[diva.baby]

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 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

[suev]

Originally Posted by diva.baby

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 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!

[redtail]

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

[dog lover]

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

[Pat 110]

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

[Kathie Glenn]

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

[diva.baby]

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