Multiple Sclerosis (MS) Support Group

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Eloise 05/11/2008

I've been on Avonex for 18 months. In the past two weeks, the day following the injection I've had severe headaches--migrane proportion. I've had to take Zomig to relieve the pain and that drug puts me to sleep and totally wrecks my balance as it is so powerful. It takes the headache away, but then I have a drug hangover all day long and all I want to do is sleep. I can barely function for an entire day. Has anyone else had the horrible headache after taking Avonex? I don't understand why all of a sudden I'd experience this. Very odd. I do see my neuro. in three days so will ask him, but it is more helpful to hear from you and then tell him what all of you say. He tends to believe more in what people with MS say (due to their experience with the disease) than what the medical world says. So it would be helpful to hear from any of you who take this. I'm also afraid he may take me off the Avonex and since it seems to be helping and I thought I'd gotten past the side effects (until the last two times), I don't really want to switch. But I can't tolerate the headaches, either. Once again, I seem to be caught in the lesser of two evils thing. Sigh. Thanks for your responses.

JC1958 05/11/2008

Hi, I have been on Avonex for a little over 2 years and I have not had the headaches you speak of. That is something you really need to talk with your DR about also call Avonex's nurse line and tell them. they need to hear about such things and possibly may have some advice for you. You can get the number by going to www.avonex.com I hope you find the answer, and let us know how you make out.

JC

Eloise 05/11/2008

Thanks! I'll be telling my doctor on Weds. when I see him. I hadn't even thought of calling the Avonex nurse so I appreciate the reminder! I think I'm in an MS fog!

ezduzit 05/12/2008

Hello, I've been on Avonex for 10 years and sometimes I do tend to get migraine's and flu like symptoms about 6 hours after the injection. I've noticed that the faster the medication is injected the more symptoms I get. So I tell my co-workers when they give me the injection to slow it down, but sometimes they forget.
Good Luck to you.
Sylvia

deleted_user 05/12/2008

I have only been on Avonex for 7 months. But I am in tremendous paid & severly ill for the first 36 hours. Then about 48 hrs. after the injection I always get a migrain.

deleted_user 05/12/2008

I'm not on Avonex, I'm on Rebif, which is in the same drug family. Sometimes I get migraines, too. Have you tried Maxalt for the migraines? I love it! You take one at the onset of the headache, and another one in one hour if you're not getting relief. No side effects, and it works! Ask your neuro for sample. Also, I find if I drink a lot of water on the day of my shot, the side effects are lessened. Good luck!

deleted_user 05/12/2008

I had many of the same symptoms when I was on Avonex. Migraines and Flu. I checnged over to Copoxone and have had no problems. My Doctor thought that the 10 year studies looked better with Copoxone!

deleted_user 05/12/2008

Ya, it sound wonderful what they are willing to put you through for their profits, off our fear. I say their drugs are mostly worthless at a high cost physically to the users. You may want to explore the LDN if you have not seen that there is a group on this system here. There is also another drug SF1019 that has not been FDA approved in our fair country.

deleted_user 05/12/2008

I tried Avonex for two months--the worse two months of my life. Now I am on LDN and getting better every day. No bladder problems, getting feeling back in fingers, no night time temperature extremes, less fatigue.

Here is a website with info. I hope the link works.

http://www.freewebs.com/crystalangel6267/index.htm

deleted_user 05/12/2008

I have been on Avonex a little over 1 year and the only time I have problems with headaches and flu like symptoms especially backaches is when I don't take an Ibuprofen 1hr before injecting. I also take my shot out of the fridge atleast 4hrs before injecting. Avonex is really a good medication you should see your M.D. ASAP if you are already doing the above mentioned things. Good Luck, and feel better.

deleted_user 05/13/2008

I never had many headaches, until after I used avonex. I still get them although I've been off it for sometime now. My doc gave me midrin Capsules, they really work well when the headaches get out of hand.

deleted_user 05/13/2008

I HAVE NOT HAD THE HEADACHES BUT WHAT AVONEX DID GIVE ME WAS REALLY BAD MOOD SWINGS (RAGE). HAD 2 BE TAKEN OFF IT RIGHT AWAY.

deleted_user 05/13/2008

I took avonex for about 6 years. I had my first ever Migraine with Aura. My vision shut down to tunnel vision and I had lightning like zigzags flashing across my field of vision. I was going thru "the change" at the same time so it also chould have been caused by hormones I guess. I would also have a "regular headache" following most injectsions. I've been off avonex for about 4 years now and in retrospect it caused me a lot of problems. After 4 years of no disease modifiying drugs i'm starting copaxone today. My most recent MRI in Dec was very bad. I'm hoping for a better outcome with the copaxone.

deleted_user 05/13/2008

Imitrex with the inhaler works great for migranes. My husband never had migrannes when he was on Avonex, only regular headaches. But having had migranes in the past, I found Imitrex to work the best.

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