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Old 08-19-2011, 10:47 AM
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barb02 barb02 is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
barb02 barb02 is offline
Grand Magnate
barb02's Avatar
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
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I also am not on any dmd's. I have not been since spring 2008. I was dx in March 2007. I first tried betaseron, but has an allergic reaction when increasing the dose from 25 to 50%. So the doctors are in agreement, I can not take any interferons.

Next I tried copaxone. I was on it for 4 1/2 months and had 6 IPIR's within that time -- the last two coming within a week of each other. In addition to the classic IPIR reaction, I would also get high fevers and shake for hours about an hour after each IPIR. So then I moved on to tysabri. I had five infusions and three infusion/allergic reactions. After the fourth infusion, they decided to test for antibodies and I did test positive. So based on the instructions from the drug company during the fifth infusion, they gave my an iv of bendryl prior to the actual infusion and slowed down the infusion time. 45 minutes into it I went into shock and had to be given more bendryl and oxygen. So that was the end of my tysabri story.

Several months later I decided to try copaxone again. I had one injection. I did not experience an IPIR, but about three hours after the injection my temperature shot up to 103.2 and I spent several hours shaking. Representatives from copaxone said that was not a normal reaction.

I have not had any new lesions since May 2008 and my symptoms appear to be stable so my neuro is comfortable with the fact I am not on any meds. We discussed gylenia, but he is not comfortable with prescribing it to me at this point unless I really want to try it. AND I DON'T

Good luck with making the decision. I know it is a tough one. One other thing I want to mention is that I was dx when I was 50 and I am now 54. If I younger I would probably still be trying to find something that I could tolerate.
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