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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-17-2010, 07:40 AM | #31 | |||
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Kathie and Shari,
Thank you both for your replies. How long did it take before Cellcept kicked in for you both? I really appreciate hearing the positive about Cellcept. I know there are many good reasons not to take it but there are also as many good ones for starting it. I made the decision yesterday to go ahead and start it. My symptoms have gotten so much worse since my pred dosage has been lowered. I have got to get off of it and after weighing the pros and cons decided that it is my best shot at having a somewhat normal life again. I am still very concerned about the cancer risk but have discussed it with the Dr who treated my melanoma and he feels the risk is low as long as I am careful about using sunscreen and doing monthly checks at home for any changes. I just can't continue to deal with pred side effects. I have gained 10 pounds since Oct and can't even look at myself in the mirror anymore. I feel so flabby and swollen. I seem to carry most of this 10 pounds in my stomach and hips. I have terrible insomnia and my mood swings are horrible!!! My poor husband, I can sometimes see the fear in his eyes that I am getting ready to have a meltdown. He just doesn't know how to deal with it. I go from crying to mad and feel like I am on an emotional roller coaster. Luckily my husband is so supportive and never gets mad at me for my outbursts. Thanks again, I really do feel better after reading what you both wrote. Shari I totally agree with you about following your gut instincts. I think that is what happened yesterday that made me decide I needed to go ahead and start cellcept in hopes of getting as much of my old life back as possible. Annie I appreciate your kind words about me being smart and figuring this out in due time. It is such a back and forth battle but I figure my life isn't good now so maybe the risk is worth it so I can start enjoying my life again. Kendra |
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06-20-2010, 08:41 PM | #32 | ||
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06-20-2010, 09:25 PM | #33 | |||
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TBarney,
I am no longer taking Cellcept. There were just to many side effects and the constant fear I was going to get Melanoma again. I am only on Mestinon and 15 mg EOD of Pred now. I think your fears are for good reason. I would definitely speak to your neuro about your history of cancerous moles. Maybe call and speak with his nurse and tell her you are concerned. If you don't have yearly skin cancer screenings I would get that scheduled too. I have been cancer free for 5 years now but still have to go once a year just for the screening. I have had several pre cancerous spots removed since then but nothing that had turned. If you have been on it for a year without problems I wouldn't worry terribly but would make sure you have sunblock on anytime you are outdoors and bring your neuro and dermotologist into the loop. Kendra Quote:
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06-21-2010, 12:22 AM | #34 | ||
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Kendra, I do get yearly screenings, but have not had one since I started the CellCept. It is on my "todo" list.
My son's baseball games are Mon thru Fri. at noon, prime sun time. I sit in the sun a little and then move to the shade. I am lathered in sunblock 95% of the time. I know my skin dr. is not going to be too happy with me when she sees I have tan lines. |
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06-21-2010, 09:09 AM | #35 | |||
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Yeah dermotologists tend to get very upset with tan lines, haha! I use spray tan and my dermo asked me why I had a tan. I told him it was a fake one and he just laughed. I told him I knew better than to go see him with a real tan. Good luck and keep us posted.
Kendra |
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