Living with someone who has MG
My husband was diagnosed with MG when he was 23 with all classic sighns of choking weakness dropped eyelids he then had thymectomy and put on Pyridostigmine then after 2 yrs went to remission. Then boom 10 yrs ago he started having head/ neck aches tiredness and muscle weakness. And yes MG had returned hes now 62 so body not as agile and fit like in his 20s. Put back on Pyridostigmine. Then on to steroids and came of them due to too many side affects. Put on metherexate tablet form sufferd sickness feeling for 2 yrs so started taking injection form once a week and again after few yrs has had to stop .
Body getting weaker managing to work 2/3 days a week we downsized our house to make life easier. After lots of appointments hes now on mycophenolate.
He does struggle daily with simple tasks .
We applied for PIP TWICE refused.
Struggle big time now .lifes not easy to live him as frustration and mood swings appears frequently. I gave up work to be home to help.
Luckily im quite a patient person person so it is what it is .
Be interested to know if any one else on mycophenolate. Medication is ? If so how you getting on.
Hey there! We are glad to hear from you. It's understandable that dealing with the ups and downs of illness, especially when it affects daily activities and moods, can be immensely frustrating and draining. Here is an article about my experience with mycophenolate: https://myasthenia-gravis.com/living/cellcept-review.
It's commendable that you've chosen to be there for him and support him through this tough time, even if it means making sacrifices like leaving work. Your patience and dedication speak volumes about your love and commitment. Please be gentle with yourself as well. Caring for someone with a chronic illness can be overwhelming, and you deserve support, too. If you ever feel overwhelmed, reaching out to friends, family, or counseling services can make a big difference.
Jodi, Team MemberThankyou we have since applied again and currently waiting fingers crossed
Mycophenolate is commonly used for Myasthenia Gravis and can help reduce symptoms, but it often takes months to show effects. Some patients experience improved strength, while others face side effects like fatigue or nausea. If PIP was refused, consider appealing with detailed medical evidence highlighting daily struggles. Stay strong—you’re doing amazing!
