ANCA MPO and Systemic sclerosis positive - Sudden ESR 93

Posted by irishponies @irishponies, Dec 31, 2022

Hello,

ANCA MPO and Systemic sclerosis positive – No response to methotrexate/steroids

Rituxan infusions June 2022- 6 months later, no response – Repeat Rituxan infusions December

December Labs: ANCA and Scl-70 positive; IgM <25

ESR 93 markedly elevated – ESR Labs: 07/22 through 09/01/22 – "0"; 09/20/22 – 4; 10/15/22 – 65; 11/29/22 – 93

Next rheumatology appointment 01/04/23. An internet review of "markedly elevated ESR '' is not helpful and/or is terrifying.

At this point, I have no idea what to even think about this. I have done every painful test, undergone horrible biopsies, had infusions and infiltrations, lost my hair, lost my career, developed Cushing's Syndrome from steroids, consumed pill after pill and suffered their side effects, appeared at every appointment, and spent hundreds of dollars traveling to specialty/university/etc. hospitals. The only result is to have doctor after doctor nod at me as I sit humiliated in a hospital gown and listen to them tell me, "I don't know but I will monitor you".

I have been a professional athlete for over 35 years. Well, I was one. That is the career that is gone. I had an extremely healthy lifestyle: no smoking, no alcohol (maybe a champagne toast at celebrations), a 7-day a week physical fitness regimen, vegetarian diet, etc.

Perhaps one of this group, people that have experienced modern medicine, can give me some advice/direction. I am willing to have plasmapheresis and/or more Rituxan. Chemotherapy drugs, even low dose, make me extremely ill, so methotrexate and cyclophosphamide are not an option. CIDP and MS have been extentsively tested for and ruled out.

Thank you.

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