r/Autoimmune

I really just want to know if anyone has had a similar experience and if so what helped and what came of it. I know that autoimmune is extremely fickle, so I'm not looking for a diagnosis lol that's what I have Dr. appointments for.

I've (30F) had unknown issues with my health since childhood. For the past year, I have been having Tachycardic and Bradycardic episodes daily, with no distinctive cause. A few weeks ago, I started having joint pain. It started in my left elbow, then traveled to all over my body (fingers, toes, hips, knees, ankles, wrists, back and neck). I've had chronic fatigue on and off for a long time, and so I didn't really think too much of it when the past couple of months I have been really low energy and have to force myself to go to work, but then the joint pain became really obvious. I saw a virtual doctor, who prescribed me with Methoprednisone (6 day taper), which did not really help. Once I got off of it, the pain was much worse and my symtoms seemed to intensify. I did a full blood work-up 3 days after I finished the steroid with C-Reactive Protein, ANA (Multiplex w/reflex), RF, TSH, and Thyroid Antibody. My C-Reactive was elevated, ANA Positive with SCL-70 marking 1.4 (no tider was done so I don't have those numbers).

I don't see the Rheum until December, but I am really struggling with the pain. It seems to get worse later into the day with little to no relief from at home Tylenol, Aleve, or Ibuprofen. Since the pain bounces from joint to joint, heat/ice doesn't really help either. Standing in the shower too long makes the leg joints aggravated and I just feel hopeless.

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.

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.

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.

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.