Chemo

[LaurenK]

Anyone here ever use a low dose of chemo to stay in remission?

[PowPow]

no, though enbrel was mentioned for one of my children by our rheumatologist. are you finding someone who is thinking this may be an avenue for severe cases with clear immunomodulator response?

Edited August 15, 2012 by PowPow

[peglem]

My daughter's pediatrician is looking for a rheumy who will try methotrexate or something like that for my daughter. He thinks it will be safer than monthly prednisone tapers. IDK, it scares me.

[MomWithOCDSon]

I just recently found out that a friend of mine's DS19 has been diagnosed with vasculitis, which is another auto-immune disease. He was treated with chemotherapy, but this disease is truly life-threatening, so the pros were viewed to outweigh the cons.

[lfran]

Just be aware that that is one of the drugs that severely affects the folic acid cycle, so make sure your docs know what to do about that, and it is probably a good idea to get tested for MTHFR or other folate issues if you are considering going that route.

[1tiredmama]

I have an autoimmune disorder, and Imuran gave me my life back--I got to the point where I was barely functioning. Given that my ds is 18 in a few weeks, has a severe case of PANDAS, hasn't been functional in years, (and in light of my own history) I am thinking of going this route. Dr. L. was not opposed to the idea when I brought it up, but we did not discuss it at length.

 

I think this might be different from chemo, but it is one way rheumatologist's keep the immune system in check.

Edited August 16, 2012 by 1tiredmama

[LaurenK]

I'm so sorry to hear that. What do you mean he has not been functional in years? I hope that Dr. L can help you.