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...
Hi I am 63 yr old female in the UK.
I was diagnosed with Generalised Mg in June 2014 and started treatment with Pyramidstigomine and Cellcept in Sept. This seemed to be quite effective, 90mg Pyriamidstigomine x 5 day (tritrated up obviously) and then 500mg Cellcept. I was virtually symptom free after about 3 weeks. Unfortunately it didn't last and after catching cold from grandchildren's visit I was back to square one, only with worse symptoms.
I visited my GP but couldn't get an appointment with my neurologist so she decided to double my Cellcept dose to 100mg and wrote to my neurologist informing him, taking the view I could be waiting 6 weeks for an answer if she wrote before she increased the script. (I do like her!).
I didn't notice much difference in symptoms, then Christmas Day caught flu from other set of grandchildren and was quite ill, but then so were half the population! I was very grateful to escape any breathing complications although I had a few moments when wearing a bra.
I am recovery my energies generally quite well but my Occular symptoms are not showing any improvement and am back to patching one eye to function for more than a few minutes focussing.
I chose to go on Cellcept because it seemed more efficacious for Occular than other immunosuppressants. My question is :- how long does it usually take to become effectively? My white cell count is now going up, not down, is that an indication of the efficacy for Mg?
I have learned loads from this forum reading all your experiences and thank you all for sharing.
I was diagnosed with Generalised Mg in June 2014 and started treatment with Pyramidstigomine and Cellcept in Sept. This seemed to be quite effective, 90mg Pyriamidstigomine x 5 day (tritrated up obviously) and then 500mg Cellcept. I was virtually symptom free after about 3 weeks. Unfortunately it didn't last and after catching cold from grandchildren's visit I was back to square one, only with worse symptoms.
I visited my GP but couldn't get an appointment with my neurologist so she decided to double my Cellcept dose to 100mg and wrote to my neurologist informing him, taking the view I could be waiting 6 weeks for an answer if she wrote before she increased the script. (I do like her!).
I didn't notice much difference in symptoms, then Christmas Day caught flu from other set of grandchildren and was quite ill, but then so were half the population! I was very grateful to escape any breathing complications although I had a few moments when wearing a bra.
I am recovery my energies generally quite well but my Occular symptoms are not showing any improvement and am back to patching one eye to function for more than a few minutes focussing.
I chose to go on Cellcept because it seemed more efficacious for Occular than other immunosuppressants. My question is :- how long does it usually take to become effectively? My white cell count is now going up, not down, is that an indication of the efficacy for Mg?
I have learned loads from this forum reading all your experiences and thank you all for sharing.
That is important when you have symptoms.
Also prednisone.
Mestinon works quickly.
I was told the cellcept would take about a year to work.
When I had symptoms it did take a year for the medications to work. I read somewhere that it takes a while for the bad stuff to get out of our system and to quit producing the bad stuff.
I wash my hand every time I enter my home. I shower at night to wash away germs. I have become a germ crazy person but it has worked. I am so tired of showering at night I didn't the other night and now I have slight cold symptoms. My husband washes his hands frequently
Grocery stores have so many germs.
I would think prednisone and mestinon would be good choices for you. Also....do you rest your eyes? Computer and reading as well as any use aggravates my eyes when I am having trouble.
Have a great day
Ann
Interesting you say about germs. It seems to be meeting people out my area which gives me colds etc and that exacerbates everything. I carry antibacterial gel with me when I am out so am a bit bonkers about that when I visit public loos etc,
I really don't want to start on Prednisone unless I can't cope with symptoms and although I have to patch I can manage mostly. I agree screen work tests the eyes, I am usually ok for an hour or so but if I do concentrated work it deteriated. I have been doing my tax and that has meant hours of screen work and that has definately not helped but then I have no choice as I have to return by 30th or face fines.
I do remember my neuro saying it will be months rather than weeks but I was hoping for better, I guess I will have to be patient, never a strength of mine. They say that every illness teaches you something so patience is definately going to be it!
Stay well and thanks for reply. I have read yr posts for some time and drawn strength from them, thank you.
I am saying this only because I wish I would have started on a low dose of prednisone. It may have kept away my crisis. Crisis was weeks in intensive care and on a ventilator for breathing. Because of the crisis I had to go on 60 of prednisone. Now I have weaned off and I am only on 7 of prednisone.
Not fun.
If you went on only 5 of prednisone you may get rid of the symptoms and prevent further problems.
That is what I wish I would have done. It cant hurt ...it can only help.
Once you start Prednisone, hard to EVER get off of it. It will almost guarantee you to have other issues related to it. You only have trouble with your eyes, it may not be necessary either. I have never taken Prednisone and have little to no trouble with my eyes at all. Mesinon was key for me though when through rougher times. Cellcept will help eliminate mestinon altogether. I don't have to take mestinon anymore, but I do take about 60 mg a day when I am to be more active.
Hang in there.
I do have some problems with bulbar, I had to pull out of my choir as my voice goes husky and then disappears after only 1 hour singing. Before treatment I was quite bad but I was also recovering from 2 RF ablation procedures, the second had a lot of complications including getting a TOE stuck in my oesophagus becauseit was in spasm. My EP doc thinks now that was the Mg. My heart then stopped and I was quite ill for a bit. I therefore thought the weakness and fatigue was all due to this so didn't think anything of it until my eyes closed whilst I was driving and I couldn't open then.
It has affected my large muscles but only when I overdo things, I find the Occular the most troublesome as even when resting I cant do anything and it is driving me bonkers!
I had probs with swallowing a couple of times and by evening I can't hold my neck up well but apart from that I am more or less ok, just frustrated.
I am seeing my neuro on 10/2 so I will discuss with him then. He is very supportive and wants to "keep me walking". I am aware of the possibility of crisis as my neuro gave my husband and I a very stern and comprehensive warning not to dally if any probs with breathing and I carry an emergency card in my bag.
I understand about prednisone and really do want to stay away from it as I am afraid of the impact on my arrythmia and long term effects.
Thanks again for your replies.