My Side Effects Are Getting Worse

[TaureDawn]

Hi all!

I was diagnosed with MS February 13th 2012. The doctor prescribed Avonex. When I first started taking the injections I got the typical side effects: headaches, body-aches, chills, my body is cold (especially my hands and feet), feeling faint or flushed, dizziness/vertigo. Some injection days I would vomit while most injection days I would not.

The problem: I've been on Avonex for around 10 months now and for the the last 3 or 4 months my side effects have gotten more severe plus vomiting each week. Has anyone had a similar experience? Why would my side effects get worse?

I called Biogen Idec and asked them about the vomiting and I was told that was not common yet I've seen others posting around the net that they vomit as well - so I'm not sure if vomiting rare or common with the conflicting stories on it. But why for the last 3 to 4 months would I suddenly start vomit each week?

I asked Biogen Idec if food has anything to do with vomiting -- not necessarily the type of foods but how much of it. And they told me that food has zero to do with causing vomiting after taking the Avonex injection. I've tested it and they seem to be correct in what they say. I've tried eating zero a few hours before and after the injection, I've tried eating very little, I've tried eating my standard amount and I've tried eating a lot (over stuffing myself) -- and, again, it seems Biogen Idec is correct in what they say.




How do I know if Avonex is not right for me? By the side effects getting worse or is it something else?

[BigA]

I've been taking Avonex for 3 years. The first year was terrible and some weeks were worse than others. I never had nausea, but if biogen say that it's a reported symptom, then someone got it.

However, you should speak with your MS nurse or Neurologist - they'll be more forthcoming than Biogen. It's not like calling the manufacturer of a device - biogen is not your doctor and is not allowed to tell you how to take your medicine differently than has been approved by the FDA.

So I recommend 1) Calling your doctor's office. 2) Ask about a drug holiday. 3) Could it be anxiety related? Why not take a Xanax before the shot? I've done that sometimes. 4) Experiment with taking the shot at different times.

And remember - if necessary, you can try many other drugs. Avonex and Rebif are the same medication but they say Rebif has fewer side effects (because it's more often, 3x weekly). There's also copaxone and the pills.

On a last note, my symptoms got better every year, but they did vary week to week.

[deborah Hofman]

I was an Avonex user

I was on this medication for 2 months. My symptoms got worse and worse. I was actually to the point of pain. Right now my doctor has me on a medication vacation. I started with Copaxon and with that I was not sleeping. Since being on my medication vacation I feel so much better. I have much more enegry and I dont feel so bloted. I go back to the doctor this month to discuss my next option. Not crazy about shots at all!! Starting to wonder is I should just wait it out and see if I have another life altering episode. This is all still new to me. I was diagonised for sure in March of 2011. Maybe just still not accepting it yet.

[philbert1998]

I was on this medication for 2 months. My symptoms got worse and worse. I was actually to the point of pain. Right now my doctor has me on a medication vacation. I started with Copaxon and with that I was not sleeping. Since being on my medication vacation I feel so much better. I have much more enegry and I dont feel so bloted. I go back to the doctor this month to discuss my next option. Not crazy about shots at all!! Starting to wonder is I should just wait it out and see if I have another life altering episode. This is all still new to me. I was diagonised for sure in March of 2011. Maybe just still not accepting it yet.

I was on Avonex for 15 years !!! In Sept. of 2012 I got sick & was taken to the hospital in a coma on life support.In Oct. of 2012 same thing.After MANY tests it was determined that the Avonex had caused my liver to shut down.I now have cirrosis of the liver caused by Avonex.I will not take any meds that have liver side effects.I'm currently not on anything & plan to stay that way.Be cautious & be as healthy as you can.

[BigA]

Philbert,

I'm very sorry to hear that. Do you have any advice (besides don't take avonex) that might be helpful for us? Did you have frequent liver tests? I have them every 3 months and I think my doctor wants to reduce them to every 6.

Were there other mitigating factors, such as drugs you were also taking, such as Tylenol?

Thanks.

[Jordan Ross]

Drink water...& tylenol

I am new to MS.
17 shots of Avonex Pen so far. Chills for a short while, then subside..This is the only as a side effect.

The last 5 Avonex Shots I had 0 side effects. Hooray!
Walking, eating, but no driving for now.
I am a very young 65.
Looking for love again after 38 years...

Hang in there. Drink plenty of water & do take extra strength tylenol a couple hours before the shot.

Jordan

Hi all!

I was diagnosed with MS February 13th 2012. The doctor prescribed Avonex. When I first started taking the injections I got the typical side effects: headaches, body-aches, chills, my body is cold (especially my hands and feet), feeling faint or flushed, dizziness/vertigo. Some injection days I would vomit while most injection days I would not.

The problem: I've been on Avonex for around 10 months now and for the the last 3 or 4 months my side effects have gotten more severe plus vomiting each week. Has anyone had a similar experience? Why would my side effects get worse?

I called Biogen Idec and asked them about the vomiting and I was told that was not common yet I've seen others posting around the net that they vomit as well - so I'm not sure if vomiting rare or common with the conflicting stories on it. But why for the last 3 to 4 months would I suddenly start vomit each week?

I asked Biogen Idec if food has anything to do with vomiting -- not necessarily the type of foods but how much of it. And they told me that food has zero to do with causing vomiting after taking the Avonex injection. I've tested it and they seem to be correct in what they say. I've tried eating zero a few hours before and after the injection, I've tried eating very little, I've tried eating my standard amount and I've tried eating a lot (over stuffing myself) -- and, again, it seems Biogen Idec is correct in what they say.




How do I know if Avonex is not right for me? By the side effects getting worse or is it something else?

[willowtree3]

I was Avonex for about 6 months and my side effects got worse and worse. I had flu like symptoms the day following my injection (I would take them at night) I was soooo sick. It was so severe that I could not get out of bed until I had taken some migraine and nauseau meds. It felt that as soon as I was feeling better, it was time to take the injection again. I'm going to the neuro this afternoon to get back on I think Copaxone. Good Luck to you!

[Pugster]

I was on it for 7 years. Had to go off it 3 weeks before surgery 5 years ago as surgeon was afraid of excessive bleeding. Never went back on Avonex. It was a case to me where the cure was worse than the disease. Been surviving.

[Justsayyes]

The only way I've tolerated side effects from Avonex is by taking 10 mg. prednisone 4 to 6 hours prior to the shot. Prednisone has it's own risks though....

Think I'd draw the line on taking it if I were nauseated and throwing up.

I always thought taking Avonex would be short term, and that something better would come along. Maybe BG12 will be my salvation?

[weena]

Side affects from Avonex

I have been on Avonex since 2008 and have no issues except sometimes I hit a nerve but I deal with it as a temporary issue.
It really helps to drink water through the day, and next day too, take 2 ibuprophens an hour or so before. I have never had nausea so I'm not sure what that's about but if I don't hydrate or take the meds I will have the "flu like symptoms". Make sure the syringe is warmed up and the alcohol swab has dried on your skin before you inject.
I rarely have anything more than some fatigue the next day.

[TLC_31]

Now i am doing this research and trying to help all other people who are currently going through treatment with any form of Interferons like Intron A, Roferon A, Pegasys...etc.

Those drugs are interferon alfa-2a, and they are not used to treat MS. Many of us use interferon beta-1a or interferon beta-1b in doses that vary from one brand medication to the other, and I'm not sure our experiences would apply to your research. My side effects are similar to some of yours, but presumably much less intense, and often mitigated by hydration and the use of Tylenol.

[seeuinct]

drink LOTS of H20

I was on Avonex for a while and I drank 100 ounces of water the day of my shot plus the adviL/tylenol. If I did not drink the 100 ounces, I had side effects which felt like a hangover/flu.
But if I did drink all that water I had zero side effects and felt fine. The only problem with drinking that much water is that you will use the bathroom a whole lot and all nite long
~see