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Refractory TIF-1 Gamma Positive Dermatomyositis
My husband was diagnosed 4 years ago with Tif-1 gamma positive dermatomyositis. Since his diagnosis I have watch him wither away to half of what he used to be. When we first started this journey, everything felt positive like he was going to get stability with this. But after countless treatment regimens and countless refusals from insurances that feeling has turned from positive to negative. He is listed as refractory now due to no improvement with the countless regimens that have been tried. He recently was admitted into the hospital to undergo Plasmapheresis, for the chance that it would help. We were on the positive side of the possibility of it helping. Upon discharge it was a blessing. He felt better. He could walk without staggering, being extremely short of breath, and extremely weak. Now he was still short of breath and weak but nothing like he had been. We were looking forward with positivity on that little bit of help. But all that was short lived. Within a week he was back to where we started the week prior. Sleeping for 12- 16 hours a day, waking up feeling like he had already worked all day long. Which since all this he hasn't worked in past 3 years. Walking from our bedroom to the bathroom and being even more exhausted even with his cpap on which has had to be increased several times. Brushing his hair and taking 15 minutes to do that when prior wasn't even a good minute. I work in the medical field every day, so unfortunately, I'm used to seeing this in other people and feeling helping for them. But it hits completely different when you're lying next to your husband not knowing if you're going to wake up with him or without him because his lungs and heart have gotten too weak to function. Is there anyone else out there with REFRACTORY TIF-1 GAMMA POSITIVE DERMATOMYOSIS?
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@phoenixuprising. Welcome to Mayo Clinic Connect! I’m glad you found us especially with such a difficult diagnosis. Members will be along, maybe tomorrow . What led you to a doctor and then diagnosis?
I’m sure you will get some help soon. Think of other questions that you would like answerd.
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1 Reaction@becsbuddy he kept coming home complaining about hurting all over, not being able to climb up into the truck (18-wheeler) like he usually does and not being able to get up from a squatted position. It bothered me, so when I went to see my Neurologist, I told him that I need him to see my husband as soon as possible and explained. He had him in the next day, which was surprising. That day he performed an NCS/EMG and drew blood. Two weeks later we came back for results and he said he knew what it was when he did the NCS/EMG but to what depth not until the blood work came back. He told us that the night of our visit he went home and it bothered him all night, that when he came back into the office, he called the lab and added the extremely rare types to the order. He said he was glad he did, because we popped positive for one of them.
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3 ReactionsThe symptoms of TIF-1 feel and look very familiar. I had a persistent skin rash from 2020 until March 2025. It's improved significantly since then, but my muscle weakness remains. However, I was diagnosed with Stevens-Johnson Syndrome (SJS).
Initially, methotrexate helped reduce the skin lesions, but I experienced side effects such as hair loss and excessive bleeding.
Medications that may trigger TIF-1 include corticosteroids, azathioprine, methotrexate, mycophenolate mofetil, leflunomide, tacrolimus, immunoglobulins, and rituximab.
By the way, was your husband ever checked for APS (Antiphospholipid Syndrome)?
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3 ReactionsI’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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4 Reactions@phoenixuprising there is a trial for refractory autoimmune diseases listed. Hope that helps.
https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT05869955
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3 Reactions@swalex no he hasn't
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1 Reaction@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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2 ReactionsThank you for sharing. I was worried about the biopsy. Hoping the CAR-T cell therapy is something that may be available to him to try. Best of luck.
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2 Reactions@pm56 He is really hesitant to clinical trials due to the possibility of getting worse with it instead of better. But I'm reading into it more. Thank you.
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2 ReactionsI