Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I'm a strong minded person, I try my best to cope on my own and handle my symptoms, been doing it for 5 years now. My symptoms have been flaring up real bad though this year and I'm shot back to my worst symptoms like trouble chewing and very bad overall weakness and I guess it triggered some bad trauma back that I forgot about. I wanna talk about it. I dont know if it's the Cellcept that I just started but I've been so demotivated and sad.
I am not yet dx'd as MG. In 2002, in the best shape of my life at the time, I started to develop weakness for no apparent reason in my arms and legs. My GP first believed I had had a "silent heart attack" but started investigating polymyositis when I told him my sister had dermatomyositis. He referred me to an Rh who took one look at me then put me on prednsone. Further testing after that did not come up with any conclusive dx, but I did experience trouble swallowing along the way.
Fast forward 18 years of (mostly) symptom-free life and I have had a massive flare-up of symptoms. Primarily upper arms/neck weakness that has affected swallowing and speech. Legs are weak also. My GP this time is also looking at MG (which from what I have found better explains my symptoms). I am waiting for the results of an ACHR test at the moment but am not on any meds. Today has been an ugly day all around.
It is hard to maintain a positive point of view while experiencing symptoms. What gives me hope is that the year-long prednisone course I was on enabled me to slowly get my strength back and I have enjoyed a long stretch of life without too many constraints. Getting the right combo of drugs can really help get you back on your feet.
I am on twitter quite a bit and if you reach out I can call you if that will help!
But back to you. Try to stay positive , take care of yourself . Exercise however you can, plan healthy meals. Get a fun hobby that you enjoy. I started a vintage clothing collection which helped me get my mind back to a good place. Stress can exacerbate this disease.
And don’t over analyze every ache, twitch potential symptom looking for something to go wrong. I really believe that a positive mindset will help you navigate this. Of course also follow the advice of your neurologist .
There are good people here with various experiences.
Share about the depression-like feelings with your doctor. I found I was more moody (irritated, weepy, scared, etc) with the med I was taking but it got better over time. However, it wasn't the one you mentioned.
See what your doctor thinks. I just called his nuse and asked... she called with dr comments.
You are not alone with MG. Welcome to DS.
Welcome to the group.! Sorry to hear you are having problems now and are discouraged.
Yes, cellcept might be the cause of feeling down.
You might read this study
https://www.ncbi.nlm.nih.gov/pubmed/18154484
Immunosuppressive pharmacologic agents are associated with a diverse array of adverse drug reactions. One of these agents, mycophenolate mofetil, is indicated for prevention of allogeneic organ transplant rejection and has recently been evaluated for treatment of autoimmune disease states, including myasthenia gravis. Although the prescribing information for mycophenolate mofetil reports depression as an adverse event, no descriptions of the onset or manifestation of this idiosyncratic reaction have been published. This case report describes a 64-year-old woman with myasthenia gravis who received mycophenolate mofetil and developed a severe depressive disorder requiring hospitalization 4 days after the start of therapy. The drug was discontinued, and she was treated with sertraline, quetiapine, and clonazepam. Within 2 days after mycophenolate mofetil discontinuation, the patient's depressive symptoms had markedly improved. Eight days later, mycophenolate mofetil was reintroduced under direct observation. After day 2 of this rechallenge, the patient reported a substantial increase in her depressive symptoms. Treatment was discontinued again, with improvement in the patient's symptoms within 2 days. Use of the Naranjo adverse drug reaction probability scale indicated a probable relationship between the patient's development of depression and mycophenolate mofetil therapy. Future evaluations of mycophenolate mofetil should include an assessment of psychological adverse effects. In addition, postmarketing surveillance should be encouraged to further delineate the association between depression and mycophenolate mofetil therapy.
So it may be you are reacting to cellcept. Contact your doctor and send the research study info along
Good Luck
Russ