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Refractory TIF-1 Gamma Positive Dermatomyositis

Autoimmune Diseases | Last Active: Nov 4 9:38am | Replies (10)
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I’m so sorry to hear about your husband. After 6 years of shuffling and weakness and not being able to get off steroids, I’ve just tested positive for tif-1 gamma dermatomyositis. I posted this week asking for help from anyone else with this specific antibody.

I’m still awaiting my biopsy, but my doctor mentioned IVIG or Rituximab as a possible treatment for me. Has your husband tried either of those? My youngest is a biomedical engineer at Michigan and started looking into newer treatments and told me to look into CAR-T cell treatment and sent me this link to explain it. There may be trials somewhere that might be worth finding that perhaps your husband may qualify for:
https://www.cartautoimmune.com/
Hoping your husband can find a treatment that works for him.

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Replies to "I’m so sorry to hear about your husband. After 6 years of shuffling and weakness and..."
phoenixuprising | @phoenixuprising | Oct 22 10:29pm

@pm56 he is taking weekly IVIG treatments. We have tried to space them out, but everything goes stupid when we do. He can't take Rituximab due to his WBC stay 1.6 to 3. The loading doses for IVIG is a kicker. But once you get past the weeklong migraine its easy. We started IVIG the Monday 12/19/22 and by the 3rd dose we were praying for relief and finally received relief on Christmas day. His biopsy was in his thigh, he says it was too bad at all.
Thank you for sharing the site. I will definitely check it out.

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