Another day, another pill. At least that’s how it was beginning to feel for me in my treatment journey. Let’s set the scene. As I was rounding my 5th month with MG, my symptoms were still not settling down. We had to step it up my treatment plan. Enter Cellcept stage left.
To recap, I was already on Mestinon 4 times a day, taking 60mg of prednisone daily and doing IVIg. You can click those links to read about those if you haven’t already. I digress. My heart nearly broke when my neurologist said he wanted to add Cellcept to the equation. Like how much more medication could a person take?
Cellcept is an immunosuppressant like prednisone but a little less harsh on the body. Its true name is Mycophenolate Mofetil but since we’re so close, I get to call it by its nickname Cellcept. No worries, you can too. Cellcept suppresses the immune system and reduces production of those wayward antibodies that are making your muscles weak.
Funfact: Cellcept is also used in patients receiving organ transplants to reduce the likelihood of transplant rejection.
- Low white blood count
- Skin rashes
- Swelling in the hands and feet
Unfact: Cellcept is NOT recommended for women who are pregnant as birth defects are possible.
When I heard I had to add more medications to my daily cocktail I was dismayed. When he said two pills twice daily I was disgruntled. But when I saw the size of those bad boys I was deeply disturbed. I’m having difficulty swallowing simple things like water and spit and you think I’m supposed to get these horse pills down with ease?!?! OK, they are THAT big but they are pretty large.
I think the hardest part for me was taking the pills and integrating it into my daily schedule. I had to take my Cellcept on an empty stomach. But I needed my prednisone and mestinon with food. If I didn’t take my prednisone and mestinon as soon as a woke up, I’d be in trouble. It took about a month before I had perfected my med schedule.
As far as side effects with Cellcept I think it was nausea, skin rashes and swelling. To be honest I don’t even know for sure. I was on so many meds at this point who knows which was causing what. I will say that around this point I was still miserable. Headaches, nausea, upset stomach were just apart of my day to day. Also my hair started falling out and I was developing edema. It was to the point that if u touched me, you finger print would linger for a while in my skin. I decreased my amount of water intake and that seemed to level me out a bit. Who knew that there was a such thing as too much water.
Fast forward a year and a half later and I’m still on Cellcept, Two pills. Twice a day. Most if not all of the side effects have subsided. My body is used to it now. According to my doctor is takes months for the medication to fully be in your system and start working. In a choice between Cellcept and Prednisone, I choose Cellcept. It’s not as fast acting as prednisone but you can be on it longer without such harsh side effects. In my opinion the main negative to Cellcept (besides the size of the pills) is that you can’t be on it and have children. But that’s for those of us who haven’t had kids yet.