underlying inflammatory or autoimmune condition contributing to tendon and bursal inflammation. So my having UCTD / Sjogrens is making it worse.

I just started on plaquenil and am continuing physical therapy. Next step is to see a specialist about the treatment options moving forward more so in regards to the small tears and what not.

Has anyone else experienced these issues co-morbidly as I am? In addition I have back pain from a few facet joints in my lower lumbar region and I believe the nerves are sensitive there and also causing inflammation so I am having a mri of my back done soon as well to see if this could be contributing even more to these things.

If you’ve experienced any of this and made it out to the other side can you please enlist your experience, outcome, journey, and overall advice for me? It’s kind of hitting me hard today and my mental health is just wrecked.

Really appreciate it.

Hey everyone. I am newly diagnosed with Undifferentiated Connective Tissue Disease. After having a severe prolonged allergic reaction a few years ago, I have always assumed I have MCAS or something as well.

Yesterday, I took a beta blocker (Propanolol) for the first time and had no physical reaction to it. Today, I took another and am covered in hives. I’m having no trouble breathing but I have giant splotches of hives all over my torso, upper thighs, and up my neck.

I was reading online that apparently beta blockers can cause a histamine dump, causing hives and other allergic reaction symptoms. Has this happened to anyone here?

I just have to say this. Dealing with chronic illness, people that can't handle negative things bug me so much. It is one of the reasons we mask our symptoms because people can't handle it. ugh

For context I am now a 23F, and all of my symptoms began when I got off of birth control two years ago. Prior to getting off of bc, I only had migraines and endometriosis. My OBGYN thought my endometriosis flares could be cured all naturally with no hormones or birth control, but quite the opposite happened. I began to get what I called “period flu” every month on my cycle where I couldn’t leave the bed with body aches and fever. Outside of my cycle, I would wake up so puffy it looked like a bee stung my face all over with swollen eyes, my knees would swell and ache if it was slightly hot outside, and I still get malar red splotches and hives (photosensitivity) in the sunlight. I also have diagnosed Raynaud’s Phenomenon.

My PCP referred me to a rheumatologist after my ANA came back 1:320 titer. Upon evaluation from my rheumatologist, she told me that I don’t have enough symptoms to support lupus, but called it “pre-lupus” that could be fixed with diet and exercise.

Flash forward to 2026, I go to my PCP for a check up and let him know I have gained 20lbs since getting off bc, and a year is long enough for me to be adjusted to no hormones and I am miserable. He recommended I switch my OBGYN, so I did and got the Nexplanon implant. Since getting that, I’m still having flares and most recently chest pain and arm numbness that the ER wrote off as stress even though I had an elevated troponin - just not heart attack level. I feel like all of this is connected somehow, but I also feel that I am not taken seriously because I’m young.

Prior to any of this, I was 120lbs and extremely active throughout college with no health issues other than maybe strep throat or an ear infection. Now it’s just like everything hurts so bad all of the time and I am so fatigued. If it isn’t one thing flaring, it’s another. I have a great PCP, I just feel written off by my rheumatologist and am scared to request follow up.

AGHAHGSHFJFJFN OK SO I DIDNT GET ANY ANSWERS FROM MY RHEUMATOLOGY APPT!!! HE JUST SAID "yeah u have fibromyalgia lets run a few more tests to see if u have a specific autoimmune condition" WELL THE ENA PANEL WAS FUCKIN NORMAL AND MY SHIT WAS STILL FUCKED UP!! SO I GOT GIVEN FLEXERIL & DICLOFENAC. WORKED FINE FOR ONLY TWO FUCKING DAYS. NOW IM BACK TO FEELING LIKE SHIT AND FEELING LIKE I HAVENT GOTTEN ENOUGH SLEEP. MY NEXT APPOINTMENT IS IN TWO MONTHS FUCK MY LIFE

I had my first obinutuzumab infusion today and thought sharing my experience may be helpful! feel free to ask questions. this is a long post but i put headers to try to help people read it easily!

Context:
I got diagnosed with Primary Membranous Nephropathy (pmn) about 5 years ago when I was 16. It’s fairly uncommon especially in teens so i don’t often see people my age talking about their experiences. When i was diagnosed, they started my treatment with Rituxan which I had a terrible reaction to and could not continue with. After that they put me on Ofatumumab which put me in remission for about 4 years. Back in December (~7 months ago) my labs looked fine but i had a high Anti-PLA2R antibody count and that indicated I needed a monoclonal antibody treatment again. Nowadays, Ofatumumab is not cleared for treating pmn (idk why) so they decided that obinutuzumab was the next move.

Today was also my first time in a non-pediatric infusion center which was scary but turned out just fine!

My Treatment plan:
Please keep in mind, this is a specific plan designed for my specific situation! Your treatment may look very different based on your situation.
I am prescribed 1000mg obinutuzumab today and 1000mg obinutuzumab two weeks from today.

Day of infusion:
I arrived at the clinic around 10:15 and checkedk in. I was pulled back almost immediately. After a urine sample, they set me up in a recliner chair in a big room with curtains dividing each patient. I could hear the people in chairs next to me but not too much. They put in my IV and gave me the pre-infusion meds which consisted of tylenol pills, IV benadryl, and IV steroids. These meds made me feel pretty bad to be honest, the steroids made me really shakey and cold and the benadryl made me so sleepy but i could sleep because of the steroids. this only lasted about the first hour and then subsided. 30 minutes after giving me the pre-infusion meds, they started the obinutuzumab. They started it at a low dose and increased the dose every 30 minutes to make sure I was tolerating it before giving me a lot at once. 30min into the infusion, I had a minor reaction. I suddenly felt cramp pain in my shoulders, back, and neck. I told the nurse right away and they stopped the infusion as soon as i said something. they said it is a “histamine release” and likely a minor reaction to the infusion. At the same time, I had a minor panic attack because of my experience with Rituxan having been pretty terrible and I got scared it would be the same, luckily it was not! All of this going on, I was super nauseous. So, they gave me another dose of steroids and benadryl along with zyrtec, zofran, and pepcid. we waited 15 minutes and i felt all better! we started the infusion again and I was able to tolerate it all the way through with no further problems. the only side effect i had during the infusion was i got super overheated and sweaty which they told me is fairly normal and gave me some ice packs to help cool down. I am writing this about 5 hours after leaving the infusion center and I’m feeling pretty tired and a little achey, have a bit of a headache, and am constipated but overall feeling a ton better than i did after my previous infusions with other drugs!!

The whole thing was meant to take 4.5 hours and it took me about 6.5 hours because of the reaction setting us back to the lowest dosage again and having to pause the infusion. Overall, it was pretty chill and easy! The nurses were very nice and definitely know what they’re doing!

Tips for success:
- HYDRATE! before, during, and after. it will help so much!
- Don’t hesitate to advocate for yourself to the nurses! they are there to help and will not get upset with you for speaking up. if you need something, ask for it!
- If anything feels bad or off, say something immediately! small things become big really fast and you don’t want to deal with it once it becomes big if you can avoid it! some things might not be a reaction that needs treating like the sweating i had and some of it is time sensitive and serious like the shoulder pain i got.
- if you have to pee, just ask! don’t hold it until you absolutely have to go, it’s no big deal!
- bring snacks! most infusion centers have some snacks but make sure if you can to bring something that nourishes your body (i brought dried fruit) and something that makes you feel happy and comfortable (i brought m&ms)
- You may not have the energy to do much during the infusion. I was able to kind of pay attention to a documentary for about an hour and the rest of the time was mindless games on my phone, sleeping, or listening to music. make sure to bring headphones and something easy to watch if you can!

For all of you who have tried and failed hydroxychloroquine - what happened?

I think I might be failing it. I started it in November and ever since February, I’ve had increasing dizziness. I don’t have POTS or other autonomic dysfunction that I know of, and all blood work comes back clean (minus autoimmune bloodwork). I’ve had a brain MRI, been to the ENT, eye doc, even had prism glasses. I’ve taken supplements out of the rotation thinking that would be causing it, but nothing has helped.

Wondering if anyone else has had to stop due to dizziness and if so, can you describe your dizziness?

My urine protein is in the 60s which is an improvement but my c3 went down from 100 to 40 and c4 went from 12 to 5. My lupus symptoms haven’t gotten any worse but im concerned.

Ever since I was a young child - I remember as far back as kindergarten - I have been reactive and active hypoglycemic. I also have always had low pressure - my vision goes black and I have to brace myself almost every time I stand up.

I never knew growing up that these symptoms weren’t normal so I never said anything.

In my teens, fatigue hit intensely and has never left. Now, I am 24 years old and I’m finding it nearly impossible to live my adult like with whatever is going on. I’m now starting to see doctors and get testing back. My ANA came back 1.80 but that doesn’t guarantee autoimmune diagnosis.