When does it get better??

[readingteacher]

I've been on Betaseron since sometime in June. I got up to the regular dosage in early July; July 4, to be exact. It wasn't bad, in the early stages, when the dose was pretty low.

Now, I find that I am almost continually having to take my rx Ibuprofen to fend off the flu-like body aches that come as a side effect. I thought it would just be: right after the shot, if I woke during the night (like now), and maybe once during the following day. Then I thought it would be: right after the shot, upon waking during the night, and most of the next day.

Unfortunately, I am finding that I need to take it almost constantly. At first, I tried not to take it exactly every 6 hours on the day after; sometimes with that working. Now, I have to try very hard to put off taking it unless I absolutely feel horrible, on the day I am supposed to take it again. Sometimes, it seems like I can put it off and feel pretty good if I am busy. But that isn't always the case.

This was the main reason that I chose Copaxone, in the beginning. I didn't want to feel achy and run down for most of the week. When will my body begin to tolerate this DMD better? Is this how it will be from now on? Please tell me that it DOES get better. I don't want to be "hooked" on my rx Ibuprofen (800 mg.) in order to make it through each day, 6 hours at a time, as a way of life.

Anyone have any advice? I want my DMD to be something I can LIVE with; not barely function because of taking it.

[JerryD]

I have no experience with DMD's. I'm PPMS. There is nothing for me. I just wanted to send you some good thoughts. Maybe, your neurologist can suggest another drug to use. I doubt that your body will become less 'resistant' to Beta. Good luck

[Alicious]

This is why I switched from Rebif to Avonex--it was 24 hours of hell after each shot. Once a week was better than every other day.

Studies have shown that if you are going to acclimate to the interferon it will be in the first 6 months. If you haven't by then, you are unlikely to. You're still new to the med, but honestly I'd switch to Avonex at this point. It's the same chemical once a week in the muscle, and no joke, the shot hurts far less to administer.

Or, if you are comfortable with it and your insurance will cover it, Tecfidera is a great option for many of us.

[Alicious]

D'oh! I was speaking Rebif instead of Betaseron, but even though Beta and Avonex are a little different, the studies about the acclimation bears out for both. I'd switch to Avonex if you have to take a shot.

[Kimba22]

So sorry your having such a hard time. The full dose of interferons is initially hard for the majority of us to adjust to. I'm sure you don't want an ulcer, either, from all the ibuprofen! Maybe you'd respond better to a different NSAID and be able to take it less often. I've read quite a few take Aleve (Naprosyn) instead of ibuprofen and do better on that.

It took about 6 months before I started adjusting to the flu-like side effects. I didn't start out on Betaseron, though. Luckily I started on Avonex so only had to deal with feeling cruddy for 24 hours once a week. When I transitioned from Avonex to Rebif (another interferon 1a), and then later, Betaseron (interferon 1b), I had no problem.

Another suggestion may be to titrate slowly from the 1/2 dose up to the full dose, instead of trying to go straight up to the full dose. I had to try this approach after I was rechallenged with Rebif , but going from only 1/4 dose to the 1/2 dose. I was on it over 2 years w/o a problem when I started getting really high fevers. Didn't work, though, got another high fever just below the 1/2 dose. My system just couldn't tolerate the drug anymore.

So when does it get better? Unfortunately, only your body knows Some people never adjust. Or, in my case, I did adjust only to reject a drug later. The good news is you did OK on the lower dose, so hopefully that means your body will adjust to the full dose. And, hopefully, sooner than 6 months!

I hope you find something that works soon so you can tolerate the full dose of Betaseron. Otherwise, ask for a different DMD.

Good Luck!

[readingteacher]

Kimba,
I was wondering about just switching to something like Aleve, as well. I may try that. I think I will try to be more patient with the process.

Believe it or not, I had a much easier time yesterday (after injecting the night before). I started out feeling yucky and lying down didn't help (after taking my Ibuprofen). I am visiting with my sister-in-law and her family, so I didn't want this to get in the way.

I went out with her and our girls for lunch and a rare trip for pedicures. I had such a great time and felt so much better! I thought I would be counting the hours to my next dose of Ibuprofen, but I didn't even think about it! The relaxing experience of getting out and the really relaxing pedicure and back massage made my day!

Hmm...Do you think my insurance would cover a pedicure and/or MASSAGE a few days per week?

[DMG]

Each person is different so it's hard to say what will work per individual.

I started on Avonex, then Rebif, then Betaseron. When I started Beta my neuro wrote me a script for 500mg Naproxen (Naprosyn) to take when I do my shot.

I take one with each shot and can sure tell if I forget to take one. Shows me that the Naproxen works for me.

Like I said, I know that everyone is different, but hopefully you'll find what works for you. Betaseron was the only thing that slowed progression for me.

David

[mac1ntosh]

I've been on Betaseron for quite a while now, and sometimes STILL get the side effects. I take ibuprofen after each shot, so every-ther-day.

On the occasion when I think "oh I'll just skip the ibu this time" BAM!

the flu-like symptoms start in. I guess I'll never be without the side effects.

Jody

[BigA]

I'll tell you my experience: Avonex, 3 years. Only relatively side-effect free for the last year. It took two full years. It got gradually better.

I suggest you go to Avonex. Also, if it interrupts your sleep, take it in the morning as I do. That way, you can precisely time your pills. I use aleve. I have tried taking the shot before bed exactly 2 times and it was a terrible experience. I may try it one more time, but I have a good routine - and it's only 1x weekly. Plus there are no skin reactions.

[Bob698]

I've been on Betaseron for quite a while now, and sometimes STILL get the side effects. I take ibuprofen after each shot, so every-ther-day.

On the occasion when I think "oh I'll just skip the ibu this time" BAM!

the flu-like symptoms start in. I guess I'll never be without the side effects.

Jody

Same here. Five years in and I still take Advil an hour and a half before shot time. Every now and then Beta just mugs me. It starts about two hours after I inject and I'll get chills and the shakes for a couple of hours then what feels like (but isn't) a fever for another couple of hours.

This happens at random. I have a theory that I might have accidently injected too close to a capillary vein and, in effect, "mainlined" the shot directly into my blood stream.

Its also possible that some shots are just more equal than others.

[hope32]

I had problems for months and was having to take lots of Advil as well. (To the point I developed a pre-ulcer and ended up getting switched to Celebrex ... which lasts longer, too; you might want to look into it.)

Anyhow a nurse gave me a tip that really helped, even though it might sound word: Walk/jog/generally keep moving for a good 10-15 minutes right after each injection. I'll do a hot compress for a minute first and then get moving. For me, doing that made a HUGE difference in how much of the flulike symptoms I felt the next day. If I skip or even just try to shorten the time, I feel a lot sicker the next day. Might be worth a try if you haven't yet!