Rebif and liver problems?!

[DahlblomDriven]

I started Rebif shortly after my diagnosis, and had side effects during the whole tri pack. I kept my neurologist informed of all my side effects including headache, intense stomach pains and severe itching. We did bloodword once I worked all the way to the 44mg and came back with elevated numbers and they lowered my dosage to the 22 mg for a few more doses and retested to the numbers are higher. They took me off of rebif completely and tested two weeks later for the numbers to keep climbing. Has anyone had this happen? I don’t know what’s going on and I feel like I’m stressing more. After the last results my Nero wants to recommend me to a Hepatologist. He said that a week ago but hasn’t email back with more info or retuned my call. I can’t help but stressing! I start a pretty intense school program next week and kids go back to school as well and so disappointed I thought I would have all this figured out before.

[Lilith08]

Oh, no! I haven’t had that problem but I know Rebif can affect liver function (thus the regular lab work).

I’m curious if others have had such a strong reaction to Rebif. The most I’ve ever heard of is flu-like symptoms on injection days. I suppose headache and stomach pain might fall into that category but the itching sounds unusual.

I do hope you get sorted out soon!

[Frances_B]

Did you have a full set of blood tests BEFORE starting Rebif? The docs need that to get a baseline on your liver function before you start, and because the interferons are known to have a possible side effect of affecting your liver.

I'd suggest you call your Doctor's rooms again, and explain that you really need to know why he wants to refer you on to a liver specialist, and just keep gently persisting until you get some answers. You also need to discuss with him what alternative MS drugs you should be considering. The interferons do still have a place (sort of) in treating MS but they are not as effective at reducing relapse rates as the newer drugs can be. However, the usual trade-off is that the newer drugs can have more serious side-effects, especially with infection risks from suppressing your immune system.

I had some increases in levels for my LF tests while I was on Rebif but more noticeable in my bloods was that my platelets went down - they didn't go below the bottom end of the reference range but they did drop by 25 to 30% on my historical levels. I ended up stopping Rebif for other reasons - mainly because the flu-like side effects never stopped for me and that meant I was just about living on Paracetamol and Ibuprofen (which they tell you to take to counter the flu-like side effects). Rebif also seemed to be making all my symptoms worse - which when I stopped it turned out to be correct - my leg function improved, my depression lifted, the muscle spasms in my legs stopped - all within ten days of stopping.

[Lilith08 in reply to Frances_B]

Interesting that your symptoms worsened—glad you found something better for you! My platelets were down below the normal range for nearly a year but they’ve bounced back, finally. Glad I didn’t get sick during that time.

[MarkUpnorth]

Yes, I charted my SGOT AND SGPT for years, as they remained elevated multiple times normal, consistently. I was told that was normal, and till it got up to 100-200x normal, not to worry. So I diligently continued charting for years.

Went back to the normal range after stopping DMT's per doc's recommendations, not due to this, but due to full time, (years of) flue like symptoms AND no efficacy according to my doc's records.

[sdgriffin763]

Keep in mind, there is no quick fix. I get along well with Rebif, and have been on it for 15yrs.+. I do feel a bit dizzy, nauseous afterward - so I take it at night. My numbers have always been good. If the drug doesn't work for you move to one that does. There are many to choose from now that each work a bit differently. It sounds like you may have something going on in addition to the MS, almost like an allergic reaction. Not all of you physical maladies are part of MS. Hopefully your doctor will be able to sort it out.