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Anyone here with Anti-TIF-1γ Antibody-Positive Dermatomyositis?
Autoimmune Diseases | Last Active: Feb 16 2:16pm | Replies (27)Comment receiving replies
@pm56
Thanks for sharing your thoughts. 🙂 It's really nice to hear from some people who are also facing this diagnosis, as I don't know anyone in person who is dealing with something similar.
Unfortunately I don't think IVIG is available in Pakistan. My understanding is that it's created from plasma donations, and donating blood of any kind isn't super widespread here. It's looking like I'll be able to start the Rituximab simultaneously with the TB antibiotics, although the rheumatologist says I need to first get over this latest bout of gastroenteritis which has had me throwing up all weekend (she also told me today to start being more careful about infections, avoiding large gatherings, etc). She's not sure how much of the muscle damage is going to be reversible though and was saying that from my tests it looks like some of the muscle may have already turned to fat.
I was reading through some of the comments that have been posted in the last few days and was sad to see that it looks like you might also have some irreversible muscle damage. 🙁 Does your doctor think that physiotherapy might be helpful with this sort of thing?
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@sarahlee2 It sounds like you've really been put through your paces lately. Hoping that's it for a while for you now! IVIg is from collected plasma donations, so I understand that it might not be available everywhere. They can usually see fatty infiltration on the MRI imaging, but my understanding is that potentially that can be reversed with PT, depending on the severity. TBH I never felt better than when I was swimming 3 times a week. I was the slowest person in the lanes, but it didn't matter. The 9-year old swim team swam laps around me, BUT - it didn't hurt my muscles or joints as I started slow and just swam steadily. I built from 15 minutes to 45. Had to stop when I became unable to get out of the pool unassisted one day and was too embarrassed to return. Now, unable to drive, I'm sorry I didn't keep going as maybe I' might have retained more mobility. But mine is from steroid myopathy not DM (which is why I advised caution on staying on it for too long - I was on and off . . . mostly on over 7 years . . . and its done irreversible damage to my type 2 muscle fibers). Since I have been advised to stop driving, I started home PT 10 days ago. My PT comes to the house and I work on the exercises in between. Hoping with her help I can strengthen what I have left and then adapt my car so I can regain my independence. I'll get there. It just might take a minute (or two!). Hope you're feeling better fast and that you can get started on treatment so you're back on your feet quickly. Hang in there 🙂