-
Mycopenolate side affects?
Been taking this for about 9 months now. 500mgx2 twice a day. So 2000 a day. I know MG contributes to exhaustion and weakness but over the last few months, I just sometimes cannot keep my eyes open during the day and because of this, my sleep patterns completely altered. Originally when I was on 80mg of Preds I had terrible insomnia, but now down to 15mg a day and not so bad and yet trying to figure out what is causing this lack of energy and just feeling so tired all the time?
Also and again in the last few months developed edema in the ankles and now taking Furosemide and have this under control somewhat plus groin rash(again creams have helped) and when I look up the side effects of Cellcept(Mycopenolate) they are far and wide and include my symptoms.
Will be having my second vyvgart hytrulo injection tomorrow. I noticed no difference since my first one last week and was hoping that the weakness, or better still the feeling of being shattered half the time might help, but not so, therefore trying to figure out what else it could be, so just wondered if others could comment here or have similar issues plus what I could do to lessen this factor. Trying to lose weight by doing more exercise, and it’s not happening due to me having no energy to do so.
Again, I realize that what I am describing could be part of the disease and yet the having to go to bed during the day for two hours at a time only started about 2-3 months ago?
Any and all advice appreciated?
-
4 Replies
-
I recall commenting on a previous thread discussing mycophenylate mofetil side effects so perhaps check that one out. There’s a similarly named drug so apologies if I’ve got the wrong one. However, I’ve been on the same dose of mycophenylate (nothing else) as you since 2019 and I find that it’s effect starting waning after 3 years. I have less energy than before and get the same overwhelming fatigue only mine is most often when I wake up at night. I have osteoporosis so catching myself pitching forward because I’m falling asleep when sitting on the edge of the bed is frankly terrifying. I find the body fold rashes mostly preventable with thorough drying after washing with antibacterial soap. I know that antibacterial soap is not recommended but it keeps the rash at bay better than plain soap and I’d have to use topical antibiotics more often anyway if I didn’t use antibacterial soap. I also get at least 1 sinus and 1 bladder infection annually that require antibiotics right away. I’ve had an upper respiratory bug for the past 4 weeks that is slowly increasing in severity as I can’t fight it off completely.
-
I’m sorry to hear that you’re having these side effects. I’ve been taking 2000mg of MMF for several years with no side effects. I suffered from acute edema but was successful in eliminating the edema by cutting my amlodipine dosage in half (not related to my MG.) Maybe my experiences will help in finding ways to reduce the side effects you are encountering. I wish you well.
-
<div>I have had gMG since 2017, and the experience has been interesting. Some days I feel and act almost like a normal person, but other days are horrible, where I feel achy and can barely move. Nuts. Over these past six years, I have varied the amount of daily 60mg Pyridostigmine from 3 to 5 tables per day,</div><div>
and now settled on usually 3 tablets between 6:00am and 3:00pm. Occasionally, I also take 1 500mg Mycophenolate if I feel that is needed to “make my day”! Considering that all of the medications do cause undesirable side effects, I eat healthy and minimize the use of medicines, but do take enough to keep me alive for now. Note that I avoid meds late in the day, as that inspires an excessive amount of Acetylcholine to enter certain muscles (usually legs) and cause involuntary muscle contractions (cramps) resulting in excruciating pain that is only relieved by standing up to involve the brain/nerve interaction is the muscle contraction/relaxation process. Oh my. Since each MG patient has a somewhat unique experience, each patient may need to work with more thatn one neurologist to discover what works best. Hope this helps somebody out there.
</div>
-
The use of Cellcept long term can be a factor in causing cancer. My Primary Care Physician bugged me for a year to get it changed to something else. (I am a cancer survivor) When I changed, the ringing in my ears stopped and I generally had more energy.<div>
Juanita
</div>
Log in to reply.