Cellcept

[Guest guest]

Debby

has been taking 750 mg to 1000 mg for the past 2 1/2 months. She did have an upset stomach but she now takes 500 mg in the morning and then eats breakfast and has her 20 mg of pred and 75 mg of ranitidine. She then takes 500 mg of Cellcept in the afternoon and 75 mg of ranitidine at bedtime. Dividing the doses and increasing her ranitidine seems to have helped her. I'm not sure but her Dr. told us that the doses she takes have the same effect as 40 mg of pred and 2000 mg of Cellcept would have on an adult. I hope that this helps.

Lori ('s Mom)

[Guest guest]

Debby,

They started me on 2000 mg's from the start. I had been on Imuran and had a

terrible time with that. I've done very well on this dose from the start so

I'm not a lot of help. Hang in there. I hope it gets better.

[Guest guest]

Debby,

Did your doctor test your stool for blood? If not do not play around with a

stool that is red/orange. I do not mean to scare you but you may need to

check into this now.

When I had my bleed the first stool was black and tarry looking, but after

being in the hospital over night I had a red/maroon looking stool and was

still bleeding. HGB dropped another 2 points after this maroon stool. Do

not blow it off. It could be very serious.

[Guest guest]

It was my understanding that brown light tanish colored stools were an

indication that your billirubin was up.

[Guest guest]

Debby,

I'm so sorry you aren't feeling well. I don't have any info for you I just wanted to let you know I was thinking of you. Take care!

Bethanne

Tex Pueschel <tdcc2000@...> wrote:

I would like to know, for those who have or are taking cellcept, how long did it take to get used to the entire amount of the medication? My doctor wants me on 2000 mg/d, but I cannot get past 1500. I began the 2000 this week, but am so sick today, I cannot even go to church or visit my mom at the hospital. Thanks....debby

[Guest guest]

Thanks Lori. What is ranitidine? I have been taking 1000 in the morning and 1000 at night. I have to eat something with it because it hurts my stomach if I don't. I just take it with a glass of mile. Then I eat my breakfast and take the prednisone. I am only on 15 mg prednisone. (I believe I wrote and told someone I was on 20.....I forgot that I am on 15 now) Anyway, this is the way I take them. I also have to take them before getting ready for work! All of this is done before 6:00 AM each morning. THen, I try to take them by 8:00 PM each night.

The worst thing now is that I have been going to the bathroom so many times each day! This is crazy, I know, but my stools are dark red/orange. I know that if they are tarry it is blood, but I don't know. When I brought this up to my doctor last visit, about them being dark orange in color, she told me she just didn't want them to be red. So, now I don't what to do. But the worst is that my urine is turning very dark again, and I know that is trouble.

I guess I am going to ahve to call her on Wednesday when she is in the office.

debby

Re: [ ] Cellcept

Debby has been taking 750 mg to 1000 mg for the past 2 1/2 months. She did have an upset stomach but she now takes 500 mg in the morning and then eats breakfast and has her 20 mg of pred and 75 mg of ranitidine. She then takes 500 mg of Cellcept in the afternoon and 75 mg of ranitidine at bedtime. Dividing the doses and increasing her ranitidine seems to have helped her. I'm not sure but her Dr. told us that the doses she takes have the same effect as 40 mg of pred and 2000 mg of Cellcept would have on an adult. I hope that this helps.Lori ('s Mom)

[Guest guest]

Hi

I've been on 2000mg Cellcept for about 16months. I didn't have too

many problems at first, 'only' the wanting to go to the loo far to

any times a day, then about 10 months ago it started to make me

nauseas and sick. I changed to having 50mg in the morning, 50

sometime during the day, and 1000mg at bed time. This eased it a bit

but I was still very sick with it, so now I take domperidon, an anti

nausea drug. It controls it most of the time, but I still have my

bad patches, when it only takes the edge off the nausea. I still

feel sick in the mornings before the domperidon kicks in.

My doc is considering switching me back to imuran in 3 months as my

labs will have been normal for 9months, I'm a little dubious as it

didn't work before, but we shall see.

I am told I have to take cellcept on and empty stomach, 2hrs after

food and an hr before food, is that how you take it?

Hope your ok, hang in there

age 22 London UK

[Guest guest]

Thanks Patti...I will keep a check on that. When I was dx, I was having that problem. Now it is beginning to make sense. I guess maybe I was sicker than I thought!

debby

Re: [ ] Cellcept

Debby has been taking 750 mg to 1000 mg for the past 2 1/2 months. She did have an upset stomach but she now takes 500 mg in the morning and then eats breakfast and has her 20 mg of pred and 75 mg of ranitidine. She then takes 500 mg of Cellcept in the afternoon and 75 mg of ranitidine at bedtime. Dividing the doses and increasing her ranitidine seems to have helped her. I'm not sure but her Dr. told us that the doses she takes have the same effect as 40 mg of pred and 2000 mg of Cellcept would have on an adult. I hope that this helps.Lori ('s Mom)

[Guest guest]

Thanks ...I am hoping that I can tolerate this. So far, I have not been as sick as I was on Imuran, but still cannot get to the dosage that she wants...debby

Re: [ ] Cellcept

Debby,They started me on 2000 mg's from the start. I had been on Imuran and had a terrible time with that. I've done very well on this dose from the start so I'm not a lot of help. Hang in there. I hope it gets better.

[Guest guest]

Thanks....I am calling on Wed!

debby

Re: [ ] Cellcept

Debby,Did your doctor test your stool for blood? If not do not play around with a stool that is red/orange. I do not mean to scare you but you may need to check into this now.When I had my bleed the first stool was black and tarry looking, but after being in the hospital over night I had a red/maroon looking stool and was still bleeding. HGB dropped another 2 points after this maroon stool. Do not blow it off. It could be very serious.

[Guest guest]

I am on cellcept....not doing the best on it, but doing it. Will get my labs on friday afternoon. Had the vampire hit me up for blood today! Hope the labs are still as they were..good.

debby

[ ] CellCept

Has anybody had a lot of experience with Cellcept? What about CellCept and another immunosuppresant in place of Prednisone?JacquellynTx-Sept.21,2002

[Guest guest]

Hi

I've been on cellcept for about 18 months, I'm also on pred.

Its working magic for me as imuran (along with pred) was not strong

enough

Cellcept has its ups and downs, but altogether I think its worth it!!

If you want to ask me some more detailed questions e-mail me

directly on ticklemelui@..., as i'm not reading the digests

properly as I'm so busy at the moment, so may miss any questions you

have. But i'll be very happy to answer any specific questions for

you.

Best wishes

( AIH aug 200, age 22, London UK)

[Guest guest]

Jacquellyn,

I've been on CellCept now for almost a year. I love it. Much easiler for me

to take than the Imuran. I am also on prednisone now down to 5 mg's daily.

I do not have the nausea I had on Imuran. LFT's doing great now. Being

worked up for UTI and Kidney stone. Have to have IVP next week but as far as

AIH goes, all is doing well. I have not had a transplant. Was evaluated by

transplant surgeon RE: enlarged spleen about 6 months ago, however since

starting on Beta blocker that seems much better also and plattelet count is

now up from 27 to 67. That's the highest it's been in almost a year. Hope

this info helps.

[Guest guest]

Elaine,

I was started on Imuran about 3 months into the prednisone use. I guess at

that point I was probably down to 40mg's maybe 35mg's. Took Imuran for 2

miserable months and felt horrible. Nausea, wishing I could vomit, headaches

generally just feeling bad. I told Hepatologist that I would no longer take

the Imuran and asked about Cellcept. ( I had researched it on the net). He

said he had several patients who could not tolerate Imuran and he put them on

Cellcept and they did fine. This was the case for me. I guess my prednisone

dose was probably 35mg-30 mg's. They tapered me down 5 mg's every 3 months

if labs continued to be OK. When they would elevate slightly they would stop

the taper and bump it up 5 mg's until labs returned to normal. I started out

on Cellcept 500mg's 2 tablets twice a day from day one and have been on that

dose for a year and a half. Going from 15 mg's to 2.5 mg's of prednisone has

taken a long time and my LFT's are slightly elevated at 2.5 mg's. It looks

like for me 5 mg's is all I can maintain long term. Because of side effects

from prednisone he would like to stop it or at least keep it to a minimum

dose.

I love Cellcept and do so well on it and it seems to work just as well or

better for me than the Imuran. Hope this info helps.

[Guest guest]

Hello

I have been on Cellcept for two years now. After about two months of

imuran and pred we found that the Imuran was not strong enough for

us to drop my pred to anything lower than 15mgs. So i was switched

to 2gs cellcept. It has worked a treat and i am now only on 2mgs

pred.

Unlike some I suffer from various side effects from cellcept, this

may be because i am on quite a high dose. They make me nauseus and

have messed up my stomach, but saying that I don't mind putting up

with it as long as we keep lowering the pred.

I think Cellcept is worth a try, the major drawback is it is very

expensive, luckily I am in the UK where we don;t have to pay for our

drugs!

Good luck

AIH aug 2000, Age 23 London UK

[Guest guest]

Elaine,

I take 2000mg per day. I will research my old files and forward some sites

for you. Thanks.

[Guest guest]

Elaine

Yes for the nausea I take a drug called domperidom.. sounds like an

expansive champagne... unfortunately.. its not!

You may not experience any side effects at all, so I wouldn't worry

about them untill you have tried cellcept. You may find, like me,

that you will deal with anything as long as the pred keeps reducing!

Best wishes

> --

>

> Thanks for sharing your experiences with Cellcept. The side

effects don't

> sound good. Do you take anything for the nausea? I really want

to reduce

> the prednisone (and so does my doctor), but don't know if I can

handle the

> side effects if I get them. I do have prescription coverage so

the cost of

> Cellcept is not an issue.

>

> Elaine

[Guest guest]

Terri, I was one of those who could not take either Imuran or cellcept.

They both made me terribly nauseated. I had more success with the cellcept

than the imuran, but finally gave them both up. I couldn't stand the pain,

and my doctor finally believed that I was not doing well with either of

them. She finally put me on 6MP. I have been able to tolerate this

medication. My stomach STILL hurts, but as long as I take my 6MP in the

evening and take the Ultram with it, things are better.

Good luck.

Debby

[ ] cellcept

> Hi! I've been reading the posts alot and have learned alot. Thank

> you for all you do, everyone is special. Tony, your song is

> beautiful.

> Now I have another question, I'm one who cannot take Imuran, so my

> hep doc put me on cellcept. I've been on it since1-25-03, but I've

> started getting nausea again. Has anyone been on this drug and did

> you have any better luck?

> Thanks again for all of you being here.

>

> terri

>

>

>

[Guest guest]

Debby, Thanks for your reply but I'm new to the game and I don't know what 6MP is or Ultram. Is the Ultram taking the place of cellcept or is the 6MP, and the other a stomach medicine?. Sorry to keep asking, but need help in clearification. thanks, terri

tdcc <tdcc2000@...> wrote:

Terri, I was one of those who could not take either Imuran or cellcept.They both made me terribly nauseated. I had more success with the cellceptthan the imuran, but finally gave them both up. I couldn't stand the pain,and my doctor finally believed that I was not doing well with either ofthem. She finally put me on 6MP. I have been able to tolerate thismedication. My stomach STILL hurts, but as long as I take my 6MP in theevening and take the Ultram with it, things are better.Good luck.Debby [ ] cellcept> Hi! I've been reading the posts alot and have learned alot. Thank> you for all you do, everyone is special. Tony, your song is> beautiful.> Now I have another question, I'm one who cannot take Imuran, so my> hep doc put me on cellcept. I've been on it since1-25-03, but I've> started getting nausea again. Has anyone been on this drug and did> you have any better luck?> Thanks again for all of you being here.>> terri>>>

[Guest guest]

Terri, Ultram is a pain medicine. The 6MP is in place of the Cellcept and Imuran. But I still must take the ultram for the stomach pain and aciphex to coat my stomach from the prednisone and 6MP. Sometimes I wonder which is worse, the disease or the medicine???

Debby

[ ] cellcept> Hi! I've been reading the posts alot and have learned alot. Thank> you for all you do, everyone is special. Tony, your song is> beautiful.> Now I have another question, I'm one who cannot take Imuran, so my> hep doc put me on cellcept. I've been on it since1-25-03, but I've> started getting nausea again. Has anyone been on this drug and did> you have any better luck?> Thanks again for all of you being here.>> terri>>>

[Guest guest]

Debby, Thank you for the clearfication. I take it your ok on the 6MP or not if you still need pain medicine? When you were on cellcept did you get sick right away or did it take a little time to build up. When I first started I did ok but now I'm having bouts of nausea and they seem to get worse. Thanks for responding have a good and painless day. terri

tdcc <tdcc2000@...> wrote:

Terri, Ultram is a pain medicine. The 6MP is in place of the Cellcept and Imuran. But I still must take the ultram for the stomach pain and aciphex to coat my stomach from the prednisone and 6MP. Sometimes I wonder which is worse, the disease or the medicine???

Debby

[ ] cellcept> Hi! I've been reading the posts alot and have learned alot. Thank> you for all you do, everyone is special. Tony, your song is> beautiful.> Now I have another question, I'm one who cannot take Imuran, so my> hep doc put me on cellcept. I've been on it since1-25-03, but I've> started getting nausea again. Has anyone been on this drug and did> you have any better luck?> Thanks again for all of you being here.>> terri>>>

[Guest guest]

I could not tolerate Immuran and could tolerte Cellcept, however

it never qiut cut it. each time i reduced my pred my levels would elevate. now i've started 6mp. i have my fingers crossed, and i'll let you know.

Pat NY

[Guest guest]

Pat,

My Hepatologist is looking into the same thing. I do well on Cellcept and love it but my LFT's get very close to normal but never seem to totally go down. He is now having me do some genetic test that monitors something which can make normal levels of Imuran have a toxic effect. There is only 1 lab in the USA that does this and it is strictly a GI Lab. This lab is in California. I will have the blood drawn tomorrow and the results will take about 2 weeks. I'll let you know the outcome.

[Guest guest]

I really find it fascinating that your symptoms changed with your geographical

location. Is there any explanation for that? What have your doctors said about

it.

Joanna Hoelscher

[Guest guest]

Changes in temperature and barometric pressure can greatly affect some people

more than others. It makes some sense that things change as locations change.

Celeste

----- Original Message -----

I really find it fascinating that your symptoms changed with your geographical

location. Is there any explanation for that? What have your doctors said about

it. Joanna Hoelscher