Rebif-Diarrhea

[yorkieville]

I had asked this question once before, if anyone had experienced diarrhea on Rebif. And one member replied, that, yes, she had diarrhea & she was on Rebif, but wasn't sure if it was from the Rebif.

I developed severe diarrhea, 4 months after starting Rebif.

Now, I'd like to ask more about it.

I was diagnosed with Lymphocytic colitis, 12/17/2012.

I took 3, 3 mg. of Budesonide capsules  a day(generic Entocort) for 6 weeks, with no reduction in the diarrhea.

So, then, my G.I. Doc reduced the Budesonide to 2, 3 mg. & added 3, 1.2 GM. Lialda tablets a day.

After 4 weeks on the meds, I still wasn't experiencing any reduction in the severe diarrhea.

So, in March, I took 4 weeks off of Rebif. By the middle of the 4th week, I was able to drink 2 cups of coffee a day, with Half & Half and even eat cake for my 39th wedding anniversary. (I ate cake for 4 days-no diarrhea)

I restarted the Rebif, the 1st week of April, and the diarrhea returned, after the 2nd injection.

I can't drink coffee, etc.

My MS Lifelines nurse came out, to see if I had enough fat to use the new Rebidose injector. I weigh 74#s, and the injector is set at 2, whereas I was set at 1 with the pen. And she said not one of her patients have had diarrhea while on Rebif.

My Medco pharmacist looked it up, and she said 16% of patients that use Rebif, have diarrhea.

So, I'd like some thoughts.

TIA

Sheila

[yorkieville]

Hi, Laura.

Thank you. I am stopping the Rebif for 4 weeks, and see if things improve.

I had managed to get my weight up to 82#s at one point. And to be back down to 74#s is very disheartening.

If things resolve again, after 4 weeks, I will be able to tell my MS Specialist, that the Rebif was contributing to my diarrhea.

Our insurance won't cover one of the orals.

Sheila

[Lulu54]

I would be seriously considering stopping the Rebif, since your problem resolved when you stopped for those 4 weeks.The continuing weight loss is such a worry - the diahrrea is not helping your weight.

You really need to have this chat with your neuro again - maybe one of the orals would be better for you?  
hugs, Laura

[yorkieville]

Actually, my MS Specialist asked me, if my G.I. Doc thought any of my medications were contributing to my diarrhea.

When the diarrhea began, my MS Specialist told me to take Metamucil capsules.

I started on Copaxone, but I was severely allergic to it.

I wonder if there are MSer's that cannot take DMD's.

Yes, I agree-I consider it severe, when I am on the BRAT diet, and still getting diarrhea, and I weigh 74#s.

Thanks so much for your reply.

Sheila

[immisceo]

Have you spoken to your neurologist about this? Perhaps you might look into a different medication altogether if this one is causing such a severe side-effect. (Well, I'd certainly consider it severe if it was happening to me!) If it's bad enough that you feel you needed to suspend the drug for a time, it may not be the best fit for you. No drug is side-effect free, but there are a lot of good options out there now to try.