do most with MS have pain issues?

I am trying to sort out what may be Avonex side effects and what may be pain and stiffness I am feeling because of MS....if any.

My MS doctors nurse called today and some of her questions made me think I might be feeling aches, pain, and stiffness from things other than the Avonex.

I was having trouble with aching and pain before Avonex. The Avonex has really made it a lot worse.

Thanks,
LA

Hi LA

I've not been on Avonex, but I was on Betaseron, another interferon. I had flu-like symptoms, aches, pains, felt like I'd been run over by a truck for about the first 6 months while I was adjusting to the medication. I tend to be a bit med sensitive so it did take a tad bit longer to get used to it than most people.

However, after each shot, which is every other day, I did have some reaction. I was on it for 4 years. I premedicated with Motrin (not the OTC stuff either). It did help.

As for pain related to MS...YES...and very LOUD yes. I know that you will find a lot of people here will respond that they do have reactions to their Avonex shots. If you go to Biogen's website and read the entire prescribing information insert for Avonex, you will see some of the side effects of the medication and they do inside cause exactly what you are reading. MSActiveSource will downplay it...but if you read some of the posts from people with actual experience, they will tell you not true.

Sometimes it is difficult to tell the difference between what's MS and medication related as well as if it's something else. It ends up being a process of elimination. From my experience with the interferon, the symptoms tend to last 24 hours.

I hope your doctor had some suggestions other than it's something else. Do you have an appt?

Take care and feel better soon.

Hi,
I just saw my MS doctor early this month. She told me I could try a different medication if I want.

I am not so sure I want to go on something else though because other than these side effects Avonex is ok.

I feel very strong flu-like symptoms for about 48 hours after the injection then they start to wear off. That is what is making me wonder now if what I am feeling the rest of the week might be more MS related pain and stiffness.

I am going to call my MS doctor back and ask. Thanks for your reply. Maybe I'll get this whole thing sorted out.

If you stay on an interferon, Avonex, Rebif or Beta, you are going to have the same issues...flu-like symptoms. If you switch to Copaxone, you won't have those symptoms, but there are other issues to deal with, but at least not that.

I don't know how long you've been on Avonex, or whether you've titrated up to the full dose, but you might consider a drug holiday for a bit and see if the symptoms are still there...or go back to half dose and see what that does...just some ideas that others have tried.

When I was on Beta, I slowly titrated up b/c I was having so much trouble adjusting. Every time I would up the dose, I would have problems. But like I already said, I am very (emphasize that) med sensitive.

Good luck...I think we all feel like science experiments! I currently am...but that's a horse of different color!

LA,

The pain and stiffness are why I quit taking Avonex after having been on it for 2-1/2 years. I had very little pain before starting Avonex. I always dealt with the flu-like symptoms but they became bearable after a few months, then the last month I was on Avonex, I had such extreme joint and muscle pain that I could no longer tolerate it. I actually thought it was my MS getting worse as I started having trouble walking normally. Turns out in my case it was the Avonex.

As Cheryl mentioned, you might want to consider a drug holiday to see if your symptoms get better.

I wish you the best of luck and hope you feel better soon.

Just got off of the phone with my MS doctor and they want me to try a half dose of Avonex this week and see how it goes.

They said going to the powdered form is an option. I will be thrilled if we can get this worked out so I can tolerate the medication and still function!