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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
@sarahlee2 oh no! I’m so sorry! I’m just wondering out loud … since you tested positive for latent TB, whether IVIg might be a safer alternative to get you started on treatment right now. I don’t think there’s a contraindication as it doesn’t lower your immunity (if anything, you’re gaining everyone else’s immunity). Here, it’s often the path that the insurance companies will make you start with a less expensive treatment before they’ll cover you for a mostly costly one. Many start with MTX, then Rituxan, and then eventually wind up on IVIg, but who knows - having latent TB might be one way you can by-pass all that. I would certainly ask!
Replies to "@sarahlee2 oh no! I’m so sorry! I’m just wondering out loud … since you tested positive..."
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@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?