Discontinuing My Avonex Injections

A board to discuss the Multiple Sclerosis modifying drug Avonex

Postby forzajuve » Tue Jan 05, 2010 6:24 am

I'm on avonex... I've gone from 5 relapses a year on copaxone to 2 on avonex. I'm hoping its the new drug that is helping, becuase the flu like simptons are still here and going strong 14 months into treatment. (two days a week i'm useless)

leetz I too get the MS Hugs (i think whoever named it must not have ever felt it or had a sick sense of humor)
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Postby Mechanicallyinclined » Tue Jan 05, 2010 1:07 pm

forzajuve

I take two tylenol before the shot. If I get the chills juring the night I take one or two more. It seems to help.
I hate being on this drug , but something has kept me stable. It might be my lifestyele change.
For probably the first two years I'd get flu like symptoms. Now I just seem more achy the next day. Flu symptoms not as bad. I hate doing the inections and question them but I'm sticking with them for now. Hopefully my experience helps you out.
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Re: Avonex side effects

Postby NHE » Tue Jan 05, 2010 8:52 pm

forzajuve wrote:I'm on avonex... I've gone from 5 relapses a year on copaxone to 2 on avonex. I'm hoping its the new drug that is helping, becuase the flu like simptons are still here and going strong 14 months into treatment. (two days a week i'm useless)


Many people find ibuprofen to be more effective in counteracting Avonex's side effects than Tylenol. Have you ever tried ibuprofen? I would recommed 400 mg of ibuprofen at the time of the injection and then another 400 mg every 4 to 6 hours after that as needed.

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Postby Mechanicallyinclined » Tue Jan 05, 2010 9:04 pm

I would also agree with NHE. I've used ibuprofen also and it has done well. For me they seem to work the same, but I've heard from others that ibuprofen works better for them.
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thanks for the sugestions

Postby forzajuve » Fri Jan 08, 2010 9:16 am

thanks guys


FORZA JUVE!!!!
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Postby newfie-girl » Thu Jan 21, 2010 11:14 am

Hi, everyone this is my first post, and I would like to say thank you to you all for sharing your experiences with the drugs you have taken. I was on Avonex for 11 months, and just quit about two weeks ago. The side effects were forearm itching and rashes (both arms) it sounds silly but I have a sore nose all the time, and much depression, I have to see my neuro on Monday, and he'll probably TRY to convince to take some other type of interferon but honestly I'm scared of what they're doing to my body. I should also mention that prior to taking the Avonex, I was on Rebif for 10 years, and thats another whole story, but I just want to say that with my experience with the DMD's, Ibuprohen is the way to go to relieve aching, tenderness, pain and spactisity attacks, cause I've tried them all. Tks....Take care everyone and we can take care of each other.[/b]
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Postby civickiller » Fri Feb 05, 2010 7:27 pm

i was on avonex for 9 months, after injections, i was sick the next day for almost the entire day. if i didnt take a gabapentin, then i would not be able to sleep that night. every time i thought i was going to get a flare up, i did. just was not working. tried beta seron and i havent had a flareup since but idk if its coincidence that i start vitamins and chelation therapy at the same time, so i cant say what is working but i know it wasnt avonex
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discontinuing therapy

Postby sage39 » Tue May 18, 2010 11:33 am

This is my first post and I have been struggling with discontinuing my Avonex injections. I was diagnosed 11/03 with optic neuritis and paresthesia in my legs and a brain MRI that was consistent with MS. At the insistence of my neurologist, I began Avonex 01/04 and faithfully injected weekly until discontinuing 10/09. During these five+ years, I did not experience any exacerbations. However, I was concerned about the amount of Ibuprofen I was taking to deal with the side effects of the Avonex. This combined with not knowing how effective the drug really was, lead me to discontinue therapy. I also felt that I was spending half my week dealing with the pain associated with the medication and not the disease itself. In the meantime, I discovered my Vitamin D level was "extremely deficient" and began supplements (I take 5000 units daily). Also, I slowly became vegetarian and reduced my intake of wheat gluten and dairy. I feel "normal". No headaches, no weird pins and needles, no withdrawl from stopping the meds. It may not last forever and I will likely get worse, but I'm glad I took a break and regained my life.
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new to avonex

Postby suzypeach » Fri Jun 25, 2010 7:43 pm

i just gave myself my 10th shot. sometimes i have awful flu like side effects, other times i'm fine afterwards. this week -- something new -- i hit a vein when i gave myself the shot. it was scary, but i guess it happens. the optic neuritis hasn't gotten any better since being on avonex -- i thought (hoped) it would get better. anyone have any experience with this?
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Re: new to avonex

Postby NHE » Fri Jun 25, 2010 10:49 pm

Hi Suzy,

suzypeach wrote:i just gave myself my 10th shot. sometimes i have awful flu like side effects, other times i'm fine afterwards. this week -- something new -- i hit a vein when i gave myself the shot. it was scary, but i guess it happens. the optic neuritis hasn't gotten any better since being on avonex -- i thought (hoped) it would get better. anyone have any experience with this?


I inject over on the side of my upper thigh muscle and most of the time it dosen't bleed. You may find this post on injection locations for Avonex helpful for you. In addition, here's an older thread where I've posted a few tips on injection technique. I would be happy to try to answer any other questions that you might have.

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Postby Bella » Wed Aug 25, 2010 4:24 pm

Hello Ade .........I have to say I am following in your footsteps. I am up to 7 injections I am still getting bad side effects. I am in the struggling with the decision phase.

I agree my life is way worse on treatment. I think I am going to call this quits.

I live near Toronto so not to far from you. I also love yoga and exercising. What type of exercise do you like to do?

Bella
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Postby Courts » Sun Jul 03, 2011 4:10 pm

I'm stopping these injections! I've been on them for 8 months and still get nasty side effects and for the last 5 months have still had paroxysmal symptoms.
The way I see it, I've learnt over the last 6 years that anxiety is my trigger for relapses and these injections cause me so much anxiety that its probably undoing the 29% reduction in relapses.

I'm concerned though that I might have a relapse now that I've stopped taking it. To those of you who stopped it did you get a relapse afterward?
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Postby shaight » Sun Jul 10, 2011 6:13 am

sorry to hear of the awful side effects some of you are experiencing. personally, i would quit also and maybe try copaxone instead.

i took my 3rd full shot last evening and did not experience any side effects. i take two Aleve about a half hour before taking the shot. this seems to work for me, but i have always had a high tolerance for any type of drug that i've been prescribed in the past, so that may have some bearing on my results.

best of luck to all.
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Re: Discontinuing My Avonex Injections

Postby longtimer » Tue May 22, 2012 8:15 am

I have done the shots since I was diagnosed in 1998. I am constantly nauseous, have gone from a size 10 to an 18, have difficulty getting the needle through the skin on my legs anymore. I am seriously wanting to stop with the shots. I've gradually seen worsening of symptoms with no new exacerbations. They think my first episode was in 1978, but lasted only about a week. My right arm & hand felt like they were "asleep". I went to the Dr. & he said not to sleep with my arm under my head--it went away & I never questioned it until I had an episode of more length that started out the same way & led to my diagnosis. I'm wondering if I went 20 years between episodes before--is the med. doing anything for me or is it just in remission like the first 20 years were? Are the side effects of the medicine worth while for me. Is it actually doing any good or just harm? My husband is afraid of me quitting--but I want to try it! Has anyone else quit after such a long time of use & if so, how did it go?
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Re: Discontinuing My Avonex Injections

Postby Scott1 » Tue May 22, 2012 10:05 pm

Hi,

I haven't read this thread before but I can see everyone had the same concerns and similar experiences that I did. The only difference is I didn't gain weight because I made a very conscious effort not to.

I've had a lot of success by combining Avonex with Valtrex. This is under a post of that name on the regimen board. It may not be for you but I have been down the same path and the combination did make Avonex far more tolerable.

Good luck whatever you do.

Regards
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