HELP! My Neuro Can't help me diagnose this...

[Mimili]

So, I've spoken to my Neurologist about this, and he can't diagnose the issue. Therefore, I've come here for your help

I was on Rebif for about 3 years. After about 1.5 years of taking it, I started experiencing 2-3 day bouts of illness that resembled an intense flu: sweats, extreme fatigue, nausea, vomiting and headaches. These bouts began to increase in frequency. They started occurring every 6 months, then 4....2...

My Neuro recommended I then switch to Betaseron. I'm on that now. I've started experiencing the same bouts of illness. At first I thought maybe I was eating something? I eliminated MSG from my diet. However, I just got sick again last weekend. I have noticed that the day/night before the onset, I've usually had a busier-than-normal day and/or more stress than usual.

Has anyone else experienced this?

[SNOOPY]

Hi Mimili and welcome to MSWorld.

Did you notice an improvement when Rebif was stopped and your symptoms returned when you started Betaseron? If so it could simply be the Inteferons do not agree with you. I would assume your neuro has been doing blood work to check if these medications are affecting you?

The symptoms you are having are common with Interferons.

Rebif information:
http://www.nlm.nih.gov/medlineplus/d...s/a604005.html

Betaseron Information:
http://www.nlm.nih.gov/medlineplus/d...s/a601151.html

[MSer102]

Yuk! I took Avonex and Rebif for a few years and I was never as sick as you and I never had the episodes your having. But it could just be that you and interferons don't play well together. I'm kind of surprised that your neuro had you switch to another interferon after you had trouble with Rebif.

I think the only way your going to know if the trouble is coming from you interferon is to stop taking it. You can maybe switch to Copaxone. The oral medicines can have side effects like your already having so it might be hard to tell if your episodes are from medicines or from something else. Copaxone doesn't cause those side effects very often so it might be easier to tell if all the trouble is from your interferons. Good luck! I hope you get it all figured out soon.

[mjan]

Sorry for all you are going through. Yes, I agree with others that interferons cause these flu-like symptoms as side effects. There is supposed to be test that checks this fact out. Maybe your doctor is unaware?

ASK him about it~
Good luck, Jan

[Mimili]

Thanks so much for your responses!

I have had mild side effects the day of, or next morning after taking the Interferon. However, these side effects happen randomly...whether I've taken the med the day before or not.

They also completely disable me. I have hardly move, can't eat, function etc. Again, these episodes last for 3-4 days and occur every 3-5 months.

Anyone heard of this?

[mjan]

Yess, they finally figured out some of us cannot take interferon DMDs. And it is still in your system even after the shot.

Ask for that test which determines you cannot tolerate interferons ok hon?

Jan

[tambrown]

I actually had that same thing i'm not on any dmd .I had tests scope down throat etc. he could'nt find a reason but thought it may be due ibs . I take laxatives if I get even a little constipated and I have'nt had any more bouts since .

Tammy

[GardeningMSer]

Interferons are not easy

I have to say I think your symptoms are due to the interferons in both meds. I believe a new interferon has been released with its manufacturer claiming fewer side effects but I won't go near it.

I've gone through the full range of anti MS meds (C, R, N, T, & G), and recommend Tysabri followed by Gilenya for low side effects. If I didn't have anti-bodies for the PML virus I would stay with Tysabri, Gilenya causes a bit of dizziness.

[MSer102]

Have you been checked for neutralizing antibodies? Now, I've never heard of anybody getting sick from neutralizing antibodies but I'm wondering if that might have something to do with your strange episodes. If you have those antibodies maybe instead of just neutralizing your interferon they're coming and going in waves and causing some kind of big reaction that's making you sick? Just a guess.

I don't know how your going to get it figured out if you don't stop taking Betaseron.