This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone - I've been lurking for awhile and finally decided to post. I just quit injecting Avonex two weeks ago after doing the injections for just about two years. I couldn't take the side effects any longer which after two years never really subsided. On my "good" nights I would experience all the typical flu-like symptoms but after every several "good" nights I would experience extreme side effects (uncontrollable shaking - convulsion like, headache, fever, chills, sweats, you name it) to the point of severe fatigue and exhaustion the following day. My most recent side effects were weight gain this past year and very bad chest pains the last month being on the injection. I was wondering if anyone else has expereinced weight gain and chest pains. I spoke to my mentor from Biogen Idec and she told me there were many reports of weight gain caused by an underactive thyroid which could be caused by Avonex (of course there are no published clinical studies). Also, the chest pains scared the heck out of me. I've been experiencing a lot of palpitations since being on Avonex but the crushing pain was something new. Also, since I've stopped doing my injections, I have now become sick with severe sinus congestion which has turned into a head/chest cold!!!! I realized while taking Avonex I never really had a cold or virus!! So anyway, I was just wondering if any of you experienced the same type of problems while on and off Avonex.

Hi there

I have very similar experiences to you - some shots seem better than others, but many are really awful. I have been taking it for about 10 months now, and my neuro recently prescribed baclophen to help me deal with the worsening muscle spasms (there because of the ms, but much worse because of Avonex) and it helps with the ibuprofen, but nothing really takes it away. I have also just started eltroxin as my thyroid function is abnormally low (it was fine before I started treatment) - and I have gained some weight. Interferon can cause hypothyroidism, so this is an essential blood test while on Avonex. I am not ready to give up Avonex - I still hope that the side effects get better, and I have not had a relapse since starting it (I know this could be just the ms, but I was in a really downward spiral before). I also have not had any colds since being on Avonex!
Take care and I hope you get over your cold.

_________________
Al

Ally B,
Thank you so much for responding! BTW, my name is also Ally B. (but spelled Ali)!! Well I'm glad I'm not alone with the weight gain issue. I've put on a solid 10 lbs. since being on Avonex and never had thyroid problems before. Now I'm told my blood work is showing the thyroid peroxidase antibody is low. It's so frustrating. I really don't want to stop injecting the Avonex because I'm terrified of the reprecusions. My neuro told me it's not a matter of if, but a matter of when I suffer another exacerbation. But on the other hand I just can't handle the side effects anymore. It has taken such a toll on me I don't feel I am the same person anymore. So anyway, for now I will be taking a break from injecting and see how I do. Thanks for replying!
Ali B.

Hey AliB

That is so cool...Let me know how you do off the Avonex - I may end up down that road myself if things don't improve (side effects ruin 2-3 days a week).
I gained about 12lbs over around 6 months - my thyroid screening test was fine, but my free T4 was way too low. I feel a bit better now on medication, but it has only been about three weeks, so a bit soon to expect miracles, I suppose.
I also never had a thyroid problem before and it has been tested a few times over the years (when I was first diagnosed - 8 years ago, when I was pregnant with both my kids, and before I started Avonex in Feb this year - all well, until end October...
Exacerbations are terrifying and we are all held captive by that spector, but there is no guarentee with interferons that you won't get a relapse - just hope! - so choosing quality of life now is not a bad choice, you can always start again if things go haywire!
Also new treatments are just around the corner, so hang in there....I have heard that Copaxone is better tolerated - less side effects? A break will probably do you good, and your choices can be guided by how you feel - I wish you well, and please send a post to let us know how you are.

Thanks

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Al

Good afternoon,i stoped taking my Avonex:interferon beta-1a 22/10/2009 it appeared to be,doing nothing for me. The last time i was at the outpatient's clinic to see my Neuro(yet again i didn't see him) one of his doctor's said stop taking it if you want & never put me on any other medication for my MS.So i'm LOST.Do these people know what there doing or even care??????So my Mrs contacted Dr Simka with regard's to CCSVI & i've an appointment 30/11/2009.Best of luck to anyone that has this stupid disease.
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Hi,

I stopped my Avonex treatment today. I managed to take 19 needles until stopping. I have been struggling with this decision for many weeks now.

I almost called it quits during week 13 of treatment but was talked out of it by my MS Alliance Nurse. I was told that I should be on anti depressants to manage my anxiety. Right. Another drug.....

My life became worse being on treatment. I was better off before, and A LOT happier. I don't know if this is the best decision for me but my day to day life is being affected in a negative way.

I am taking my supplements and am eager to start Yoga and exercising. I was worried about gaining muscle tone due to the weekly injection.

My hair started to fall out in clumps, my monthly cycle started to go crazy. The anxiety from the injections (I have a severe needle phobia), the sweats, the nausea, the body aches. No thanks. I can't do it anymore.

I don't think I have been this happy for over 5 months now. One day at a time. Always.

Be well,
Ade

Good evening,
Well at the end of the day,it's your body & life.So it's your choice to do what ever to feel is correct.Wrong or rite only you will know.
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

Good Evening to you as well,

Please let me know how your appointment (checking for CCSVI) goes. I have been following it for months now and would like to learn as much about it as I can.

I see your from a place I dream of visiting one day. My Great Granny is from the South.

One day, I will visit your most beautiful land.

Best regards,
Ade

Still Talking
I'll let the whole world know how i get on.The truth is out there
Come and visit when ever you feel the time is rite.
Slainte Mo Chara
Edser & Anna

_________________
Never judge a Book by it's cover.
Edss Before Procedure:6
Edss After Procedure:4

HI all

I've been on Avonex for 6 -7 years. My side effects aren't as severe as when I first started. Mostly some fever for which tylenol helps. Achiness and tightness for the following day is the bigest thing now.
I have RRMS but honesly I don't think I've had any relapses for some time. Just symptoms better and worse day to day depending on what I do with myself. I don't think I attribute my steadiness to the Avonex. I really think it's more because if the lifestyle shanges I've made by leaving the workforce. I really think stress is one SOB and I can just feel it in my legs when I am stressed.
I'm debating on quitting my Avonex. I hate injecting with a passion and yes I do auto inject. I hate the side effects. Honestly I question if this drug is doing anything for me. I believe the rate of effectiveness on it was only 29 % on chances of reducing relapses. To this point I've stayed reasonably well and that's why I've stayed on the injections to this point.
I've just seen a few friends where the drug therapy honeslty doesn't seem to help them. Their side effects are horrible. I really question whether drugs are the answer in most cases or if some people were right in making better choices in their diets and going that avenue.
Someone here may say that if you're holding on reasonably well why would yougo off the injections. I basically gave my reasons. For some of you maybe your experiences were more positive by going on the drug. I think choices in lifestyle helped me stay on track.
I left work at one point cuz I had to. A year and a half later thought I was beter enough to go back and that exasperated my symptoms again. I think that answered my question. I'm not quitting my Avonex yet, but am strongly thinking of doing so. This whole CCSVI idea is something that just seems to make so much sense to me. If this gets proved wrong I'll be shocked. I just think that there has to be better answers than drugs. Drugs have done reasonably well up to this point, but in my opinion not good enough.

I have been on Avonex for 9 years now. My first year was very difficult due to the side effects. Everybody is a little different and I found Tylenol to be nearly useless for countering the side effects. Ibuprofen works much better for me. I found that I get less side effects if I take my shot in the middle of the day. About 3 to 4 hours later, I can feel my muscles start to ache and cramp up so I take some ibuprofen, usually 200 mg. This is usually all I need though sometimes I will take another 200 mg the next day. However, when I was first starting with Avonex, the side effects were much worse and I would need to take 400 mg of ibuprofen at the time of my shot and then every 6 hours after that for the next 24 hours. Have you ever tried using ibuprofen?



I also don't feel that I have had a relapse since being on Avonex. However, in the last year or so I seem to have become much more physically limited and my walking ability has worsened to the point that I sometimes choose to use a cane if I know that I will be walking some distance, more than one half mile. For me, this has been like a vicious circle. For example, MS makes it difficult to do things, therefore you do less, as a result, it's even more difficult to do things.



I have also been tossing around the idea of stopping since I honestly don't know how much good it's doing me anymore. The rate of effectiveness discussed in the doctor's prescribing information pamphlet isn't all that impressive (see this post). However, it has been shown to reduce atrophy especially with continued use, i.e., after the first year, so I hope that it's doing me some good. I've thought about going on an extended Avonex vacation for a period of time to see what happens. However, I'm concerned that I would then have a truly disabling relapse as compared to the slow spiral of the vicious circle that I've described above. However, those are just some random thoughts. I haven't decided to jump ship just yet.

By the way, I was wondering which form of the drug your taking, the prefilled syringes or the powdered form? I take the powdered form and I've heard from several people that they have less side effects with it.

NHE

NHE

When I first started on avonex 6.5 years ago I was on the powder form. My neuro about 3 years ago suggested and prescribed the prefilled syringe. Thinking back my size effects were actually worse on the powdwer than they are now. I don't know if that's because I tolerate the prefilled better or if I've just adjusted to the drug over time. MY fevers were more severe at the time when I used the powder. The biggest thing I deal with the next day now is just a total feeling of more tightness or achiness. I find getting somewhat active is better for working through rather than just sitting around. Prefilled syringe is just alot more convenient also. Just my opinion.
For your information here's some of my history. I started Avonex in 2003. When I was diagnosed I was of the mind that I wouldn't let this bastard (MS) take over my life and I continued to work hard. Harder than I should have. (Wrong move) I left work in 2004 becuse I just got my body to a point that I was so sore and tight I couldn't handle it any more. My body returned to a more reasonable state and a year and a half later I made two decisions. I quit the Avonex and returned to work. After six months I was back in the same condition that I was previously and had to quit again. I just want to point out that I know this wasn't becuase of quitting the Avonex. It was because my job was too demanding and I just couldn't do this day in and day out. I was on my feet alot and on concrete which made things worse. So anyway I left work and got back on my injections.
In my opinion, in my situation I think I've stayed reaspnably stable because I fight the pain and try to stay as physically active and possible. I'm not huge into an exersize, but I do some. I'm more of a hands on person or handymand and like to do projects like carpentry or mechanical as I was a licenced technician by trade. I just think that you must stay as active as possible and get those muscles working that haven't been working the way you wish to. I realize that doesn't apply to eveyrone's
situation.
I don't think I've had any major relapses over the last number of years. Just symptoms better and worse from day to day depending on what I've been doing sometimes. Sometimes for no reason at all. My syptoms have probably been a little worse over the last year and a half but part of that is becuse I pushed myself quite hard last year to get a project done. Long days of carpentry work. But that's the stuff that keeps me active and my mind occupied.
Everyone's course of MS is different, but I just look at my motherinlaw as an example. She's 67 ish and has had MS for 41 years. She was in horrible shape when her MS hit her in her 20's. It didn't look good at that time. She learned how to look after herself. She doesn't follow a strict diet, but she watches some of the things she should. She exersizes on a somwhat reasonable basis and she looks quite amazing considerinng her MS,the length of time she's had it and her age. She sets a real good example for me and she's why I don't look at this disease from the standpoint that there is going to be progression. That doesn't have to be the case. It's not easy but if you are going to be of the mind that you will be smart about this and do whats right for you........ a positive mind works wonders. I know for some others their situation is horrible and this doesn't always apply. By the way she was never on any of the disease modifying therapies.
I honestly don't know what to think of the Avonex I'm on. I am questioning it's pros and cons, but I'm not going to jump to any fast conclusions. We'll see what this CCSVI issue proves and I'm learning alot from people here and I thank them for that.
Maybe more info than you wer asking for but I'm finding it's interesing to know what others have or are experiencing and perhaps you can help apply this to yourself. Thanks for your info NHE

MECH..INCLINED..

I too tried avonex...i got worse....tried it for 2 months...then off...on ldn(only took away pain) some of it...then in trial for campath--been 4 months still the same...use a cane and can't stand for long at all...spastic..brainfog- can't focus on anything...pain pain pain..ms huggs(too many..lol)...

leetz

Leetz

I've actually been holding reasonably stable on Avonex. There are things I am learning that I must do to look after myself better. Too many bad habits. I consider myself one of the luckier ones with this disease. (I can't believe I just said that lol).
You sound like a friend of mine. She got hit hard and fast. They're just expeimenting with her on different things as nothing seems to be stabilizing her. She's on tysabri now but she wasn't reacting to that well.
I'm supprised they only kept you on avonex for only two months as I was told it takes time for the drug to really start working. Although it sounds like you needed a more agressive treatment perhaps. It's not easy but I fopund it helps to maintain a positive attitude. The mind does crazy things to us when we are put in this position.
I really believe that there's something to CCSVI. I just hope they can speed up the research process and get things approved. It's happening slowly.

YES...checking into CCSVI...will check in here and there on that forum...going to get checked out soon...scared!!!

Leetz