Newbie Saying Hello!
 

Just saying Hello, I dont know why I just thought about joining a forum with people who know the struggles of MG. I am 24 and i was diagnosed back in 2005/06 . I pretty much blew of my diagnosis because i was fine for the most part until last year i had a crisis and i was hospitalized over a month :rolleyes: I am currently on prednisone & mestinon .... My doctor wants me to start cell cept which im not really sure about. I went from rarely being sick to having a cardiologist, pulmonary doc, and a neurologist anyhow I am grateful to still be ticking .... Thanks for reading :)

Welcome Diva!

Hi and welcome,

sorry you are going through all this. I know what you mean about being helthy then visiting heaps of doctors.

There is a thread about cellcept, which I will bump up for you, if you've got any questions about it, just ask, we are a friendly helpful bunch here
Kate

newbie saying hello!
 

Divababy,
Hi and welcome. I see Redtail posted what I wrote about cellcept so you could see it, thanks Redtail. I have had some very extreme side effects from it. I too am on pred and Mestinon. When you read the post you can tell that some people have done well on it and others haven't. I think the most important thing is to pay very close attention to any side effect so you can pinpoint it to cellcept. My worst side effect was chronic memory loss. I would consider it demensia like. I also had insomnia, night sweats and a constant feeling or anxiousness and shaking in my hands. I was not aware that memory loss was a side effect until I contacted my neuro so just be sure to let them know about anything that seems our of the ordinary if you decide to start it. I feel for you in having to make this decision. I filled the RX and let it sit for 2 weeks before deciding to give it a try. I have had malignant melanoma in the past and was terrified of getting it again from cellcept. Sometimes I wonder if the horrible reaction I have had to it is Gods way of telling me that I should not be on it. I wish you the best and hope you find a treatment that works for you whether it is cellcept or something else.
Kendra

Hey Diva Baby,

Welcome to the group! You will like it here. As you can see any questions you have will gladly be answered. I was diagnosed in 01 and only take Mestinon, so I can't help with any cellcept guestions. Hope you do well on it and keep us updated. Take care.;)

Hugs,
Pat

:hug:
Welcome Diva Baby! I have Ocular MG and am on Prednisone, CellCept and Mestinon. Weaning down presently on Prednisone! Yeah! I started CellCept after Infuran didn't work (bad side effects). I have night sweats, some memory loss which I thought was due to my age (60) hee! hee! but don't know of any other side effects. I am on 2000 mg daily. I have had so many side effects from the Prednisone that it is hard to tell if any are from CellCept. All I know is that the combination of Prednisone and CellCept got my double vision under control to some extent. When I added Mestinon a month ago the double vision almost went away completely! I wish you the best and pray for you to make the right decision for you. Kathie

The memory loss is a big Problem for me !!! I will be in school and i cant afford to have memory problems :rolleyes: