CellCept’s Benefits Were Worth Dealing With Its Side Effects

Michelle Gonzaba avatar

by Michelle Gonzaba |

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Strength in Weakness column by Michelle Gonzaba / grief

When I was diagnosed with myasthenia gravis (MG), I quickly became overwhelmed with all of the different ways it could be treated. I had no idea which treatments would work best for me, but I trusted that my doctor would choose the best course of action.

Like many people newly diagnosed with MG, I was immediately put on prednisone and Mestinon (pyridostigmine). Each medication came with its own list of possible side effects, such as acne, stomach issues, and excessive sweating. Although the side effects stressed me out, I wasn’t very worried. I was willing to be inconvenienced if it meant I’d go into remission.

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Eventually, my doctor wanted to add another medication to my rotation. I started to take an immunosuppressant called CellCept (mycophenolate mofetil). Although it’s mostly used by transplant recipients, it can also help those with MG. The medication stops the formation of antibodies that destroy acetylcholine receptors on muscle cells, leading to the signature MG muscle weakness. At that point in my treatment, I was willing to take anything to get back to my normal life.

I quickly became nervous about CellCept when my doctor said I would need to have blood tests done every six weeks. Like all treatments, CellCept came with potential side effects. But these seemed much more serious than with my other medications.

My doctor explained that my chances of getting a serious infection or certain cancers would be higher while taking CellCept. Suddenly, acne and stomach trouble didn’t seem so bad after all.

Every single blood test was stressful. Before an appointment, I’d be anxious about what could possibly be going on in my body. While driving home after completing each test, all I felt was fear. I dreaded receiving my test results.

I took CellCept for three years. Luckily, the removal of my thymus gland alleviated most of my symptoms, and my doctor said I didn’t need to continue such heavy-duty treatment. After three years of blood tests, anxiety, and multiple treatments, I was able to slowly taper off the medication. My blood tests eventually went from every six weeks to every three months, then to never again. Luckily, every test came back normal.

Like other treatments, CellCept had its negatives and positives. It helped me regain my strength, but created a constant fear of infection. Still, I wouldn’t change anything about it. I’d still take it because my determination to get better will always outweigh my fear of the unknown. Yes, it’s a harsh medication, but it helped me get my life back.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Douglas F Young avatar

Douglas F Young

Fear of cancer (as opposed to cancer itself) is not a very serious side effect of CellCept. For high risk people, CellCept's potential for interference with the protective effects of the covid mRNA vaccines may be more dangerous. The CDC is now considering 4th shots for immunocompromised people, but in the absence of addressing the effects of their immunosuppressive medications, the 4th shot may just be doing the same thing over and over and expecting. different results.

Tinkering with the medications is not for everyone. But for patients who have been stable on their current medications and treatment protocols, who are not in immediate danger from cancer or organ-rejection, a short and targeted vacation from some of the immunosuppressants before subsequent injections might be discussed with their doctors.

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