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barefut

How Many On Cellcept?

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Guest Jennifer

HI there,

I am taking 3 grams of Cellcept a day and I've been on it for 17 months. I also take Procardia, Synthroid, Nexium, Zantac, Reglan, Calcium, Iron and baby aspirin. Hope this helps!

Jennifer

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Hi, My hubby is on 4000mg of cellcept a day. I have not been able to find anyone else on such a high dose. It does not seem to be helping him. He has been on it since June. He is skin score is still rising. He is also on Plaqunil, Nexxum, Folic Acid, aspirin, reglan and an antidepressant.

Lori


Lori

Scleroderma Spouse

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I have been on 2000mg of cellcept for a couple of years now.

Are you sure you want my list? Here it is:

levothyoxin

pain medications

prednisone

nexium twice a day

lotrel

allergra-D

fosamax

doxycycline

clonazipam

cyclobenzaprine

didronel

Rhinocourt

restasis

glycolax

Zegerid

Lunesta on a trial basis for now

Plus numerious vitamins, minerals, etc

 

I also go to a chiropractor, and a massage therapist .

Yep, that's me, a walking drug store. It seems like I am calling my pharmacy every other day. Can't even begin to give you all the other drugs I have tried. Most of the time I feel like a human guinea pig. At one time, I was on huge doses of prednisone, like 20mg for almost 20 years. I just kept gaining and gaining weight until I started doing my own research and told my primary that I wanted to get off. He started me on methotrexate, got violently ill, so he sent me to my rheumatologist for the first time. Best thing I ever did. He put me on immuran and started tapering off the pred. Lost 80# in 6 months. The immuran started not working, so he put me on cellcept. Seems to be working fine so far.

~whirlway

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Hi Barefut

 

I started Cellcept about 3 months ago. I am on 2000mg. I have Lupus with an overlap of limited Scleroderma. I also have APS.

 

I am also taking 10mg Prednisone, 400mg Plaquenil, Lipitor, Vasotec, Procardia XL, Prevacid, Coumadin.

 

I had Rituxin 10 months ago. It really helped with the Lupus. Cellcept is being used instead of more Rituxin. Rheum is also hoping the Cellcept will help with tight skin on my legs and hands from Scleroderma.

 

Sarah

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Guest Jennifer

Lori,

I am sorry to hear about your husband and hope you are doing well. It's a tough position you are in. I was told by my Dr. they don't usually give people over 3 grams. I don't think they have a lot of experience giving higher than 3 from my understanding. Is your husband a big guy? If he has only been on CellCept since June, hang in there because it can take a while to get it to do it's trick. Is he getting worse, or just not appearing to get better? Does he have lung involvement?

Have a good day and take care of you both,

Jennifer

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I'm on 2 g a day of Cell Cept (1g in AM and PM). I also take Procardia, Nexium, Capoten, Lipitor, and baby aspirin.

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Thanks Jennifer

 

He weighted about 170 when he started on it. He now weighs about 150. He is continueing to get worse that is why it has been increased to that. THe dr. is considering cytoxan. He has to have an EMG done Monday to check the muscles before starting the cytoxan. THe dr. did tell us on our last visit that there was no research to support that amount of cellcept. Lungs are still clear at this point.

Thanks

Lori


Lori

Scleroderma Spouse

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Guest Jennifer

Lori,

My DR. told em the same thing, about there not being research to support higher doses of Cellcept. One time, the pharmacy gave me 500mgs instead of 250mgs and I was taking 5000mgs/day instead of 2500, for two weeks (I was 105lbs at the time) and I remember feeling jittery, throwing up and sick feeling in general. It was obviously too much for me, and I was very small at the time. I hope that Cytoxan is the answer for your husband. What Dr. do you all see? I was going to have to try Cytoxan a few months ago and my PFTS were steadily declining for over a year, but then it seemed like all of a sudden my dr did a 180 and was saying "No, stay on Cellcept and see me in 6 months". I felt that was odd, one dr. report stating I'd likely try Cytoxan and the next I was staying on same regime.

It sounds like your husband's in the same boat as me. If you don't mind me asking, what is his DLCO and TVC, and what is his age?

Hugs,

Jennifer

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Guest Anne

Hi

I'm on cellcept now since May - at this point I'm on 1500mg a day, which sounds low now that I hear how much everyone else is on. My doctor. is very conservative and is afraid to give me too much but I'm hoping to go higher to prevent any problems or setbacks.

I'm also on: levoxyl for thyroid, acetylsisteine, calcium, iron, baby aspirin, acidophilus, red yeast rice, prevacid, chlorthalidome, and viagra.

Warm thoughts to all...

Anne

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