I am new to the board, but canít believe that in the 3 years since Iíve had this disease that I have never stumbled across this board. It is a good board to find, & actually the first board Iíve ever posted on!!
I have a question about meds, well more lack of meds. As of this month I am officially off meds and it is making me a bit nervous!
When first Dx I was put on Avonex but pulled off by my Neuro 6 weeks later due to high fevers that lasted way too long regardless of how many fever reducers I was taking. So that rules out rebif & betaseron. Next I was on Copaxone, & I was so happy to have a med that caused no fever! Mind you the shots were not fun, but hey I got use to them & Iím more than willing to try these meds; I have 30 + lesions. Unfortunately five months into copaxone I had a severe allergic reaction. So off the meds I went and my neuro asked me to try desensitization, in hopes that it would work. He told me I have almost no drug options left, so I said no problem & scheduled the desensitization.
While waiting for my allergy appt. I started having vision problems. It turned out to be optic neuritis & I had my first round of IV solumedrol w/ the prednisone step down. I had no problems tolerating the solumedrol or prednisone; & boy was my neuro happy about this; he said at least that treatment was still an option
I had to wait a bit to go to the allergist, needed to get the steroids out of my system, but eventually had the desensitization to copaxone. Sadly it didnít work. I do have to say that I had an MRI before my allergy appt. & for the first time since my Dx I had no active lesions.
So Iíve now been off meds for almost 7 months, and it has just hit me that I may be dealing w/ this disease w/ no other options but steroids if I was to get bad. I think itís making me nervous because for the first time since my Dx I had no active lesions - & since I donít know if it was the copaxone or the steroids, or maybe just the course of my disease Ė I donít know how to feel about my limited options.
Is there anyone on here (on or off meds) that could give me some advice? Iím kind of feeling like I did when I first got Dx Ė scared & helpless.
Thank-you all for reading this -