Avonex Side Effects (Page 1)

Hi my hubby has had 4 diff. Meds for his ms, he was on avenox (sp) and with that med and as all the others he is on or has been on he/you can get the flu like symptoms. Take tylenol. Or ask your doctor what you can get perscribed. I know my hubby had meds to help with that. It's like a high fever, and like body achy. But other than that and the sore sopts all the injections leave. Hope all went/goes well with you.

I take avonex and I am starting mine back this week....The side effects were hard for me...But w/time it did get better and it helped a lot! You have your basic flu like stuff and weakness...It's not a lot of fun..But keep your head up!! I took 2-3 tylenol an hr before and right after and it helped a lot!!

Have you tried flavay or flavay plus, their are a lot of people that use it instead of avonex and like it better.
Sincerely,
sandy

What the heck is flavay, i've never heard of it.

Has anyone heard of avonex reducing the number of lesions which appear on the mri? I was reading in my avonex book and they almost made it sound like some people have a reduction of lesions.

Lastly, has anyone experienced what I can only call muscle sensitivity several days after taking avonex? I'm not talking about the flu like symptoms, this happens about three days after I inject myself. Everytime I get what I guess I would call muscle over sensitivity, I skip a shot, no muscle issues. ???

Have had 2 shots and both times had what felt like strained or torn muscle in that leg and makes walking harder. . Each time did not kick in til 3/4 days after shot. Incredibly uncomfotable maybe the autoinject device causing trauma? I'm a nurse and a diabetic so am going to give further shots manually and see if that helps. Will post if it does, might help for others

Hello everyone. This is my first post as I just found this website tonight.



I have been having muscle stiffness and spasms in my neck and shoulders after injecting. Lasting two to three days. Sometimes the tension is so bad I get a migraine. I have been on avonex since september and these side effects just started about three months ago.

The flu symptoms aren't bad at all as long as I take tylenol.



Please let me know if anyone has had these same side effects. This week's has been the worst for me yet. Can't hardly type to send this post.


:(

Hi,
yea im new to this site, but quite familiar w/m.S., dx'd 23 yrs ago. Way back then I was dx'd w/benign form, which really wasn't the fact. The Dr.S were not aware, and now for years they realize it actually was the m.S. Eating away at the silent part of the brain.... Thank god we do have a useless portion of our brains, lol.
I am also stricken w/narc. & actually it has been more of a massive strike in my life! But for now I wanted to share the avonex exp. I have had.
3 years ago the neuro,(original) I have had all these years, popped the question, a re you ready for one of the a.B.C. Drugs?
My face sunk in and reality had come to bare. Yes fatigue, pain, etc. Had worsened, now here i'm not going to just take my narcotics, etc. For sympoms, this was the big unlit bend in the road ahead of me. I now am so grateful, 3 yrs later, no new lesions, and the neuro allowed me to take one small steroid prior to inj. And I sware no flue sympmtoms. I asked him a few months later, why doesnt all Dr.S tell their patients this steroid tip, he replied, ginny piggin. I happily told him "gratitude to him."
he replied no need to suffer!" he smiled. Now and then I feel a little chill the following a.M., but by noon a-okay..
Please ask your neuro, for .4 mg predlisones, explain, and you won't dread the shot lol.. But I stay up at least two hours after inject., I think that helps, only time I felt really bad was when I did it and straight to bed after. We are all different, but if u hate aches has bas as I do, worth a shot. Good luck, and god bless, txgal47 (robin)

When you administer the Steroid was it oral or an injextion? Do you know if this would even make a difference on how you get the Steroid? Thanks, GLAD THIS WORKED FORE YOU!!! My best to you...

Well, it's been about eight months since my last post and I am still having major problems after my injection of Avonex. Muscle spasms, neck stiffness, headaches that many times turn to migraines.

Talked with my doctor recently and I suggested trying taking the injection every other week instead of weekly. He agreed that I could try it and see but said I may have to try some other kind of medicine. I don't know what other medicines there are that are any different. I tried Rebif when I first starting interferon therapy but had severe site reactions and so the doc switched me to Avonex. Been on Avonex about a year-and-a-half now.

Anyway, we'll see how I do.

I was on copaxone for about 2yrs and was fine up until the last 4 months I was having what doctors call ms hugs and mine were a little bit more severe then others. I would throw up get dizzy and my whole insides were constricting and it lasted like 15minutes and it happened right after each shot. Prior to copaxone I was on betaseron and the flue like symptoms would last until it was time to take the shot again. I recently started avonex and am on my 3rd week. Flu like symptoms are kicking my butt!!Although copaxone started hitting me the last few months, while it was working I loved it you may want to try that. My mom has been diagnosed for 20yrs and has been on copaxone and is doing wonderful. My sister, who also has MS has been diagnosed for 30yrs and is doing well on copaxone as well. I guess I was the odd ball of the bunch.

wondering how your shot went and are the side effects bad for you ?

I am starting avonex in about two wks - I'm pretty bummed about it.

I have been dx'd w/ MS for 24 yrs....been free of flares for 15 yrs, so I thought I was one of the ones that wouldn't have to deal w/ the med's.

3 wks ago I had my first flare in 15 yrs, and the doctor wants me to go on avonex. I'm sort of afraid not to.

By the way, if anyone is interested in knowing more about The MS Diet Book by Roy Swank you should google it or email me. Since I started adhearing to this diet (low saturated fat diet) about 20 yrs ago, I was MS Flare free until 3 wks ago. I don't think it works for everyone, but it really worked for me.

God's Peace to everyone

jaggirl

Not sure if you will check back but yes I am having extream muscle tenseness after avonex. My wife is giving me frequent neck massages and that helps, she says that i am so tight it is hard to tell the bone from the muscle. Not sure though it has been crazy hot here the last couple weeks which also coincides with the beginning of the tense sore muscles so it may be a heat response. I will be calling my neuro Tuesday to check on it because after 3 weeks now I just cannot take it any more. It's actually been hard for me to sleep at night because I am so tense.

Hi everyone, I am new to this and was just wanting to know if any one has the dry mouth thing along with the flu like smptoms? I have been on avonex for about a month and a half and when i take the shot the next day i am just wiped out. I feel like I have no energy. It seems like it takes too much effort to move or even breath/ After that i ususally am fine but I have the dry mouth thing going on and it is driving me nuts. I am 58 years old and just diagnosed about 2months ago for real. the first lumbar puncture 3 years ago came back neg but the mri showed lesions. THIS year the lumbar finally showed MS in the spinal fluid so have firm diagnosis. I really hate the feeling i get after the shot.

Hi

This is my first time here but I do want to warn and help anyone starting on Avonex. Start slowly I mean do not inject the whole amount start at .25 and increase a little every week. Unfortanetly my doctor never said anythin about doing this so the first time my mon injected me that night I was shaking so hard and chattering my teeth I thought I was going to break something! Then I had no strength to move and the headache I thought my brain was going to explode. My mom who is a nurse decided to cut back and start from the beg. boy what a difference. Also for those of you who hate needles and shots (which I am at the top of that list!) there is a cream whivh is lidocaine and prilocaine which will numb the are and make the shot a little less painful, I hope my thoughts here have some one out there dealing with this lousy disease!!!

Hi

I was originally taking Copaxone, but I got really tired of giving myself a shot everyday. Plus the Auto Injector pushed the needle in so hard that it hurt most of the time and the Copaxone itself burns!

So I started Avonex 2 1/4 months ago. What a difference! I only have to do it once a week, the needle I use doesn't hurt and the Avonex doesn't burn! But the side effects really do suck for me.

If you are thinking about switching to Avonex I highly recommend it.

These are my tips:

1. Ask your doctor to give you a prescription for a box of Latex Free Insulin Syringes that are 25 Gauge and 1 inch in length. You are just going to use the needle and not the syringe. Just throw the syringe in the trash. It's a bigger gauge needle, which means its thinner and 1/4 inch shorter than the needles supplied by Avonex. It's like a hot knife going through butter. You will not feel the needle.

2. Use Aleve! Take two just before you give yourself a shot and then take one 8 hours later not to exceed 3 in a 24 hour period.

3. Start slow! Your first two doses should be 1/4 doses. Your next two should be 1/2 doses and then the next two should be 3/4 doses. So, before you take your first full dose you should have already injected yourself six times.

4. Ask your doctor for a prescription of Hydrocodone/APAP 5MG/500MG Tabs (Vicadin). Trust me, by this time you will be injecting yourself with your first full dose and if you thought the side effects were bad after the first 6 shots you haven't seen nothing yet!

Your two Aleve that you took just before you give yourself a shot of your first full dose will last about 6-8 hours. After that you will be in a lot of pain! But it's manageable. That's were the Vicadin comes into play. Take one Vicadin and one more Aleve.

The key is to give yourself your shots just before you go to bed so you can sleep through the night and not on work days! After your first full dose you will probably wake up about 6 hours after injecting yourself from the beginning stages of discomfort. This is time to take the Vicadin and one more Aleve so you can go back to sleep. Pain management is key.

I hope this helps all of you.

Just in case anyone is looking for someone else who has certain side effects so they know that they are not alone, I get tremors in the middle of the night, chills and sweats and about eight hours after the injection I get a headache that could kill a large horse. I haven't ever been told that I have had a migrane but I'm sure that this is pretty close. Excedrin (spell?) helps alot.

I'm on shot #9 now and it doesn't seem to be getting better and slightly worse but i found that the more hydrated I am the better off I feel. Also when I'm super achy in the morning I treat it like cramps or a hangover. It doesn't help me to stay in bed. I get up and take a walk or clean or do something to keep my muscles moving. Hope this helps.

Hydration is CRITICAL the day of the shot! My hubby takes Avonex- used to have Terrible headaches in the night and the day after-we started hydration and its resolved. He takes 3 Alieve at 6 pm, gets his shot at 7 pm, then takes 2 more Alieve and 2 Benedryl and goes to sleep.In the morning- he drinks a cup of strong coffee and 2 more Alive, and he is fine for a week.

I've been on Avonex for about two years +, and have noticed some very strange facts regarding the side effects. Sometimes, I have no side effects at all. Sometimes I get very sick with chills and aches. It almost seems like the worse my MS is, the less symptomatic I get from the shots, and vice versa. Also, I've had some horrible tendonitis in my hands that comes and goes ever since I've started this drug. anyone else?

I am new to the forum and am pretty sure that I posted my question in the wrong spot so here goes...again.
Has anyone heard of Avonex causing migraines? I used to get the horrible flu-like symptoms after my shot and a migraine on top of it. Since then my doc prescribed Naprolen to take before my shot and it's a miracle - no more flu stuff. However, I started getting headaches daily and they are now getting worse and not going away. My doc took me off Avonex today as he thinks that it's probably causing all the headaches and maybe my thyroid issue too. I've not read anything about this so was looking for input. Thanks!

Nope haven't heard of migranes but would not suprise me. Thyroid seems unlikely.

I have had the flu like, weakness and tenseness. Just generaly feal like crap the next day. Often I do have a headache the next morning. I think that Avonex does dehydrate you cause the next day feels a bit like a hangover headache. Also my wife got a script for 600mg ibuprofin. (3 advil) I pop one of those before the shot and first thing on waking in the morning. 4 hours later I pop one more and by the time that wears off I am mostly back to normal.

Just recently started on balcofen for spasms and it seems to help make the injection site less sore (relax the muscle) My only complaint is I have had 2 relapses since starting and that is about the same rate as pre-avonex so starting to think it's not working so well. Got a neuro appt in a couple weeks and will ask about that.

I did Avonex for 9 months and recently switched to copaxone because of the side effects. I was doing well disease wise on the avonex. I had one major lesion disappear , one new one though. I am really not happy with copaxone though, the injection site sreactions are terrible. I think I would prefer the avonex flu like symptoms. I am going to be talking to my neuro about it.

How can one stop the muscle spasms? The other side effects are almost bearable but the tension caused by the neck/head spasms are horrid. Enough to make me avoid/postpone my next injection. Any advice?

I had my 1st injection last Friday (5:00 pm). Took 2 Aleve couple of hours b/f shot, was kinda tired that evening......then BAM just b/f midnight I had uncontrollable tremors, and chills. Layered the covers on, no help.....decided to go take a bath. This hot bath relieved the tremors, and chills. Layed in the bath for about 30 minutes until I got nauseted. Out of the bath I went throwing up. Layed in bed, then suddenly I could not swallow or talk. Hubby paniced, got me something cold to drink.....and once that cold sprite hit my mouth the "normal" swallowing occured. Then the tremors revisited with a vengiance. Luckily they finally cesed and I think I had fever on/off for the next 4 hours. About 4:00 in the moning, I was able to go to sleep. Pretty mich just hung out lazily around the house on Sat.