I was dx'd two days before chiristmas and I've been on avonex since January of this year. I do not get my shot every week, mainly because the side effects I get can only be described as "pure hell". Chills, tremors, muscle oversensitivity, aches like someone is drilling holes into my bones, and my muscles ache so much a simple hug from my children brings me to tears. A few weeks ago I had thought that a nice hot shower may help the muscle aches, but it only took about 10 seconds in the shower for me to get out because it felt like someone was stabbing me with a bunch of little knives.

Well, lately I have been having blackouts, i'll be out for a minute or so, then wake up, not know where i am, what i'm doing, ect. My family says it's because i'm missing my injections. So, my mother and husband have now decided that I cannot be trusted to make my own medical decisions regarding this and are now MAKING me take it every week. Now that's fine and good, whatever, I know deep down they're only concern is me, but I have 2 small children, they need mom, not 5 or 6 days a week, but ALL week. My husband sees how bad i feel, but does not hesitate to still ask "honey, what are you making for dinner" or "can you get me a beer?" while i'm curled up in a fetal position, shaking uncontrollably, buried in a mound of blankets.

I just don't know what is worse. With the ms, I'm exhausted all the time, no matter what, the doc gave me provigil, but it doesn't work. With the avonex, i feel like hell and am still exahusted. Any words of advice?

I just took my 6th shot of avonex. I've basically gotten used to the flu side effects and they have gotten better with time. But as someone else mentioned in this thread, I have a strange muscle soreness, fatigue and just generally feeling crappy for a few days after each shot. I also have noticed very strange abdominal problems since I started the meds. without giving TMI, I have what feels like a very minor stomach flu for a few days after the shots, lots of stomach pain, etc. Anyone else experiencing these side effects?

I started my injections (.50) 3 weeks ago and have been able to manage the side effects so far. They can be wicked, so I would advise anyone to make sure you drink lots of water during the day and MAKE SURE YOU TAKE ALEVE!!!!! It really helps me. I take 2 of them just before the injection and then take another one about 5 hours later because the Aleve wears off at about the 5 hr mark.

When I do sustain the full brunt of the side effects (when the Aleve wears off), I take a hot shower. That seems to slow the brutal chills and dull the headache. Other than those, I don't seem to get any other effects. I am wondering if it initially triggers some of my ms symptoms because right afterward, I seem to get a small burst of my ms symptoms. It then goes away within an hour or so.

Good luck to you

I have read all the above posts from other people and I am very sorry to hear all the terrible side affects they get from Avonex. I only once in a great while get a fever in the middle of the night but 2 tylenol take it right away. So far so good for me. My mother on the other hand also has ms and has had it for over 20 years but really been diagnosed for about 4-5 years and ever since she started avonex 3 years ago she has only gotten worse. She insists that its the avonex that made her worse because well before she went on it she was fine. Now she is at the point where she has to use a cane to walk and can't even drive. Does anyone feel this way about avonex? If so, this is not something I want to be on.

I just discovered this site and felt compelled to post. I was diagnosed with MS 8 years ago and went on Avonex within the first 3 months of my diagnosis.

The first injection was rough and it took me about 6 more months to get up the nerve to inject myself. I made an immature decision to go off the medication for about a year and a half and I ended up having a minor relapse in the form of optic neuritis about three years ago. I went back on Avonex at that time and I have been on it ever since.

I have taken breaks (e.g. when I travel) but I have found Avonex to be manageable. I have only experienced the flu-like symptoms and I tend to be a bit "hung over" the day after, but that's it. Once in a while, I have difficulty sleeping but I can't be certain that is definitely Avonex related.

I have fallen into a medicine routine. On Sunday, I clean my apartment, change the sheets on my bed, eat a nice dinner, take the medicine and eat some ice cream, brush my teeth, and go to bed. It's small, but it makes me happy to "treat" myself.

It totally stinks to have this disease and to have to take this drug, but it's worth it. Recently, I had my first relapse since my diagnosis. I was in the hospital for 5 days while I received IV steroid treatment. That was way worse than a once-a-week injection.

At the end of the day, I am happy that there is something that we can use to treat this disease. Let's hope for a cure.

I have read many of the posts here and truly feel for many of you. My wife was recently DX'd and we started her on Avonex immediately. The Dr. says to take 600mg motrin 2h before and 2h after the shot, take 650mg tylenol at the time of the shot. Sometimes she has some pretty bad symptoms, though most not as bad as some I have read here. Sometimes, though, she is just a little tired, weak and achy. Right now we are dealing with severe muscle soreness at the site of the shot. Does anyone have any idea how to relieve this? Any advice would be appreciated. Hopefully our Dr's regimen described earlier might be the key to relief for some of you! Thanks and God Bless!!

Hi isjackdull,
Sorry to learn of your wife's recent MS diagnosis. It sounds as though you are dealing with the situation well.
My neurologist who initially prescribed Avonex for me when it first came on the market in '97 suggested I take Tylenol PM a couple hours before the shot. I tend to sleep through the side effects. If I wake up with chills and aches, Excedrin seems to help take care of those issues quickly.
May I ask where your wife is injecting the Avonex? For the past 12 yeas, I've only injected in the tops of my legs-alternating between legs each week. While I do have some residual redness and a bit of discoloration; there isn't a trouble of muscle soreness. It's a natural reaction to tense up when the needle is about to be inserted but to relax the muscle as much as possible really does make the injection less painful and could possibly help with residual injection site trauma.
For me, beginning Avonex treatment in '97 has been a wonderful option for me since prior to that, as I was taking monthly IVs of solumedrol. Talk about some major side-effects...

I do hope your wife will find something that will help reduce her discomfort with the muscle soreness. Think about trying new sites and any muscle relaxing tricks - who knows, the benedryl in the Tylenol PM makes me pretty woozy and might be helping me relax the muscles prior to injecting.

Take care!

I've been on Avonex since 2002.

Here are some things that I do before my injection:
a) I take five ibuprofren (200mg per tablet) about 30 minutes before the injection.
b) I take that shot about 10 minutes before I go to bed. This way, I sleep through the worst of the initial side effects.
c) When I wake up, I drink a large glass of water and take another 1000mg of ibuprofen.

If I don't take the ibuprofren and I don't sleep right after the shot, I have a terrible fever and I shiver uncontrollably. It's so bad that I can barely walk. However, if I take the ibuprofen, I'm almost always fine.

When I first started getting the injection I had trouble with the process. I was afraid of the needle, so I would ice the area until it was numb. That made me feel better about doing it, but I've found since then, that if you simply do the injection properly, you shouldn't really feel anything.

To sum up, I think the smartest thing you can do when taking Avonex is to time your injection for bedtime. Perhaps a Friday night at 11pm so that you can recover on Saturday if you have any adverse reactions. Be sure to take those ibuprofen doses!

I've been on Avonex for over a year now and I recommend doing a few leg stretches or squats, if you will, after the shot to help with the muscle soreness... even a brisk walk tends to help the muscle. Also, the more relaxed your leg is helps... try resting your ankle on the other ankle and make your muscles loose before injecting... it's almost an art, but it does help.

I am a 59 year old female who turns 60 in a couple of months. I am seriously thinking of ending my Avonex injections. I am reacting more often and taking longer
to rebound (2 days instead of 1). My neuro says this happens when you get older.
She said that she has not seen MS progress much past the age of 60, at least in her
practice. I have been on Avonex 7 or 8 years and still react 95 % of the time. I would like to know if there are any other brave ones out there who quit Avonex and
just how they are getting along. I have talked to two MS specialists, and they seem
to think it is worth a try.

Hi everyone,
I have a quick question about injection problems with Avonex.My sister has been using it for the past 2.5 years and recently she constantly has pain in the site of the injections (which is usually her buttocks), there seems to be hardening of a little bit of tissue around the injection site. does anyone of you that is using avonex for prolonged time has this issue?

God bless all of you.
Maggie

I started Avonex in May after being diagnosed with MS at age 56. I have been misdiagnosed for years and feel sure the MS has been the cause of all the strange problems since I was very young. I weigh less than 110# and was warned by my neuro that the patients he had who had the worst problems with side effects were the skinny women like me. I was dreading it. My husband and I have a special prayer we do before he gives me the injection. I had no side effects the first time--I had those horrible shaking chills for 3 hours the 2nd time and again for 30 mins the 3rd time. The only side effect I am having now is the feeling of extreme fatigue. I agree that it is better to titrate the dose. You have to do it yourself as the prefilled syringes only come in the one dose but the Avonex rep can tell you how. I should have done it, but when I found out how much the stuff cost--I just couldn't throw any away. I also take the Alleve when I take the shot just in case and try to stay hydrated. Also, I got a presciption for the smaller guage needles which really made a difference in injection pain.

I have been on Avonex pretty much from the beginning of my diagnosis 13 years ago. I have been very fortunate in that the worst symptom I have is fatigue. Compared to what people dealt with before the "ABC" drugs I feel great! Even completed a marathon a couple years after diagnosis. Flu like symptoms are a small price to pay for not being in a wheel chair. I will definitely take it!

The last time I had my neuro appt, I asked the nurse practioner for a RX for EMLA creme which was suggested by my sister who is a nurse. You put it on--don't rub it in--cover it with a clear dressing (I use saran wrap-cheaper) and wait about 45 min before the shot. It numbs the area for about 2 hours. I don't feel the needle and don't have any soreness afterward. Works great for the squeamish (like me) k

I had my first Avonex injection Saturday morning at 9am. It is now Monday night and am still having extreme nausea, some tremors, and eye problems (strange sensations when they are closed). I suffered terrible allergic reactions from Copaxone and the neurologist thought that trying Avonex would be a better change of pace. Will these feelings go away? I am on a script stronger than Aleve and the above symptoms have not lessened. What am I doing wrong?