Hi, I'm new here. Diagnosed with generalized mg 7 years ago and neuro has tried everything. Currently he feels my only option left is cyclophosphamide and I have to give him a decision on whether to start it in 3 days time. Has anyone had any experience with this treatment in relation to myasthenia? Drug dosage? Duration of treatment? side effects esp. infertility? any info would be so helpful. Thankyou.

Hi Caoiltom,

Welcome to the group! I'm sorry, but I know very little about that drug. I'm sure if someone here knows, they will reply soon. Everyone is very supportive and helpful. Hope you are having a good day! Take care.

Hugs,
Pat

Hello and welcome to the site. Everyone here is great and we truely understand everything you are going through. As for the treatment you are speaking of, I myself have never heard of it. I have had MG over 18 years DXed. I did the plasma exchange and mestinon routine but now don't use anything as I became to sensitive to the meds. Rest is my treatment. Any questions you have someone here should be able to help you with. Annie will most likely know, as she seems to know everything and I look forward to her replies to anyones post

Thanks Pat and Joanmarie for your support. The med is a chemotherapy drug, my mg relapse has lasted 6 months now and we've tried ivig, increase in steroids (4omg), retuximab infusion and intense plasma exchange which is still on going. I take azathioprine as well as mestinon 4/5 daily. I just want my life back to my normality but if I take thie med (apparently very good success rate) I risk infertility and thats not something I want to think about. I've heard about the anti c5 trials and I'm hoping they're a sucess but I'll keep my chin up. You need to fight quite a few battles before you win the war as they say.

Hi caoiltom,
Dr Drachman from the Baltimore John Hopkins Shool of Medicine, is well known for his treatment of refractory MG based on high dose cycophosphamide…
Start by reading this:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Maurice.

Thankyou Maurice, this publication has been very helpful. Thanks for taking the time to post it. Much appreciated.

caoiltom
Sorry your MG is acting up, it is always is stressful starting new meds., I haven't heard of the medication your going to start on, but please let us all know how you do. It may be something that will help !
Take care, Mary