Monday, May 09, 2016
Had a bit of a set back with starting the Lemtrada. My shingles titer came back to low. So, I had to have a Shingles vaccine. Because it's a live vaccine we have to wait 6 weeks now to start. Looks like the new date will the the week of June 20th. I was very disappointed. After psyching myself up to actually take the drug it was very disappointing. Now I'll have to go through the process all over again. I found a great support group online. Most of the folks there have had a really positive experience with the drug. It's NOT a cure, but it's supposed to stop the progression of MS. Some folks actually get function back. It would be great to walk like a sober person instead of having a gait that makes me look drunk! Would also be nice to lose the motorized wheelchair and cane.
Tuesday, April 12, 2016
Time goes on......
Wow. I can't believe so much time has passed since my last blog. Still fighting MS, still walking, albeit with a cane. Sometimes I'm in the chair depending on the day.
Since my last entry I've moved across the country. We now live in TN. The weather is better here for me. Yes, it can be humid in the summer, but the temperature is rarely above 90 in the summer. Unlike CA.
I've also been on Copaxone, Tecfidera and Tysabri for my MS. I've become steroid resistant so steroids no long are effective during exacerbations. The most recent drug I was on, Tysabri, was actually one that I did the best on. In the 9 months I was on it I only had one relapse (a nasty bout with optic neuritis). Unfortunately, I've had to discontinue it because I am no JCV positive. So, no were considering Lemtrada. A drug that on the surface sounds wonderful. A five day run of IV medication followed by a YEAR with nothing, then at one year a three day run of the IV medication. Then your done. Finished. No more medication. Sounds like a miracle drug for MS doesn't it?!?! Pffft, until you read the side effects. Unfortunately, it seems that this particular drug is all that's left for me to try. SO, we're researching and waiting to hear from the nurse that will be assigned to me. We haven't made a decision. (I say WE because my husband's input and thoughts are just as important as mine are during this process). I'll keep you posted. Promise. If any of you have tried Lemtrada I'd love to hear from you.
Since my last entry I've moved across the country. We now live in TN. The weather is better here for me. Yes, it can be humid in the summer, but the temperature is rarely above 90 in the summer. Unlike CA.
I've also been on Copaxone, Tecfidera and Tysabri for my MS. I've become steroid resistant so steroids no long are effective during exacerbations. The most recent drug I was on, Tysabri, was actually one that I did the best on. In the 9 months I was on it I only had one relapse (a nasty bout with optic neuritis). Unfortunately, I've had to discontinue it because I am no JCV positive. So, no were considering Lemtrada. A drug that on the surface sounds wonderful. A five day run of IV medication followed by a YEAR with nothing, then at one year a three day run of the IV medication. Then your done. Finished. No more medication. Sounds like a miracle drug for MS doesn't it?!?! Pffft, until you read the side effects. Unfortunately, it seems that this particular drug is all that's left for me to try. SO, we're researching and waiting to hear from the nurse that will be assigned to me. We haven't made a decision. (I say WE because my husband's input and thoughts are just as important as mine are during this process). I'll keep you posted. Promise. If any of you have tried Lemtrada I'd love to hear from you.
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