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Old 08-12-2005, 07:04 AM   #1
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Stopping Avonex, thoughts please...

Hello everyone, I'm still new to this board after finally discovering it, (Been at two others which seemed very inactive); thanks and good luck to everyone here.

So here's my story as quick as I can tell it. First attack was Dec 29, ended up in hospital for a week because it was very severe. Put on Tysabri which unfortunately lasted only two months, little over a month later went on Avonex. That was mid to late April.

About a month later I started noticing a wierd effect. Between two and three days after giving myself the injection I would start having muscle sensitivity. The best way I can describe it is an overwhelming need to stretch the muscle if only for a couple of seconds. Sometimes in my legs, sometimes in my arms, it can change from minute to minute. Effect lasts from a minute to a couple of hours.

At first I thought this has got to be the MS, but over time I noticed it followed the pattern of my injections. I now find that I also become very frightened when this happens, can't sleep, but still feel pretty good the next day.

Has anyone else had this problem? Anyone else ever heard of this? Had my latest MRI last week, no new leasions so either the Avonex is working or my MS is in remission on it's own. (At least that is what the doctor said) Never-the-less, as others have stated I feel the shots are really hurting me and beginning to drag me down. I hope someone will take a moment to chime in here and tell me if I'm crazy, or my thought pattern is sound.

As a side note, I've a total of a little over five leasions showing on the MRI. Does anyone have an opinion is this a small amount, an average amount, or a large amount?

Thanks again, I'm glad I've found this resource.

Last edited by evolution88; 08-12-2005 at 07:07 AM.

 
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Old 08-12-2005, 07:45 AM   #2
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Re: Stopping Avonex, thoughts please...

Has the nurse from Biogen offered any advice? You should be getting a call from someone every 6 weeks or so to check on your progress. At least that was "the drill" when I was on Avonex...

There's a hotline number somewhere in your literature. This is NOT a normal reaction, as far as I know.

Last edited by Lisa_P; 08-12-2005 at 07:46 AM.

 
Old 08-12-2005, 08:42 AM   #3
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Re: Stopping Avonex, thoughts please...

Yes, I would call the drug company or insist that your doctor tests your blood for liver toxicity (causes muscle cramping) which can be a problem with meds.

 
Old 08-12-2005, 09:21 AM   #4
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Re: Stopping Avonex, thoughts please...

Wow, evolution88, thanks for posting. I am stuck in “probable MS limbo,” so I am not on any of the drugs yet. Your symptoms do seem to be in the same cycle as your shots. It may be a well-known side effect that can be treated easily. Have you told your doctor yet? I have wondered if I would stop the drugs if they became too much of a problem, and I can see that you are weighing that, too. Perhaps if you approached this problem like a side effect that might have a simple resolution, and take things from there? Does that make any sense?

You are right. This HealthBoards.com’s MS forum is really the greatest! There are always sympathetic people right here to help you talk or think things through.

I wuv us!

 
Old 08-12-2005, 09:26 AM   #5
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Re: Stopping Avonex, thoughts please...

Evolution....I use Avonex too. And that "need to stretch" is typical of the med. It's a side-effect. I have found it to be harmless and the stretching - for me, anyway - feels WONDERFUL! Anyhow, talk to your neuro or call your local MS Society and ask if they have a brochure that shows all of the CRAB meds side by side with injection schedules and side effects. That will help you better understand what is happening.

 
Old 08-12-2005, 09:33 AM   #6
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Re: Stopping Avonex, thoughts please...

What does CRAB mean?

 
Old 08-12-2005, 09:43 AM   #7
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Re: Stopping Avonex, thoughts please...

It's short for all the MS drugs in the Western medicine marketplace: Copaxone, Rebif, Avonex, Beta Seron= CRAB

 
Old 08-12-2005, 01:07 PM   #8
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Re: Stopping Avonex, thoughts please...

I mentioned it to my Neuro on my last visit, but probably didn't say it stressful enough. I was just so darn happy to hear there were no new lesions I think I decided to keep trying to use Avonex. Anyway, he kinda just brushed it off, but again, I probably should have been more forceful.

So here we are today, the day after three days after my shot. FEEL GREAT. Last night, felt like hell. Really strange.

I'll look into the liver toxicity thing.

Thanks everyone.

 
Old 08-12-2005, 01:30 PM   #9
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Re: Stopping Avonex, thoughts please...

Does anyone else on Avonex itch? I can scratch my legs endlessly. I don't know if it from the Avonex or not.

 
Old 08-12-2005, 03:59 PM   #10
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Re: Stopping Avonex, thoughts please...

JulieDe -I had obnoxious itching before Avonex. I understand it is directly related to what the MS is doing to the nerves...? Almost every night when I get in bed, and only when I lie down, my CHEST itches!! Crazy!

 
Old 08-12-2005, 04:45 PM   #11
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Re: Stopping Avonex, thoughts please...

evolution88,
i wondered/wonder about leasion load also, but it comes down to where they hit and take action, (so im told)
i have too many lesions to count, with mild symptoms (knock on wood) of numbing, lhermittes (subsided), (dont want to say that too loud).lol
my last mri (july) was minimal difference from 6 months prior, i have ~5 active lesions
starting avonex monday, (wish me luck)
hope that helps
take care
tammy

 
Old 08-12-2005, 06:19 PM   #12
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Re: Stopping Avonex, thoughts please...

I am so sorry you are having these troubles. But I am so happy you posted this. I have been on Avonex since May and have been considering stopping. I skipped my injection this week, just so I could remember what it feels like to not have the damn flu!!! They only issue I have had is ON, and about 5 lessions. I don't have any other symptoms (knock on wood). I plan to schedule an appointment next week to discuss my thoughts further with my neurologist, but it is such a challenge for me to function the 2-3 days a week after my injection. I will post again after my visit and let everone know what information I am able to obtain from my neuro. I hope you are able to find a comfort zone!!

 
Old 08-13-2005, 09:36 AM   #13
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Re: Stopping Avonex, thoughts please...

Quote:
Originally Posted by evolution88
Hello everyone, I'm still new to this board after finally discovering it, (Been at two others which seemed very inactive); thanks and good luck to everyone here.

So here's my story as quick as I can tell it. First attack was Dec 29, ended up in hospital for a week because it was very severe. Put on Tysabri which unfortunately lasted only two months, little over a month later went on Avonex. That was mid to late April.

About a month later I started noticing a wierd effect. Between two and three days after giving myself the injection I would start having muscle sensitivity. The best way I can describe it is an overwhelming need to stretch the muscle if only for a couple of seconds. Sometimes in my legs, sometimes in my arms, it can change from minute to minute. Effect lasts from a minute to a couple of hours.

At first I thought this has got to be the MS, but over time I noticed it followed the pattern of my injections. I now find that I also become very frightened when this happens, can't sleep, but still feel pretty good the next day.

Has anyone else had this problem? Anyone else ever heard of this? Had my latest MRI last week, no new leasions so either the Avonex is working or my MS is in remission on it's own. (At least that is what the doctor said) Never-the-less, as others have stated I feel the shots are really hurting me and beginning to drag me down. I hope someone will take a moment to chime in here and tell me if I'm crazy, or my thought pattern is sound.

As a side note, I've a total of a little over five leasions showing on the MRI. Does anyone have an opinion is this a small amount, an average amount, or a large amount?

Thanks again, I'm glad I've found this resource.
I was on Avonex for a year and a half. The patterens you are following after your injections are real. Mine got worse as I went along. It was time for me to go to the Nuero so we discussed it. He examed me, and I had been having this on and off rash. My skin seemed to be breaking down , not just on my face but everywhere. Not awful but enough to know something was up. I was told that I was allergic to the Avonex. I went off of it and within a month I was back to me again. I have been dxed with MS for 30yrs now. I have treated my MS very conservitivly. Not jumping to everything out there for MS. My journey with Avonex was enough for me. I now feel like I will wait in the wings for a cure. Til then I will remain praying. Thanks for sharing this with us, I thought I was alone.

 
Old 08-13-2005, 10:08 AM   #14
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Re: Stopping Avonex, thoughts please...

Pru and everyone else,
Thanks for the replies. One if the best parts of this board is that you find people with like experiences, it's nice to hear..."You're not crazy, been there, it can get better."

 
Old 08-13-2005, 10:20 AM   #15
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Re: Stopping Avonex, thoughts please...

Quote:
Originally Posted by evolution88
..."You're not crazy, been there, it can get better."
Well, I'm a little bit crazy... But, I have been there, and it DOES get better. I stopped Avonex myself, and switched to Copaxone. I prefer it a million times over Avonex. Yes, it's once a day, but the needle is teeny weeny, and there are NO side effects.

 
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