New User - also new on Avonex

A board to discuss the Multiple Sclerosis modifying drug Avonex

New User - also new on Avonex

Postby mrssmurf » Tue May 18, 2004 6:59 am

Hi all,

I was diagnosed with MS in Dec. 2003, although I had been having symptoms for about 2 years prior. I am now on Avonex and have been for about 2 1/2 months. I am only on 1/2 of a shot, due to the side affects. I still have alot of side effects that seem to last 24 hours. I am very achy, get the sweats real bad and a headache. I also feel so disconnected from the world when I take this shot, that it is hard to concentrate on anything, so on that day I feel pretty useless.

How long is this suppose to go on? I am getting frustrated because I am terrified of taking the shot (husband gives it to me) and I feel so bad afterwards that it is hard to see the "good" in the shot. I am also scared about going to a full shot, if I feel this bad on 1/2 a shot.

I still have symptoms, I get tired easily and have problems with my left leg. I am in physical therapy right now, which seems to help out a little.

Does anyone have an encouraging word about staying on Avonex? I like this med because it is only an injection once a week. I am so afraid of needles that I can not even look at the package of the Avonex without getting freaked out. So I can't imagine taking more shots a week.

HELP!! Feeling lost and frustrated!

Mrssmurf
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Postby Shayk » Wed May 19, 2004 5:38 pm

Mssmurf

Welcome to This is MS. I was diagnosed in October 03 and am into my 5th month on Avonex. I can honestly say that the side effects have lessened considerably. :)

I started at the full dose and if I remember correctly (no guarantees there :lol: ), it took me about a month before I could sleep through the night without waking up to take more ibuprofen.

Of course, it took me 3 weeks to figure out that I should put the ibuprofen on the night stand so I wouldn't have to get out of bed to take them. :roll:

They're not beside the bed anymore. If I would quit hitting veins, I don't think I'd have any side effects at all at this point.

Lucky for me I guess I'm not that fearful of needles, or, at least I play enough mind games to "dart" it in. If I think about it too much it's really hard. I'm trying to "just do it".

Unfortunately, I don't think there's a good way to tell if it is actually helping. We have to trust the data (not always easy either) that it modestly decreases the number of relapses and delays disability.

Good luck to you. Let us know how you're doing.

Sharon
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Postby jd » Tue May 25, 2004 12:53 am

Dear MrsSmurff

I have been on Avonex for 4 weeks and have been very lucky in having no side effects. I know this is not too helpful for me to tell you at this time but my experience so far has been very good. Ihad a check up at the hospital yesterday and they said I am being very fortunate but for those who do get side effects they lessen considerably as time goes on. Keep in there - I'll be thinking of you here in UK. I'm sure it will get better for you. You sound as if you have a wonderful hubby! My husband dosn't give me the injection, but he sits with me and gives encoragement - we all need that so badly with this illness! Tell him well done from me please.

Take care - lots of best wishes from Southampton, UK.

Jady.
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Postby willysnout1 » Tue May 25, 2004 11:30 am

mrssmurf, every now and then I hear about someone who just can't tolerate interferon due to the side effects. Avonex is the easiest of the interferons from everything I've ever heard or read, so maybe you are one of those people. When I started on the drug a couple years ago it took a couple of months before the side effects began to subside. Then they subsided pretty rapidly and eventually plateaued at a tolerable level.

My 2 cents worth is hang in there. I also would just bite the bullet and do the whole shot rather than the half shot. A couple of tips. One is to do your shot in the evening a few hours before bedtime; don't do it during the day, and be sure that the day after the shot is a day off of work. (Many people inject Avonex on Friday or Saturday night.) Take a few aspirin about an hour beforehand. If your stomach is sensitive, use enteric-coated aspirin. I think aspirin is a better pain reliever and fever reducer than anything else out there, and unlike the non-aspirins there is no additional risk of liver damage.

Take your shot and stay up for a few hours. Just before you go to bed, take a few more aspirin. If you need to, take a few more in the middle of the night. (Note: It's hard to O.D. on aspirin, so don't worry about taking three at a time rather than two.) Then take a few more when you wake up. Also, be as sedentary as possible before taking the shot and after you take it. I find that moving around tends to get the blood moving in my muscles and intensifies the side effects. So be a couch potato on shot night! :) And note that this is another reason not to do the shot during the day. You don't want to be moving around before or after your shot.

If none of those techniques work and you're still having the same problems after six months or so, then if it were me I'd switch to Copaxone.
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Postby Debefree » Thu Jun 03, 2004 7:23 am

8O This is the forum for me. I am starting Avonex shortly (after taking drug class!) and after reading lots about it am convinced this is the med for me.

I also plan on doing the shot as soon as I hit the door after work on friday, vegging on the sofa until 9 pm and going to bed directly.

My doctor says we are starting with a 1/4 of the dose and it should eliminate the side effects.

I usually do the treadmill for a mile after work and first thing in the a.m. so I will stay off on treatment night and the next morning stay low.

I was wondering if anyone else started on the 1/4 dose. At $1100 a month it is scary to dump out that much med. The Nurse says she will teach me how to "waste" the medicine. Obviously you dont give yourself 1/4 and "save" it for next week and reuse the syringe!!! :wink:

PEACE!
Debe
dx 04/04 RRMS
Avonex 6/04-1/06
Rebif 1/06
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Postby Shayk » Thu Jun 03, 2004 6:08 pm

Hi Debe

Just want to say good luck! I actually exercised before my first shot (and every one subsequently) to try and decrease my stress and anxiety about it and to get the muscles relaxed.

I have no idea if the exercise is recommended though. I started full throttle with the Avonex. You never know, you might be just fine on Saturday.

I had a relatively good Saturday last week, so I can say if you do experience any side effects, they should definitely subside.

Be sure to let us know. I also think it's great you're doing the exercise.

Sharon
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Postby Debefree » Wed Jun 09, 2004 6:17 am

Hi ALL..my drug school went well. The Nurse was very nice. We played with the 1.5 in needles and decided my fat layer on my legs was not a real problem, and she gave me a bunch of smaller 1 in needles. I guess you need the long needles to get well into the muscle.

I had a very very physically active day on Saturday in the yard, from about 5 am to 5 pm. and took my first Provigil at 10 am after the pharmacy called and said they were approved. I did not really sit down at all, and really overdid. STUPID STUPID, I know better.

I actually could not sleep at all on Saturday night, if it was from the dose of Provigil, or just being TOO active. I calmed down on Sunday and did laundry, etc, grocery shopping, cooking, and only took 1/2 of the 100 mg tablet and I think I am good to go with that dose.

No side effects from the AVONEX, 1/4 dose this week and add on the following weeks. My RN said to take the Ibruprofin every 6 hours, and to be sure to take my shot early enough in the evening to get 2 doses in before I go to bed. NOW thats impossible because I am in bed by 8pm, so I will put it by the bed with a bottle of water and have my dh wake me up when he comes to bed...

So far SO GOOD!

PEACE
Debe
dx 04/04 RRMS
Avonex 6/04-1/06
Rebif 1/06
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well done Debe!

Postby Guest » Thu Jun 10, 2004 10:09 am

Dear Debe

So glad that you've had no side effects. I have been on Avonex for 7 weeks now and feeling good - just have my normal numb knees and feet, but I suppose I'm used to it now.

I have even got used to giving the shot/injection and I too use my thigh muscle.

Hope all continues well for you - I'm sure it will.

Love Jady -Southampton UK
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Postby seelie » Tue Jun 15, 2004 4:56 pm

I've been taking Avonex since I can't remember when. I started on the full dose and have always used that concentration. And yes the first few months were pretty awful. It's fairly well known as the interferon flu.

But it does get better... I still dread it... and it wipes me out the rest of the night of the injection.... then the afternoon following.

For me... you can't get past this either.... if you do whatever the 'next day' to stay active you still owe this down time to Avonex and it'll take it from you when it can get it.

So it's usually Friday or Saturday night.... which kind of wrecks your weekend. So I said... Hey, I think I'll take it on Thurdsay then I can feel bad while at work.... get paid for it.... heh heh heh.... reference above paragraph.... I'm back on Friday or Saturday....

On the good side.... :lol:
Once a week is great compared to the other CRABS.
I've never had an injection site reaction.
I believe I got at least 8 years without a really 'bad one'

On the bad side.... :?
Looks like its no longer working for me and I'll have to use some other drug..... I just got me a big ole whopping apricot sized lesion, and had to spend some time being a wheelchair jockey. Now I know what a 'bad one' can be like.....

Now I'm back up on the cane but ready to be a little more agressive.... I don't want to go off Avonex for a while then move back onto one of the interferons again.... :x

I don't want to go through that again if I can help it and am not sure I will ever return to my previous baseline....


Can anyone tell me if I had been on something 'stronger' than Avonex this wouldn't have happened, of course not....

=Me
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Postby willysnout1 » Tue Jun 15, 2004 5:19 pm

From what I've read, there are studies showing that Rebif is more effective than Avonex on some measures. However, if you look into the details, they show that the increased efficacy is a function of the first six months of treatment on those drugs. In other words, from month 7 and after there is no difference.

Here is a place for survey data about Avonex, and here is a place for a discussion of Avonex vs. Rebif

Disclosures:

1. I take Avonex.

2. I'm reasonably happy with it, mainly because I only have to use it once a week and I find the side effects tolerable.

3. I have no personal financial interest in any of the drug companies.
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