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Old 10-11-2009, 09:59 AM #1
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Default I swear the Avonex is making it worse.

I said this about Copaxone once too and they didn't believe me until we did another MRI and I was right. The numbness/ hypersensitivity, the mood swings, night sweats, balance issues... I missed a dose last week, all of sx started improving... Did my shot yesterday and all of them are getting worse.

Is it possible for the treatment to be worse than the disease?? Oh and I forgot to mention the bruising... My arms and legs are covered with bruises and I have no idea where they came from. Something tells me we will be doing another couple hours in the tube when I follow up on the 19th.
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Old 10-11-2009, 10:41 AM #2
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I had a similar problem with Rebif ~ felt SO much better once I quit it. Went to Copaxone & didn't have that problem, but then C wasn't doing anything positive, either. I'm on Ty now & so far it's a success (fingers crossed). Hope they find something that works for you instead of against you. It's all a crapshoot, cuz they don't really even know why any of these work, much less why they don't...
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Old 10-11-2009, 11:04 AM #3
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I am glad to hear the Ty is working for you! She has already decided we will most likely be switching to ty after the Avonex but she wanted me on the Av. for 6 months first. Its been 2 months and I am ready to throw in the towel on this one. But like everyone else, I have heard a lot of good things about ty....I have also heard a lot of bad things, so I am a little reluctant.
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Old 10-11-2009, 01:09 PM #4
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I did ok with Avonex but not so much with Rebif. It caused very bad depression and anxiety.

Tell the doctor what you just wrote. If it's making things worse, why suffer for six months? That doesn't make sense to me.

I just read somewhere that if you're in an active flare, you shouldn't start Tysabri, that it can make things worse.

Have they mentioned Novantrone followed by Copaxone? I think that has shown good results with people with particularly aggressive MS.

Feel better soon.
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Old 10-11-2009, 02:54 PM #5
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No, she didn't say anything with the novantrone. The funny part is I didn't really have any bad reactions to the C, aside from itchy spots where I did my injections. Aside from that it didn't make me sick or anything but my symptoms kept ketting worse and worse and I kept getting new ones. The A kicks me pretty hard every week, I know the flu like sx aren't as bad, i have learned to do the shot during the day and tylenol/ benedryl every 4 hours for 24 hours, it pretty much stops the flu like stuff. But the rest of it is killing me. And the fatigue is unreal lately. I don't know if it is everything else my body has been through or the change in seasons, but I am useless all day. I cannot seem to get off of my sofa other than to go take a nap. It'll be ok though just a couple more days and I can talk to the neuro.
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Old 10-11-2009, 03:31 PM #6
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I hated when I was on Avonex...yuck, poohy, spit..

Good luck with the TY..
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Old 10-11-2009, 03:43 PM #7
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I felt absolutely horrible on Avonex. I could only stick with it for 9 weeks. I got progressively worse on the stuff. Neuro wouldn't prescribe any interferons for me after that. I did stick with Ty for 10 months but my sx didn't get better and it gave me severe headaches. I really hope Ty helps you. I know of quite few people who have done very well on it .

I wish they'd find a dam cure already or at least a med that didn't have horrible side effects. Sigh. I'm on LDN right now. It isn't helping or hurting me so i'm not even sure why I bother.
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Old 10-12-2009, 11:43 AM #8
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I did terrible with the Rebif. When taking it the symptoms felt
worse. When I finally quit I felt better.

Now with the LDN I am doing so much better.

Good luck with the ty.


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Old 10-18-2009, 07:41 PM #9
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It is very possible for the treatment to be worse than the disease. I was on Avonex for 2-1/2 years and my symptoms kept getting progressively worse. Right before I stopped taking it, I could barely walk across the room and was in constant pain. I described it as my joints and muscles felt like they were on fire and melting. I skipped a shot and my symptoms started improving so I never looked back. That was in 2004 and my RRMS has been relatively stable.
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