Connect
← Return to Anyone here with Anti-TIF-1γ Antibody-Positive Dermatomyositis?
Discussion
Anyone here with Anti-TIF-1γ Antibody-Positive Dermatomyositis?
Autoimmune Diseases | Last Active: Feb 16 2:16pm | Replies (27)Comment receiving replies
@veganlady I’m glad that you’ve seen improvement on IVIg as it sounds like you’ve been through a lot too. I’m on Methotrexate as well as Medrol. I did wind up having a muscle biopsy. The recovery wasn’t too bad and it showed I have severe type II atrophy - steroid myopathy. It’s complicated by adrenal insufficiency. I’m not sure where I go from here. I need to get off steroids but I can’t as my adrenal glands are suppressed: the double whammy lol.
My own neurologist pushed me to go for a second neurovascular opinion yesterday, and the second opinion advised against the cerebral angiogram as it wouldn’t change the outcome - I’m already on anticoagulant therapy so doing it just for the sake of doing it wouldn’t change how we proceed, so I cancelled it. It would have been today, so I’m really relieved!
We were originally thinking the IVIg caused it as I got the first dose on 12/3 and the clot was seen on 1/19 - but I had an MRI in the hospital on 12/1 and they didn’t say there was a clot … but the report on 1/19 went back to compare to the 12/1 imaging and they’re now saying it was already there - so they missed it. So thankfully we have the imaging that tells us without a doubt that it wasn’t the IVIg that caused it. It was more likely when I came off Eliquis in Nov for 3 days for a uterine biopsy. So my neurology, neurovascular, hematology and rheumatology team are evaluating the risk of recommencing IVIg.
I was WFPB for a full year to see if it would change my inflammatory markers and to see how it affected me overall, and when I weaned last March it was one of the worst flares I’d ever had. I didn’t stay fully vegan, but I still eat organic, no processed foods, no seed oils, no refined sugar, and now primarily vegetarian/flexitarian.
The neurologist said I am no longer cleared to drive, so I started home PT yesterday and am determined to get back behind the wheel. I think that’s been the hardest - losing my independence as my legs are so weak.
I have been down lately but I have faith I’ll get there. It’s just been a lot all at once. I could use a a little break. Thank you for taking the time to respond and for your kind thoughtfulness.
Pauline
Replies to "@veganlady I’m glad that you’ve seen improvement on IVIg as it sounds like you’ve been through..."
Connect
@pm56
Hello Pauline,
It's only natural to feel down with all of the challenges you have had to overcome as well as the ones you are facing now. I remember one particularly bad day, praying for God to have mercy on me. Sometimes things feel so insurmountable, and hopeless. I'm glad he IVIG will still be possible for you. I have read that it takes several doses to see results. I just had my second dose. I haven't noticed a huge difference yet but I remain hopeful.
I went whole food plant based, no processed, organic when possible back in 2018 when I was diagnosed with CLL. It made a significant difference. Most people with my markers progressed to needing treatment in @ 3 years. I went almost 6. I was obsessed with being perfect with it, and really never cheated, convinced my health would go downhill quickly if I wasn't perfect with it. I also started going to the gym daily, I juiced, took multiple supplements, underwent treatment, and then still developed Dermatomyositis. It was after this diagnosis, that I decided to do my best with it, and actually adopted more of a Mediterranean diet, and added eggs and fish back in weekly to try to help with muscle re building as I lost so much muscle in this condition . I do think its part of the equation, eating whole foods and not processed junk, basically giving your body what it needs to function at its best, but I also think there are plenty of things out of our control, that also factor in. I also try to do some physical activity every day. I'm no longer focusing on perfect, but just the best I can and that changes depending on the day. Some days are better than others.
I hope your PT brings you an increase in strength and independence. Know that I am praying daily for you!
Lisa