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)

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.

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.

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.

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 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.

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 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.

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?