Update from Blakedfw32

July 10, 2011 at 4:29 pm

Hello – I thought I would share my progress, as I understand it.

On June 14, I started weekly IVIG’s (for 6 weeks) and daily doses of 60mg predisone(30 days). I am on day 29, however I went to Doctor for follow-up late last week.

As mentioned earlier in this post, the only blood work that was abnormal was my ASIALO GM1 IGM, it was in the high range(50’s). It was taken before the hi-dose 5 day IVIG treatment that took place over the Memorial Day weekend.

New blood work came in last week, and since treatments started on June 13, the ASAILO GM1 IGM has almost doubled (90s) and now the GM1 IGM has now moved into the high range (went from normal to 60’s). By the way, the antibody blood work is in the group GAINGLIOSIDE GM1 AB-which I wish I knew more about those antibodies. My GM1 IGG and MAG IgM are currently in normal range.

So…here are the next steps per my Neuro, 60 more days of 60mg predisone now added, along with 500mg methylpredisone (IV) weekly and 8 more weeks of IVIG. I told her about concerns of the side effects of predisone and she commented that is the least of our worries you have a bigger issue at hand.

My doctor appeared pretty baffled, esp since the GM1 IGM now is high. She said I am either a non-responder, or very very slow. She mentioned that she just got back from a conference(don’t know what conference) and that Europe was more advanced in studies with this disease and was going to reach out to a peer of hers and explain my situation-to see if we need to change current path of prescribes. She also noted that I must have a very very variant to the CIDP disorder as that my pain is asymmetrical, and primarily sensory….I will note pain has increased and leg buzzes a lot more these days. Knee is weakening, but I can still walk okay.

It is also worth noting that if the predisone/IVIG treatment does not work, my Dr. said next steps may be the rituximab path. It will be interesting to learn if her colleague in Europe has any other advice. I have not ruled out a trip to Detroit to visit Dr. Lewis at Wayne State. I hope someone finds this useful and I hope everybody is doing well!—Cheers!