cellcept discussion?

[marietta27]

Hello all!

I'd like to find out how much Cellcept other people are taking and if it's divided up day/night ... and your experiences in general with it. Also, has anyone taken it when flaring up without any another drug? If so, did it start to work within a short period of time?

I?m currently taking Cellcept .. never have done so before.
I began it in March ?05 during a hospital stay ? so I don?t know what the dosage was. I was also on prednisone (doc was using both to get me under control until cellcept clicked in) ? I was tapering off the prednisone until Oct ?05. I see in my calendar that I wrote that as of May ?05 I was on Cellcept at 3000mg/day and then as of
Aug ?05, on 2000mg/day. The diarrhea was very , very bad from the start (Mar ?05) and I was nauseated most of the time. Finally in Sept ?05 the Cellcept was lowered to 1500 mg/day and the diarrhea stopped, and the nausea lessened. In April ?06, the Cellcept was lowered to 1000 mg/day and the nausea stopped. I take it all at once, at night.

My doctor, who is new to using Cellcept, actually wants me to go off it ( he worries about my being more vulnerable to infection), but he says if a flareup started once I were to stop the Cellcept , he would put me back on prednisone ? to me that?s **** on earth ? so I don?t want to do it. Cellcept must be taken on an empty stomach (consume nothing 2 hours before taking it, and nothing 1 more hour after taking it) so the day winds up revolving around the medication ?. which is depressing. One of the things that has gotten me through the years is allowing myself to forget as often as possible, that I?m dealing with disease (meditation also ?. which I did long before I got sick) , so I find that the Cellcept regimen, especially when I was splitting the dosage into am and pm, drags me down. I?m tempted to go off it, as the doc wants, but prednisone looming on the horizon keeps me from it.

In the past, besides the prednisone, I have been on leukeran, plaquenil and imuran. I don?t think the plaq worked for me, and the chemo (on prednisone at the same time) was rough, but I?m a little tempted to try plaq again instead of the Cellcept. That?s why I?m asking around to see what other people?s experiences are on it.

Thanks and best wishes to you all!



marietta27

[I edited it for you marietta style_emoticons/<#EMO_DIR#>/smile.gif ]

[Linda_L]

Hi, I've been on Cellcept about a year and my doctor is talking of stopping it..Like you I have mixed feelings. I take it in a divided dose (1500mg a day..take 1000mg mid morning and 500mg at night). I take it on an emptyish stomach! Basically I try to follow the rules but on some days my stomach just isn't empty long enough to do it! Also, I have to work which means that I can't always take medication bang on time or eat when I want! I read the drug company data who said that taking it with some foods may affect absorption a little but as the evidence was a bit inconclusive I decided in the course of things it probably wouldn't make that much difference if I didn't follow the rules all the time. Fortunately I have never had any side effects that I am aware of or that I can definately say are due to that but I started at 500mg and built up to 1500mg over a few months.

[hoperachel]

hi there,
i was first put on cellcept when i got the dx of vasculitis after having a skin biopsy because of a rash on my legs.
when i first started taking cellcept i got conjuntivis and throat infection. was felling very tierd aching in a lot of pain with joints i was also off balance was very pale looking and drained. dont know if that was sle or the medication. probably a mixture of both.
at first i also had a number of steriod injections over a 6 month period they were very good but i found i felt alot worse when they wore off.
cant go and volunteer at a local child care setting like i was doing anymore as i was picking up wot was going round like infections etc. also too unwell to go there at the moment not been back there for a year. its a shame i loved helping out there went i felt up to it.
ive been on and off cellcept for about 6 months due to it lowering my wbc too much.
first of all i started on 1000mg but my wbc dropped too low for level doc wanted it at eventually after being monitored which is still taking place i am back on cellcept.
im only on a very low dose at the moment 500mg just so my body can get used to it. been coping on cellcept for about a month after an other month if everything is still ok doc wants to up cellcept to 1000mg daily. i also take plaquenil 400mg and some others but they are the main meds i have for sle.

[lazylegs]

CellCept does make you more susceptible to infection. I have been on it for 2 years and haven't had any major problems fortunately.

My dosage is 3000 mgs. It gets split 3 times a day so it is easier on the stomach. It is a regimin. I have to plan my meal times to the meds. I was already on other drugs and it took about 6 weeks to kick in. The doc had me start on a low dose and work up to minimize the side effects.

The directions from the pharmacy are different than what you are saying. The sheet says to be taken 1 hour before a meal or 2 hours after a meal. You might check that out with the pharmacist. It is much easier to follow than what you are doing. The key thing is does the Cell Cept work for you?

When confronted with the choice of which drug to taper first, my doctor has chosen the prednisone. He thinks the long term side effects could be more dangerous for me since I have been on it so long.

Take care,
Lazylegs

[barefut]

I started my full dose of Cellcept in April. I take 1000mg morning and 1000mg at night. I have tolerated it very well with no side effects to speak of.

I was wondering what the max dose is because I was thinking of asking for an increase and I see that some of you are on up to 3000mg/day. I don't want to push my luck tho' and I've been told by Cellcept vetrans that I should give it more time - at least 6 months from the first full dose. And you're right, if having to take it 3x a day, that would surely mess with meals!

Good luck to you in sorting out your meds. I hope everything works out for the best for you. Try not to get discouraged by it all.

Be well,
Barefut

[jamiecox76]

I have been on cellcept since jan 2004, I started on 500 and increased to 2,000 mg. My lupus is pretty advance and my labs are always off the charts, I am impatient and eat and take all 2,000 at once and have found it to be just as effective. I also take 10-20 mg a day of plaquinel which decreases the minor aches and headaches of lupus. I found it to be awsome, but I noticed super high yeast in my body, constantly yeast infections and thresh, but use tri-lac a natural enzyme as needed to keep me normal, I usually get diarrhea when my yeast levels are maxing out, so then I take the tri lac. I also noticed milk doesn't mix well with cellcept for me, gives me the worst gas. One time I tried to take a little more cellcept than my Dr. prescibed and my legs iched really bad, so do what you must that's my experience.

style_emoticons/<#EMO_DIR#>/cloud9.gif

jamie

[Clare.T]

Hi Jamie

I wonder if you meant to say you take 10-20mgs Prednisone, not Plaquenil ?

Cheers
Clare