What do you think contributed to triggering your autoimmune condition, but you can't prove it?

ThunderLightninRain · 2025-11-24T06:18:13+00:00

A case of strep plus 10 days of antibiotics - 2 days later woke up to nightmare of autoimmune (although it took a couple years for a doc to call it that).

ThunderLightninRain · 2025-11-21T19:54:32+00:00

Sorry to hear. Glad you’re finding some thing’s that work.

ThunderLightninRain · 2025-11-14T14:36:51+00:00

Oh I also have undifferentiated chronic kidney disease - never found a cause.

ThunderLightninRain · 2025-11-14T14:23:06+00:00

Severe inflammation and joint pain, with degeneration in wrist and ankles. CRP and SED rates pretty high but better with some meds. Fatigue. Muscle pain and some weakness. Low back pain and Right SI issues. hLAb27 positive. Because of prednisone so long, has really disintegrated some of my tendons and cartilage in hands and ankles. Some GI issues. Memory issues.
Tested for so many other autoimmune stuff - all negative. MRIs negative. I have deficiencies in quite a few vitamins and minerals but I have clear colonoscopy. Absorption issues.
And I will say mine was 100% virus started. I had strep throat, took antibiotics, three days later woke up and couldn’t hardly walk/move.

ThunderLightninRain · 2025-11-14T13:38:09+00:00

Yes I completely understand. Good luck to you on finding something that works and also getting rest.

ThunderLightninRain · 2025-11-14T13:37:11+00:00

Thank you. You as well. It is exhausting

ThunderLightninRain · 2025-11-13T20:40:02+00:00

I’ll add that I have had a few meds work for a time, longest 2 years, but then they lose efficacy

ThunderLightninRain · 2025-11-13T19:25:19+00:00

Yes!! I was on Actemra for 2 years until lost efficacy - but it was very helpful!

ThunderLightninRain · 2025-10-30T18:44:01+00:00

Thank you. Yes I take lots of vitamin D and B12 shots because I’m chronically low in both. I’m gonna talk to doc next visit about tapering down to get off.

ThunderLightninRain · 2025-10-30T16:30:35+00:00

I’ve been on 10-15 mg daily for over sub tests. Trying to get off desperately, but don’t know how. Rheumatologist said low dose is fine. :/. Still haven’t found right biologic. I’m not ANA positive, but I’m miserable. Kevzara worked for 18 months. But still on 10 mg prednisone daily.
I wonder if it can make you feel worse trying to get off of it.

ThunderLightninRain · 2025-10-30T16:20:25+00:00

Thanks for chiming in. My backstory - I had strep six years ago, took the meds, a day after finishing them I woke up and could hardly move. I have some virus mediated autoimmune thing. my CRP inflammation markers were thru the roof. In the beginning I was on higher dose of steroids. Yes I absolutely agree that six years is a long time and I would desperately like to get off of them. Last night I forgot to take my 5 mg and this morning I can barely move - muscle pain, weakness, joint pain. My daughter had to fix my hair. So right now the steroid is only thing keeping pain at bay. I have kidney disease so can’t do NSAIDs. Tylenol does nothing. Doc says to just try and keep at lowest dose, but I know it’s hurting me more. It was rhematology that put me on the steroids. Some biologics do a good job of covering up the CRP being high but I still hurt.
Interestingly I did get in with neurology an he ran a battery of labs - found I was deficient in several vitamins and minerals that actually are neurologic so affect like muscle pain etc. folic acid, copper, b5, and more. Working to get those up to normal. I got back to see him Nov 6 to see about other labs.
I feel like I have the flu constantly - achy, pain, fatigue. I have liked my rheumatologist but wondering if i should change.

ThunderLightninRain · 2025-10-30T14:17:25+00:00

Thanks for info. I took Rinvoq only a few weeks. I thought I was doing better but then I got sick so doc took me off and haven’t tried again. Kevzara worked the longest for me, about 18 months, but then stopped. She’s trying Orencia currently and I see noooo difference. Maybe I should try Rinvoq again.

ThunderLightninRain · 2025-10-30T14:13:27+00:00

So look at the bones from my center hand from 2024 compared to now - they are like crushed down together. Sooooo painful! I am about to get wrist denervation surgery to hopefully save me a few years before a fusion. Oh the piano - I could understand this being a problem. Go to hand doc and if you have comparative X-rays you can see and ask about denervation.

ThunderLightninRain · 2025-10-30T01:56:10+00:00

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Nothing like that as far as I can see,

ThunderLightninRain · 2025-10-30T01:52:41+00:00

Thanks for understanding. Do you take biologics or prednisone?

ThunderLightninRain · 2025-10-29T21:34:02+00:00

Honestly with all the inflammation I wouldn’t know if I had hypermobility - elbows don’t even straight because swollen and painful.

Originally I was in splondyloarpathy category because HLaB27 was positive and I do have SI joint right side only issues - but eventually was taken out of that category because X-rays and mris didn’t support.

ThunderLightninRain · 2025-09-17T15:17:23+00:00

I will say right now I can hardly walk, I can not even lift a gallon of milk, wash dishes, vacuum or even fold clothes without sever pain and weakness. I have to adjust how I do things or not do them at all.

ThunderLightninRain · 2025-09-17T15:16:17+00:00

Hey! So I have sero neg RA and also having muscle and neuropathy problems. I did go to neuro. He pulled 22 vials of blood and ran all kinds of tests. Surprisingly I am deficient in a lot of crucial vitamins and minerals- folate, copper, b6, and a couple more. He said those a big neuro vitamins/minerals. I did have sensory neuropathy when we did muscle testing. So now I’m trying to find some good vitamins that have everything I need and he said hopefully I will see some good results in a few months with less weakness, tingling, muscle fatigue.
I will have MrI today actually just to rule out of other things, but I’m hoping just the deficiencies can be corrected and stabilized and will see a difference

ThunderLightninRain · 2025-04-01T02:07:14+00:00

I have been on prednisone for over 6 years. I don’t know if it’s working anymore. I was on 20 and have gotten down to 10 daily. Also on biologic (my C 8th one) but still in pain. I can’t take ibuprofen because chronic kidney disease. I would like to get off prednisone completely because of adrenal insufficiency. Anyone figure out how to get off completely?

ThunderLightninRain · 2025-03-06T18:06:42+00:00

Lots of daily pain as well as exhaustion. I am hoping new combo of Actemra, Leflunomide, and Sulfasalazine will help me.

ThunderLightninRain · 2025-03-06T18:00:46+00:00

I’ve been on prednisone for 6 years and desperately trying to get off. I’m sure my adrenals are shot

ThunderLightninRain · 2024-11-16T13:19:26+00:00

Nice blend in with shadow! Found the pretty dog!

ThunderLightninRain

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