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Old 07-06-2012, 01:03 AM #11
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From my understanding from my neuro, rebif and avonex are like "sister" drugs with betaseron. Meaning, you'd probably get the same reactions from all those meds. Like flu like symptoms, etc. Im on copaxone, have been since February. Ive had several IPIRs, have alot of lumps at the injection sites, itching at the sites, losing my hair, etc, but I chose to stay on it because it is the lesser of the evils, so to speek. My neuro wants me on Tysabri so bad, but Im terrified of the brain infection ... He wants me to take the jc virus test, thing is, just because I test negative now, doesnt mean I will be negative if I ever do decide to try it. You can be exposed at any time. I have a friend on Gilenya, she has severe migraines that last for weeks. Her spasms are worse than before she started. From everything I have read, the new med coming out I believe this year, I could be wrong, but they have said it has the same side effects as Gilenya. If copaxone doesnt work for me, I will be done with dmd's. I'd rather suffer thru flares than be done in by a dmd thats suppose to help me.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 07-06-2012, 01:12 AM #12
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I first tried Rebif and it not only made me sick as a dog (couldn't get out of bed because of flu like symptoms but it brought on a huge depression very quickly. I only lasted 2 weeks. I switched to Copaxone and only lasted for 6 weeks. It made me feel like complete and utter crap. It was bad--missed work a bit. Then I went to Tysabri because that was the last resort. I could tolerate the side effects (minimal) and I haven't had a relapse in 4 years.

As other people have suggested it is somewhat of a crap shoot. Everyone's body is unique. You have to identify your tolerance of risk. You have to decide how important quality of is (some drugs are worse than
others). You have to decide how aggressive you would like to be in terms of treatment (personally I couldn't stomach the thought of a relapse).
If I had rested positive on the JC virus test I was planning on switching to Gilenya.

Anyhow, good luck! Some new drugs are on the horizon and will be out soon.
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Old 07-08-2012, 11:05 AM #13
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I have been on avonex for 6 years. It took like 12 weeks to get use to it. I had bad flu like symptoms. The remaining time was a crap shoot. Some weeks I was fine, some weeks I was weak and had a fever. I recently had a mri showing multiple new brain lesions and my neuro wants me to change meds. Of course because I just got the new avonex pen. It would take me several minutes some weeks to inject myself.
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