CellCept (mycophenolate mofetil): Quarter of patients in small...

I have at times had anger towards my mother because she would never stop smoking .Because I was sick at
birth with the worst Asthma I did not come home for weeks from the hospital because I needed this see through tent that would zip around my bed and blow my breathing treatment all night. The Doctors her Please do not smoke in front of that child she did nothing to help me and I get this picture of a baby that is me trying to breath in my smoke filled blanket.
I had a big zest for life and fast forward this story to Hawaii about 10 years ago I wanted to move there and open a private snorkeling business my Asthma was a pain but I dealt with it I got all kinds of side effects except pimples and gaining weight. Now here is the son or a bitch! All of a sudden I cant breath it was nothing like Asthma. I had just woke up that mourning and tried to bend down to get something and I thought I was dying I was fine as long as I did not move. A ton of 911 calls I get the news I have Pulmonary Fibrosis
I knew it was bad the doctor called my mother to fly in to talk it was that serious. She shows up and says she could night have me come home (My mother lives in a 6 bedroom house) The doctor proceeds to tell UCSD is the best place for me its 40 miles from your house. NO ok she gone. My doctor did what he could I did mexotrate I did interferon gamma 1 B for over a year and half and 2000mg of CELLCEPT and mucuamist please excuse my spelling. I was 36 years old and finally I doubled my weight I always weighted 140 lbs NOW my teeth have rotted oh yeah I am on o2 24 hours a day plus I cant read.And my hair is falling out.
There is a statement that they say sometimes the cure is worse then the disease but with what I have there is no cure for it! I saved my money to come to north county and go to UCSD but I have to tell you I dont know myself anymore. Yeah my Mother lives 20 miles away and has never come see me in ICU here or seen me at all.
Please anyone help me I am so scared there is sooooooooooo much more but you would not believe it.
I am a good woman and a world traveler, musician, and a poet I love people, I love to surf, scuba dive,
sit with friends and drink nice red wine and talk. I am just a shell of who I used to be.
Please any takers on this subject? I am alone, Someone help me I am scared.

Please write me here or write me at Addicted2H2O@aol.com

Sincerely,
Kels

Freida wrote:

I have been taking CellCept @2yrs. I am having trouble with insurance wanting to pay for the medicine in the mg strength that I need. Has anyone encountered this problem? It seems like they only want to pay for the medicine if you have had a transplant. Any suggestion would be greatly appreciated.

I take CellCept for MPA, and like you, have not had a transplant. For my insurance company (Humana) I have to hae a completed "Prior Authorization Form" completed by my Dr and sent to the company to get coverage. I am having to repeat that step now to see if I can get the generic!(You would think the company would be glad to have me buying the cheaper version!) Good luck!

Sorry good hearted people I really wrote a book! I should just stuck to the side effects. Last night was just a hard night. I need so much help I dont even know where to start. Last night I pulled out a whole chunk of my hair out it left a bald spot I just cried and I have always weighed 140 at 5'6 now I have gain my weight and I look like a freak of nature it does not look like fat my arms are huge I my huge! My legs are so swollen that I have to make a opening place on my foot so all the water can drain out. I swear it drains about an 8oz glass there is some blood but not much. My teeth have broken off! My eyes are so bad and I am a musician and I could not play because my fingers were cramping or I am out of breath I love life and this is tuff for me. hate this water weight does anyone know anything to help start getting the weight off? All of this is from except Prednisone and Cell-cept at 2000mg and the Prenisone is at 80mg.
http://www.youtube.com/watch...
Please write me at Addicted2H2O@aol.com or here on this site Above is a URL for YouTube watch it I love to when I feel down.
Thanks
Kels

Kels HELP wrote:

I have at times had anger towards my mother because she would never stop smoking .Because I was sick at
birth with the worst Asthma I did not come home for weeks from the hospital because I needed this see through tent that would zip around my bed and blow my breathing treatment all night. The Doctors her Please do not smoke in front of that child she did nothing to help me and I get this picture of a baby that is me trying to breath in my smoke filled blanket.
I had a big zest for life and fast forward this story to Hawaii about 10 years ago I wanted to move there and open a private snorkeling business my Asthma was a pain but I dealt with it I got all kinds of side effects except pimples and gaining weight. Now here is the son or a bitch! All of a sudden I cant breath it was nothing like Asthma. I had just woke up that mourning and tried to bend down to get something and I thought I was dying I was fine as long as I did not move. A ton of 911 calls I get the news I have Pulmonary Fibrosis
I knew it was bad the doctor called my mother to fly in to talk it was that serious. She shows up and says she could night have me come home (My mother lives in a 6 bedroom house) The doctor proceeds to tell UCSD is the best place for me its 40 miles from your house. NO ok she gone. My doctor did what he could I did mexotrate I did interferon gamma 1 B for over a year and half and 2000mg of CELLCEPT and mucuamist please excuse my spelling. I was 36 years old and finally I doubled my weight I always weighted 140 lbs NOW my teeth have rotted oh yeah I am on o2 24 hours a day plus I cant read.And my hair is falling out.
There is a statement that they say sometimes the cure is worse then the disease but with what I have there is no cure for it! I saved my money to come to north county and go to UCSD but I have to tell you I dont know myself anymore. Yeah my Mother lives 20 miles away and has never come see me in ICU here or seen me at all.
Please anyone help me I am so scared there is sooooooooooo much more but you would not believe it.
I am a good woman and a world traveler, musician, and a poet I love people, I love to surf, scuba dive,
sit with friends and drink nice red wine and talk. I am just a shell of who I used to be.
Please any takers on this subject? I am alone, Someone help me I am scared.
Please write me here or write me at Addicted2H2O@aol.com
Sincerely,
Kels

I am feeling so much compassion for you right now.... I am a church goer in Iowa, and I feel that there are always good people who are willing to give you moral support when needed here in the "heartland" and I would hope also in California. I understand your anger at your mother, but that is something you must try to leave behind you and concentrate on yourself. I would suggest that there are probably support groups where you can meet for conversation and counseling from others who are facing similar scary situations. There are probably Tai Chi groups (there are 'chair' Tai Chi groups) that you could join and the meditation involved in that would be good for your breath control and peace of mind. The main thing is to not try to face it alone. Prayer, meditation and contemplation are very helpful to see you through difficult times. God bless you.

Kels Sorry m pity pot wrote:

Sorry good hearted people I really wrote a book! I should just stuck to the side effects. Last night was just a hard night. I need so much help I dont even know where to start. Last night I pulled out a whole chunk of my hair out it left a bald spot I just cried and I have always weighed 140 at 5'6 now I have gain my weight and I look like a freak of nature it does not look like fat my arms are huge I my huge! My legs are so swollen that I have to make a opening place on my foot so all the water can drain out. I swear it drains about an 8oz glass there is some blood but not much. My teeth have broken off! My eyes are so bad and I am a musician and I could not play because my fingers were cramping or I am out of breath I love life and this is tuff for me. hate this water weight does anyone know anything to help start getting the weight off? All of this is from except Prednisone and Cell-cept at 2000mg and the Prenisone is at 80mg.
http://www.youtube.com/watch...
Please write me at Addicted2H2O@aol.com or here on this site Above is a URL for YouTube watch it I love to when I feel down.
Thanks
Kels

I am glad you are in better spirits today, but your health situation is so serious, I can understand why you would have down times. I have been on CellCept for 5 years, although not as strong a dosage as yours, but I don't think it is causing your fluid retention. If you ever get to reduce or quit the Prednisone, that should help.

I diognise with lupus when i was pregnet. my pregnancy wasn't success.afterwards doctor put me on cellcept and prednisolone and my results are verygood but I gain weight 3stone.Nearly 2 years since i am taking cellcept.