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Multiple Autoimmune Diseases & Post Covid

Autoimmune Diseases | Last Active: Oct 12, 2023 | Replies (113)

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@slkanowitz

I have been in a similar situation and know how terribly frustrating and depressing this can be. I do have some suggestions that may prove helpful. To confirm you have RA, xrays and MRI help in diagnosis IF you have joint erosions. Your worst and longest affected joints should be xrayed first. If erosions show up MRI not needed. If no erosions seen, then an MRI of worst joint should be done.
For the muscle wasting, skeletal muscle enzymes in the blood can be checked to rule out autoimmune myositis. CK, aldolase, ALT, AST and LDH are enzymes elevated in myositis. There is then a myositis antibody panel if those enzymes are elevated. Myositis causes muscle weakness as well as atrophy. Atrophy can also occur just from immobility caused by pain and stiffness, fatigue associated with RA.
Lastly the lack of antibody response to your vaccine could indicate an immune deficiency. This is paradoxically common in autoimmune disorders that one has excess antibodies directed at your own tissues but a lack of antibodies directed At infectious agents such as bacteria, viruses fungi. This can be measured by a blood test of immunoglobulins (antibodies), IGG ,IGA, IGM. These are different categories of antibodies. If deficient one would be prone to infections and not make sufficient antibodies to vaccines. These aren’t typical blood tests done routinely. You definitely need to be under the care of a rheumatologist. Antidepressants may help you as chronic pain depletes the neurotransmitters in the brain that affect mood. If an antidepressant raises your neurotransmitter levels, then the situational problems of chronic illness may be easier to cope with. A therapist or life coach would be helpful too, as we autoimmune sufferers need someone to talk to. I wish you better luck in finding an RA treatment that works well. I’m in the same boat with lupus and RA and no response to many meds I have tried.

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Replies to "I have been in a similar situation and know how terribly frustrating and depressing this can..."

Really appreciate your response! I have had X-rays and MRIs from the brain down. I was initially told that nothing was seen, but always had a trusted physician review. My true feeling (and I am not talking about conspiracy) is that Stanford told me this was all in my head for a year because they didn’t want to report it. My primary, and then surgeon (from a fractured ankle 7 years ago) reviewed my imaging and said “get out of here for this, you are full of inflammation!” I have seen several rheumatologists who have thrown their hands up in the air. They seem to want everything to be text book and this just isn’t the case. I will ask for these labs. Once my CCP and RA tests were done, it was finally acknowledged that I had a problem. I don’t feel it is RA. I have been pushing myself until about a month ago. I had to scale back, but my muscles were deteriorating even with pushing through. I’m not disputing what you are sharing at all - just letting you know what has been happening. Thank you for your response. I’m actually going to read it again later. I’m also going to upload some pictures later. Strange things. I woke up one morning with a knee the size of a melon. My non surgical ankle one morning the size of a baseball. It’s so odd to have things pop up out of nowhere. I’m sorry that you are in a similar situation. I actually just got a couple of referrals for therapists today. It is too depressing for me to manage on my own. Again, thank you. Since this happened post vaccines, I’m looking for a more forward thinking specialist. I’ve seen the one size fits all and they get frustrated with me because I’m not responding to their treatment. I will share anything that I learn along the way. Best to you!! How long have you been enduring this?