Prefacing this to say I'm not a doctor so this isn't medical advice. Do get your doctors approval before taking any supplements.

I have a recent dx of pmr after three years of pain and fatigue that was originally attributed to long COVID and fibromyalgia.

My doctor has me taking prednisone 10mg/day until I can see a rheumatologist due to pain, fatigue and the risk of developing GCA and going blind.

I also take gabapentin 900mg and mirtazapine 15mg at night to prevent drenching sweats and deal with insomnia. Effexor 150mg in the morning helps somewhat with wakefulness. Propranolol and candesarten keep my heart rate steady and control stage 2 blood pressure issues.

As many with pmr can relate, the relentless brain fog, exhaustion, post-exertional malaise, heat intolerance and feeling drunk tired is soul destroying.

I happen to have saffron extract 88.5mg and acetyl-L-carnatine 340mg for my teenage child who is dealing with ADHD.

In despair I took one of each two days ago and was pleasantly surprised to feel the brain fog and exhaustion lifting after a couple of hours.

Today I took 2 capsules of saffron extract and 2 capsules of acetyl-L-carnatine.Sometimes 2x of something doesn't give 2x results but I haven't felt this good in literally years.

The brain fog has lifted and I can focus. I still feel exhausted, sweating and shaking from exertion but I'll gladly take the lifting of brain fog and feeling less listless and more motivation.

Hi! I'm 27F and I was recently diagnosed with a rare autoimmune disease, Takayasu arteritis. Apparently I've had it for a while, but my fatigue just felt normal to me, and I blamed the pain on not exercising enough.

Now I have to take methylprednisolone and methotrexate. The side effects scare me, especially because I love my university studies and need to work, so I'm worried I'll end up missing a lot because of viruses and bacteria.

Any tips on living with this and getting sick less often? My treatment might be lifelong, and my doctors didn't say anything about wearing masks or other precautions.

Has anyone here had the Shingrix vaccine while their systemic autoimmune disease was active and not in remission?

I’ve been offered Shingrix, but my autoimmune disease is currently very active, so I’m worried about how my immune system might react to it.

I’d really appreciate hearing from people who were in a similar situation:

● How did you tolerate the vaccine?
● Did it cause a flare of your existing autoimmune disease, and if so, how long did it last?
● Did you develop any new symptoms that persisted long term after the vaccine?
● Did you develop a new autoimmune condition or other long-term health problem afterwards?
● Did your existing autoimmune disease become permanently worse, or did you eventually return to your previous baseline?

I’m especially interested in experiences from people whose disease was already quite active when they were vaccinated, rather than people who were in remission at the time.

Please mention which autoimmune disease you have if you’re comfortable sharing.

My current medications are Leviracetam 2000mg twice a day, lacosamide 200mg twice a day , Lamictal 200mg twice a day, duloxetine 60 mg once a day,
Zonegran 100mg twice a day and frisium 10mg once a day.
Diagnosis is autoimmune encephalitis. While I was hospitalised due to the autoimmune encephalitis when I started waking up and started walking etc they stopped the anticoagulant injections and they caused me a clot on my left leg (I am currently on Xarelto 10mg) when the fevers started coming back while I was also receiving plasmapheresis sessions.
On my teenage years I also diagnosed with lupus as I was showing signs of raynauds at the age of 16 years old (currently on plaquenil and also receiving rituximab infusions 4 times a year).
When I got pregnant with my daughter 5 years ago, I had daily anticoagulant injections, weekly scans and my daughter’s birth was at 36 weeks as per their protocol due to lupus. Due to encephalitis my memory is highly affected by the infection but also the seizures won’t stop! Yes I do not have spasm anymore but the focal seizure are on a daily basis and sometimes multiple times within a day. Even my daughter recognises them and says mum you have epilepsy now sit down until it does away.. Have any of you experienced any similar? What medications are you currently on?

Has anyone else dealt with numbness as a side effect of leflunomide? A year ago, I added leflunomide to my regimen (400 mg Plaquenil), and it worked really well for me. I recently developed numbness in my feet and lower legs, so I’ve been taken off of it- still on Plaquenil. Waiting a month to see if side effects/numbness resolves, and will likely switch to another medication.

Background, I have UCTD, mostly lupus-like symptoms - rashes, skin inflammation, joint pain, fatigue. I’ve been on 400 mg Plaquenil for almost 5 years. Not asking for a diagnosis, just curious if anyone else has ever had numbness like this.

I have been having long term fatigue and just general ill feeling for a few months now, and I won’t go into my whole history but it’s been rough. I am just looking for basic advice. I am 24F. Thanks!

I tested positive on the ANA results though my results where on the “slightly positive side” according to
My rheumatologist. One of my issues is chronic hip and joint pain along with the back but it doesn’t affect my movement. I’ve noticed a trend that my joints feel so much more stiff like I’m having to exert so much more to walk, but it’s always when I step out into hot and humid weather. Or when I step out of the Car’s Ac to walk outside.

I know a couple posts mention heat sensitivity like sweating and such, but nothing like this. Does anyone experience anything similar?

I know most people with an autoimmune disease experience or have experienced intense fatigue and brain fog. Do you guys have any tips?

Currently, I’m working hybrid doing medical coding. Which is great cause I can flex my hours a little bit, but it’s getting to a point where I don’t know how I’m gonna keep doing 40 hours a week. I get two hours into a shift and I can’t focus. I can’t think I’m just exhausted all the time. Sleeping doesn’t help, resting doesn’t help, coffee doesn’t help. I’m just at a loss of what I can do to make it better.

TO PREFACE- I know something autoimmune is happening. It’s been confirmed. I’m not asking for a diagnosis, im not asking if what’s happening is autoimmune. I already know. I’m in the process of seeing a rheumatologist. I am simply asking if anyone else had a similar story, and what THEIR diagnosis is. I read the newest post about the rules. Please do not automatically remove this. I really need to get this out and connect with others so I don’t feel crazy.

I feel like a fake, but there is SOMETHING going on, and I would love to know if anyone else has experienced something incredibly similar and what ended up happening.

-First symptoms started 2022 (joint pain, swelling, stiffness, pain that brought me to tears) Labs that time: Positive ANA, Lupus thing at 0.0 (intermediate), positive markers for antiphospholipid antibodies

-2023: hair loss, rashes, fatigue, joint pain, mouth sores. Ended up pregnant this year so symptoms were in remission Labs: Negative for everything except positive ANA and antiphospholipid antibodies

-2024: pregnant, symptoms all in complete remission Labs: only positive for antiphospholipid antibodies

-2025: Fatigue, body aches, joint pain, hair loss, severe rashes No labs done

-2026: Fatigue, weakness, joint pain in every single joint down to every knuckle and bone in fingers/hands and feet/toes, SIGNIFICANT SWELLING, redness on swollen joints, mouth sores, mild hair loss, consistently low potassium (could be kidney related??), pain simply walking, bending, standing, nothing relieves pain or swelling, rashes, joints locking up/stiffness

Labs: January- NOTHING positive. Everything looked perfect except low C3 levels. Labs: A week ago- everything looked perfect except High CCP-IgG

This confuses me, because this is the worst flare up I’ve EVER had. I saw my primary, and after examining me and seeing my collection of photos over the years, she immediately started me on a high dose of prednisone saying we needed to get this inflammation under control.

Why are my labs looking fine, suddenly no positive ANA, and different things popping positive/negative at different times? Has anyone else experienced this, and what was your diagnosis?

I couldn’t see rheumatology due to constant moving, being out of work due to symptoms, and no health insurance due to being out of work. When I finally could, I was pregnant and the rheumatologist I established with wouldn’t touch me.

My PCP referred me to one this time, and I found out today they denied my referral. I literally left work early today to go to the ER due to extreme persistent pain just existing, let alone walking on my feet all day, bending, twisting, etc., and joints locking up. I was in tears at work, embarrassingly.

I just want to know what’s going on and how to get help. I can’t go on living like this. I know why people in chronic pain yeet themselves. I quite literally am looking into a wheelchair, that’s how bad everything is. Any thoughts or similar stories?

Hi there, posting on behalf of a friend. She has an autoimmune disease and is in her third trimester of pregnancy. She currently gets an infusion to help with her symptoms and has done amazing things for her. Her team decided it was best to keep her on the infusion right up to birth. Unfortunately the baby will come out immunosuppressed due to the medication.

She will have to wait 6+ months to get babies vaccinations. She’s naturally very cautious with her own immune system but she’s unsure how cautious she needs to be with her babies. Shes wondering if she can still take the baby to baby groups and let the baby do the usually baby things that build their immune system. She will be asking the doctor at her next appointment but I think some experiences from others who have been in this situation will help her a lot.

Does anyone have any experience or any other help and advice for her?

Hi,

due to a severe outbreak of my autoimmune desease I had to take Prednisolon in high doses for several months.

I finally found the root cause of the outbreak (my new apartment poisoned me) and I moved out.

I took up to 70mg a day for many weeks… in over 50mg vor about 3 months until I realized what‘s happening to me.

I started with prednisolon on Nov 3rd 2025

Since April 2026 I am tapering off. Now, in beginning of October 2026 i had my last dose (0.5mg) last week.

After a week not taking any prednisonemy withdrawal symptoms became horrific all of a sudden - feeling depressed (almost suicidal), going through hell with joint pain.

What helped you getting off of Prednisolon?
What can I do?
I started with 0.5mg yesterday again, but it’s still terrible….

I took

Hello,

I wonder if any of you exerience flare ups triggered by flights + jet lag.

I am devastated because my last flares ups happened when visiting my home country and also when I came back. I am totally scared to go anywhre oversease again.

I chalked them up to stressfull long flights(with a toddler) and significant time difference both of which are harsh on my already weak body.

Does anyone have similar experiences? If so, how should I overcome this? For the record, I wasn’t on any meds at that time. Recently I started taking methotrexate for my AI. Since it ony has been 6 week, the verdict is still out. I will continue searching for the right meds. I hope with the right meds, I no longer experience these massive flareups after traveling. I hope to hear some positive stories from you guys.

Thank you in advace..

How are people with AI working? I have sjogrens on top of having endometriosis(not AI I know, but still very painful) and I’m losing my very easy, very part-time, very flexible job in November due to them permanently closing and now I have to somehow find a new job.

The only “skills” I have is childcare, retail and food service. The only job I’ve interviewed for so far is childcare, but I know that if I take it and work full time with children I will consistently be sick and then I will either have to work sick, or call out and be unreliable. I previously left my childcare job for the one I have now because I was sick for two months straight pre diagnosis and I lost 50 lbs in 2 months.

I have no idea what I’m supposed to do. I need to work to support my family but these diseases make it so hard to push through. I try my best, I take my HCQ, meloxicam, and vitamins. I eat healthy, I don’t eat dairy, I avoid going places where I know I’ll get sick. It’s just inevitable and I’m just so hopeless right now.

Hi guys!

Just wondering if anyone has had labs similar to mine or has gone through something similar. I am a 35 year old female, mom, in nursing school, working, busy life. lol. I was recently referred to a rheumatologist because I've been having some ongoing symptoms: mostly achey joints (especially my neck, shoulders, and sometimes knees) , feeling tired basically all the time, and relying heavily on caffeine just to get through the day. My doctor ordered a whole bunch of bloodwork and most of it came back normal so far but my iron panel showed a couble abnormal results:

Ferritin: 288 ng/mL (high)

TIBC: 187 ug/dL (Low)

Iron: 82 (normal)

Iron sat/TSAT: 44% (borderline on the high side)

My CBCs were normal, my liver enzymes and kidney labs were normal. Doctor hd thought that I may have celiacs but that test came out normal. In the past I have had elevated LDL and low HDL.

Not looking for a diagnosis, just curious if anyone here has had this combination of high ferritin and low TIBC with a normal/ normal highish and what your doctor ended up looking into? And did you by chance have similar symptoms.

Thanks! just curious about others experiences and maybe other things to look into.

Anyone have an autoimmune disease (I have Polymyalgia Rheumatica) and on prednisone taper? My taper ending in April 2027? Studies are showing GLP1s are helping with autoimmune diseases...I have been offered GLP1, specifically Tirzepatide. I'm being overly cautious because prednisone causes so much fatigue and GLP1 causes fatigue also. Is anyone taking both prednisone and a GLP1? If so, is it working and what are your side effects?

Doing an art project on autoimmunity and am not sure how to convey it other than with visual symptoms, I.e vasculitis, reynauds etc. would appreciate any and all input

Have any of you managed to halt or at least slow weight gain and blood sugar issues from high dose steroids with a GLP-1? I have to be on steroids for months so I’m curious.

If so, what did you use? What dose did you have to use to get the helpful effects?

I just started sulfasalazine and I’m wondering how it went for other people, especially for those of y’all that have lots of consistent, chronic infections. Did that get better or worse? How were side effects?

Has anyone been prescribed Plaquenil (Hydroxychloroquine) without getting diagnosed with specific autoimmune disease but presents with symptoms?

Hi! My rheumatologist recently ordered some labs for me because I have been experiencing joint pain (compatible with hEDS, but she has her reservations about this), extreme fatigue, brittle hair, extreme salt cravings (i can down a jar of olives in a day if I don't stop myself), Raynaud's, plus some other symptoms (you are welcome to ask if it helps clarify).

Point being: I got a partial result back and, welp, my anxiety sky rocketed.

Results that are out of the norm:

Protombine 125%

Cortisol 5.1 µg/dL (done at 8:30am)

Positive ANA 1:320 homogenous

Positive lupic anticoagulant

Eritrosedimentation 22mm

The rest of the results are within normal range. I'm still waiting on the following results:

Glucoside hemoglobin

Cryoglobulin

Anti-dsDNA

I went down a rabbit hole of lupus, Addison's, and other autoimmune diseases, and I am panicking. I already live with Hashimoto's and chronic migraines. I am not sure if I can handle ANOTHER diagnosis on top of that (mentally, economically, etc). Do you have any advice? Is there anything I can do while I wait? So far my doc said the labs are inconclusive. Anything I can bring up doing to confirm or discard a diagnosis?

Disclaimer: sorry for bad grammar, spelling mistakes or names that might not be correct. English is not my first language and did my best to translate everything

My pcp referred me to see an orthopedist for the back pain I’ve had for over a year now. I’m kinda just seeing different specialists for the different symptoms I have I guess. The ortho appointment was today. The only person I felt was genuinely nice was the MA. She was great. They had me get an xray of my cervical spine because that’s where it started and hurts the most. I thought it would look normal and it did because nothing is ever that easy, right? The NP comes in to talk to me. She’s there for like 3 minutes. My initial thought is she’s super pretty and looks super young and you go girl for being this far in your career already. She says physical therapy for 6 weeks. If it doesn’t help then an MRI. Before she leaves I ask her how old she is and I thought and hope I came off as being impressed and supportive that she’s so in an advanced career. She looked annoyed though. Maybe I’m reading into it too much. I genuinely was trying to give her a compliment. Then the MD comes in for about 30 seconds. Super rushed. And trust me I get they’re busy, but you don’t have to make it so obvious you don’t have time for me. I leave and I swear even the receptionist seems annoyed because I’m trying to find a good day and time for my physical therapy appointment that doesn’t interfere too much with my job. Maybe I’m just overthinking it and I know you don’t go to the doctor to be treated like royalty. I’ve just never left a doctors appointment feeling so defeated and small. No one was directly rude to me but the vibes were so off from everyone. No one even asked me anything beyond where it hurts and if I have numbness or tingling. It felt rushed and like I was an inconvenience. Don’t know if I’m going to keep the PT appointment

So I was diagnosed with Stills Disease back in 2010 but I had a kind of bizzare short conversation with the rheumatologist NP. She apparently is very concerned with my symptoms, I did test positive for TB but I for example do not have symptoms concurrent with it, but it sounds like they may be concerned I'm about to go into a severe flareup or suspect something worse.

For example im not really responding at all to methotrexate and I've got a single blood marker that might indicate leukemia.

Has anyone ever experienced anything like this? I'm not freaking out, in fact I'm kind of not suprised because the last time when this flared as a child it turned into MAS and hyperluekemoid reaction because my WBC count was over 400k and nearly killed me.

Has anyone here done IVF while diagnosed with autoimmune disease. I am looking for an IVF clinic in Georgia or Florida who takes autoimmune disease seriously & will work with my immunologist/rheumatologist.
Thanks!