Hi – I just wanted to give everyone my experience with Gilenya with the hope that someone that has a similar side effect might benefit.
I started on Gilenya in 2013. About 1 month into treatment, I began having loose stools. As diarrhea was a reported side effect, I wasn’t that bothered by it. The diarrhea persisted, but was somewhat controllable with Immodium. I made the decision with my neurologist that it was a side effect I could tolerate and the Gilenya people indicated that it would probably subside with time.
Well, the diarrhea persisted and as it often goes with MS, I just decided to live with it (after all, we all live with many other “discomforts”). Plus – as with MS, I am never sure what symptoms might be related to the MS or something else. About a year into the treatment – the diarrhea became more profuse, watery, and troublesome. I finally decided to go off Gilenya, but the diarrhea persisted for months after. My neuro sent me to a GI person and held off started any new MS meds. My MS symptoms have gotten worse, I lost 10 pounds and I started getting dehydrated – they tested for everything - and everything was normal – I finally had a colonoscopy and was diagnosed with microscopic colitis (specifically collagenous colitis). This only can be diagnosed by biopsy. It is an inflammation of the large intestine wall that prevents water from being absorbed. I started an oral steroid anti-inflammatory budesonide and felt better within days. I am hoping to start a new MS med as this gets resolved.
Because doctors don’t know exactly what causes microscopic colitis – some associations with NSAID use, PPI drugs, an auto-immune response, etc.. – they are hesitant to blame Gilenya - and can't prove it. However, there also have been many individuals that have developed microscopic colitis after organ transplant when they have been taking immunosuppressant medication. I personally am convinced it was a side effect of the Gilenya, as my bowels were so very normal before this and since Gilenya does have an immunomodulation effect - I am sure it has something to do with this.
Anyway, I know that side effects of medication can vary by individual, but I just wanted to make any users of Gilenya aware of this side effect with the off chance that someone else has the same reaction and can remedy it sooner.
I started on Gilenya in 2013. About 1 month into treatment, I began having loose stools. As diarrhea was a reported side effect, I wasn’t that bothered by it. The diarrhea persisted, but was somewhat controllable with Immodium. I made the decision with my neurologist that it was a side effect I could tolerate and the Gilenya people indicated that it would probably subside with time.
Well, the diarrhea persisted and as it often goes with MS, I just decided to live with it (after all, we all live with many other “discomforts”). Plus – as with MS, I am never sure what symptoms might be related to the MS or something else. About a year into the treatment – the diarrhea became more profuse, watery, and troublesome. I finally decided to go off Gilenya, but the diarrhea persisted for months after. My neuro sent me to a GI person and held off started any new MS meds. My MS symptoms have gotten worse, I lost 10 pounds and I started getting dehydrated – they tested for everything - and everything was normal – I finally had a colonoscopy and was diagnosed with microscopic colitis (specifically collagenous colitis). This only can be diagnosed by biopsy. It is an inflammation of the large intestine wall that prevents water from being absorbed. I started an oral steroid anti-inflammatory budesonide and felt better within days. I am hoping to start a new MS med as this gets resolved.
Because doctors don’t know exactly what causes microscopic colitis – some associations with NSAID use, PPI drugs, an auto-immune response, etc.. – they are hesitant to blame Gilenya - and can't prove it. However, there also have been many individuals that have developed microscopic colitis after organ transplant when they have been taking immunosuppressant medication. I personally am convinced it was a side effect of the Gilenya, as my bowels were so very normal before this and since Gilenya does have an immunomodulation effect - I am sure it has something to do with this.
Anyway, I know that side effects of medication can vary by individual, but I just wanted to make any users of Gilenya aware of this side effect with the off chance that someone else has the same reaction and can remedy it sooner.