Anyone here with Anti-TIF-1γ Antibody-Positive Dermatomyositis?

@pm56, I did a search of Connect but didn't find a member with the specific Anti-TIF-1γ antibody positive but there are quite a few members and discussions that mention Dermatomyositis. I thought you might like to scan through them while you wait for responses from members with some experience - https://connect.mayoclinic.org/search/.

I did find a couple of references that might provide some more information for you in case you haven't already seen them.
-- A Case of Anti-TIF1γ Antibody-Positive Dermatomyositis Associated With Malignancy:
https://pmc.ncbi.nlm.nih.gov/articles/PMC12256074/
-- Microvascular abnormalities between anti-TIF1-γ-associated dermatomyositis with and without malignancy:
https://pmc.ncbi.nlm.nih.gov/articles/PMC12057095/

Thank you so much. I had already gone through the myositis-related posts to see if I could find anyone who mentioned the same autoantibody, but I couldn’t find anyone. Hoping someone will see my post and weigh in. Appreciate the other two links.
Best,
Pauline

Hello ! I am new to the site but found your post in an internet search . I too have the tif-1 antibody . I was diagnosed with CLL in 2018 and completed treatment in 2024. A few months later developed full blown dermatomyositis with full body rash and muscle weakness . I am currently taking Plaquenil and on IVIG infusions monthly . I have had multiple scans and blood tests for solid tumors which are much more common in this antibody group, but scans and markers for different cancers so far have come back negative thankfully . Dermatomyositis is uncommon in lymphoma type cancers but does happen so it may be related to that. Not sure if the disease was hiding inside me and waiting to come out or if my immune suppressant medications used to treat the CLL had some effect and then when I went off of them the disease manifested ? My practitioners don’t have any answers unfortunately as it is pretty rare . I also started HrT as I am 54 and post menopausal , 2 weeks before symptoms started so I do believe that this hormone therapy activated something in my immune system as well . From what I have read this is a complex disease process and a perfect storm of several things comes together to trigger it . I wish they knew more but am grateful that there are more treatment options than there used to be . I am mostly back to being able to do everything physically I could do before . Back to playing pickleball and going to gym and hiking and domestic things . In the worst of my early days before the Plaquenil I couldn’t even shower myself or walk properly or lift anything even my arms to put medicated cream on my rashes . So I am grateful for where I am now . The scalp is honestly still very difficult as I had significant rashes in the scalp and hair loss as well as burning and constant itching of the scalp. It was really debilitating . My hair is now coming back slowly and the rash is improving with the ivig . I see your post is from several months ago . I hope you are seeing success with your treatments.

Welcome @veganlady, I am happy to see that you have connected with @pm56. Thank you for sharing your experience with @pm56 so she knows that she is not alone. Have you met others with Anti-TIF-1γ?

@veganlady - thank you so much for sharing! Mine also popped up after I switched from Cosentyx to Remicade so I'm wondering if it was triggered by the change. I have done all the cancer screenings and all are negative, so I'll continue with annual lung, abdomen, pelvic CT scans, and a bi-annual uterine biopsy. I was hospitalized for almost 3 weeks over Thanksgiving and a muscle biopsy showed that it was mostly steroid myopathy compounded by adrenal insufficiency that seemed to be causing severe weakness and dysphagia more than the DM. I started IVIG in the hospital and saw almost immediate improvement so I was sure that we'd see more progress with additional rounds, but I've just been diagnosed with a clot in the brain this week after developing a spasm on one side of my face. I was literally just approved for the second round of IVIG and had just scheduled the home infusion for this past Friday. I had to cancel it, and I'm feeling pretty devastated as I was feeling confident that IVIG was going to do it for me, but right now my neurologist, rheumatologist and hematologist and not all on the same page so I'm feeling confused and a bit uncertain of where I go from here. I have a cerebral angiogram scheduled. Hoping this is just a temporary blip, and I can get back on track with the IVIG!

Thank you @johnbishop for making sure I saw veganlady's post 🙂

Hello Pauline,

Thank you for your response. Its good to be able to speak with you!

I am so sorry about the journey you have been through. I can only imagine how frightening it has all been and how much uncertainty you must still feel. I hope that your holiday with your children was enjoyable. It is not silly at all to want your time with them too feel joyful and to have normalcy. We are mom's, and never want to worry or burden our children. We want to be the strong and healthy ones so that we can always be there for them. It is my worst feeling of anxiety when I feel I cannot be present for them and show up for them in the way they were used to.

I also understand what you mean about the fear that can arise the more you read about this disease. I certainly also felt that way when I was diagnosed with CLL. I am heartened though to have this and CLL at a time when medical research has and continues to provide more and more options to improve our quality and quantity of life with these conditions that even 10 years ago did not hold such promise. There is hope for a good life that is pretty close to normal once we find a medication regimen that gets the inflammation of our disease under control. Unfortunately, each persons combination is usually found by trial and error and can take some time find. In the meantime, I try to focus on the hopefulness and positive aspects of the future and daily improvements no matter how small, and am grateful for the support of others who have gone before me in this journey.

I have read a great deal, and I am wondering if these new immunotherapies which are intended to block specific aspects of immune cell behaviors and replication also cause specific changes to the cell itself which then results in those cells not looking the same and our bodies then attacking them thinking they are foreign, and no longer our cells. Perhaps a new type of protein to the cell surface? We will likely never know, but it is a theory I have. Also, so much of these autoimmune diseases seem to pop up in women around times of key hormonal shifts, such as menopause, pregnancy, puberty.. Hormones profoundly affect the immune system and this is why I felt my starting HRT and having my first known symptoms of this within 2 weeks of my first dose is a likely contributor.

Of course, I also think that there must be a predisposition to the disease in the first pace as this does not happen to everyone who takes these immune therapy medications. It is very complex and the research just isn't there yet. However it is hard to not keep trying to understand the why.. at least for me it is.

I too had all the cancer screenings. Mammogram, Colo Guard, CT of Pelvis, Abdomen, Chest, and an Ultrasound of the pelvis as well as ovarian ca tumor markers. Thank fully, they were negative and I will get these tests every year for the next 3 years even though it is possible that my CLL which is a lymphoma type of a blood cancer was the cancer accompanying my Dermatomyositis.

I did have several of the tests for Dermatomyositis. Of these, my ANA was elevated, Creatine was low, My skin biopsy was non descript, my markers were negative with the exception of TIF-1. I never had an EMG or a muscle biopsy as my symptoms were so textbook, my Rheumatologist, and Dermatologist both agreed that any results would not affect any treatment decisions or add much value .

I have had multiple bone marrow biopsies which have a horrible reputation for being painful, and I did to find them to be as bad as I worried they would be. So, hopefully if you need a muscle biopsy you will find the fear to be worse than the actual event. I always would get myself worked up for days before the biopsy and was so relieved it was over. I did ask my doctor for anxiety medication and pre med with pain medication prior and this was helpful.

I'm so sorry to hear of your hospitalization. I am grateful the IVIG was helpful to you! It appears from what I'm reading that it is a very effective and well regarded treatment for our disease, especially the scalp issues and hard to treat skin problems that our marker seems to have more of an issue with. I only receive a once a month infusion and my second infusion will be on February 3rd. I have seen an improvement in my stiffness and ability to move and bend and even walk more naturally and without the limitations and discomfort I had before. I'm hoping that my miserable scalp will be improved in time with more doses.

I'm so sorry about your recent development of the clot in your brain.. As clots are a possible side effect of the IVIG, are they thinking it is related to your IVIG treatments? When is your angiogram?

Are you currently taking any medications other than steroids? Are you employing any natural or lifestyle interventions that you are finding helpful at all?

I don't know if you are a person of faith, but I am, and will pray for you in this, and that there is the best possible outcome and that your team will be able to determine the best way to get your disease under control.

Best,
Lisa

Hello all,

I tested positive for the TIF1 gamma antibody about 3 weeks ago; my rheumatologist ordered the inflammatory myopathy profile (along with lots of other tests) after my ANA titer came back positive. I was referred to oncology, where they did a brain MRI, chest/abdomen/pelvis CT scan, and breast/pelvic/thyroid ultrasound. Those are clear, and the plan is to screen again in 6 months. My rheumatologist wants me to start steroids and methotrexate. Feeling a little bit afraid with all of this going on; I'm 30 years old and wasn't expecting all of this to happen from a positive ANA titer, although I had noticed progressive muscle weakness over the past few months and had suddenly lost a lot of weight (my BMI is currently 18.3). Does anyone know of TIF1 gamma cases that were successfully treated, and the patient was able to be healthy and well again?

Use of steroids (long term) cause bone loss.

@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

@sarahlee2 yes there are lots of people who are successfully treated! Some people do well with just Methotrexate. Others sometimes do better with other treatments like IVIg.

Steroids are usually recommended in the beginning as they work quickly on your immune system while you wait for the Methotrexate to kick in as that takes longer to work.

I am not the poster child for Tif-1 as I have multiple other autoimmune conditions plus steroid myopathy and adrenal insufficiency, but there are plenty of people living with different kinds of myositis who are being successfully treated and living full lives 🙂

My only advice is try to spend as little time on the steroid as you can. It works great but the longer you spend on it, the harder it is to get off it. Good luck - you’ve got this!