I was in the CAMMS323 trial and I received Campath (although I still do not know the dosage). I was only diagnosed with RRMS for one year and 2 months before going into the trial. I am currently at month 11, and will likely be pulled out of the study.
I tolerated the infusions very well, and even continued to improve for 6 months after the initial set of infusions, but right around the 6 month mark, I showed symptoms of a relapse and my EDSS score went from ~3-3.5 to a 5.5-6. I no longer was able to even do the timed walk without tripping, and or falling. I was given 5 days of Solu-Medrol and immediately felt better, but 3 weeks to a month later, I showed symptoms of a relapse again. I was given 5 more days of Solu-Medrol, and seemed to get better again. This time, I was sent for an MRI, which was 4 days after I stopped taking the steroid. There was an active lesion, so 5 more days of Solu-Medrol, in case I just needed more. I, of course, felt better, but three weeks later, another relapse. I was sent for another MRI. Surprise, surprise, the same lesion was not only still active, it was worse. Clearly, the Solu-Medrol was aiding with swelling, so I felt better for a short time, even though it had no effect on the underlying cause.
I have now had 5 days of Gamunex (IVIG) (eight days ago I finished the infusions) and have seemed to stabilized, even though I am not good, I am told that I should slowly start to improve over the next few weeks. Although I am rather scared.
I am the only patient that I am aware of that is like me, I was wondering if anyone else had any similar results, because there is only one other patient at the clinc, where I go, that has relapsed at all. She was given Solu-Medrol, and has continued to improve ever since.
I took Rebif for 1 year prior to going into the trial. I did not know until recently that Rebif can provide protection from a relapse for up to 6 months after you stop taking it. I don't know if, for me, the combination of the two drugs was what helped me initially, or what. Currently, my doctor is scratching her head, because I am not like other patients.
Is there anyone else out there that has taken Gamunex for a relapse. I don't know what to expect. I was hoping to hear about other people's experiences with IVIG.
Last edited by LittleLisa
on Thu Nov 19, 2009 11:53 am, edited 1 time in total.