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I was diagnosed with SLE four years ago and have been taking Methotrexate 25mg injection per week, prednisolone, plaquenil as well as many other meds. The steroids were starting to cause a lot of bad side effects so I was tapered down to a low dose which subsequently flared my Lupus, Sjorgens and Raynauds.

My doctor started me on Cellcept a few weeks ago and I am having serious stomach issues with it. I feel as though I have had a gastric bypass as my stomach is so inflamed and I cannot manage more than a few mouthfulls of food. In the last few days I have also started vomitting, although I feel much better after doing so. I am persisting with the cellcept as I know I have to stop my immune system working overtime.

The nurse who gave me my education before taking cellcept told me I MUST take the cellcept with food. However, I have noticed one or two people on these boards have advised otherwise.

I am also extremely tired with the cellcept and am falling asleep many times during the day.

Any advise would be gratefully received.
 

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Hi:

I take cell cept 2000mg a day. I have found that I must take this on an empty stomach in the morning. I take it and wait about an hour then I can only drink tea or coacoa. After that I am fine. The afternoon dose I must also take on a reasonably empty stomach ( at least 2 hoiurs after eating and one hour before dinner.

I suffered from all kinds of issues when I started taking this until I found what worked for me. I would vomit, get terrible headaches, be over sleepy if I took it too early or too late.

Each of us are different and we have to play with schedules, I went through this when I started the med, and again after each dosage increase.

I know that there are some people who cannot tolerate the medication no matter what they do.

If you are committed to giving this medication a fair shake, you need to try all of the different times and combinations (early/late...empty/full stomach...with certain liquids...etc).

Do not hesitate to discuss these issues with your doctor, they must be made aware of what is happening as these may be signs of a more sxerious side effect or drug interaction. I was a daily pest for the first three weeks until I found what worked.

This medicince has been very effective for me for almost 3 years, although I may need to make some changes in medication, I would strongly recommend this as a steroid and toxic sparing alternative, if you can tolerate it well.

Please feel free to PM me if I can be of any further assistance.

Good luck - and don't forget to discuss this with your Dr as soon as possible.

Stephanie
 

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Hi Donna,

The prescribing instructions say to take Cell Cept 1 hour before or 2 hours after a meal. However a few people on the site can only tolerate Cell Cept with food. I am not sure why the nurse instructed you take it with food. Have you had prior gastric problems? I would contact your doctor and let him/her know the problem you are having. He may suggest you making some adjustments.

Take care,
Lazylegs
 

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Donna,
I do not know anything about this medicine but wanted to wish you the best in getting some relief.
 

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Hi Donna,

I am sorry to hear you are having such a time taking cellcept. I take 1500mg,
two pills in the morning ( alarm gets me up at 8:00 I take two pills and drink lots of water and go back to sleep. I tale the last pill around nine oclock at night on an empry stomach with lots of water. I did experience some nausea but quickly got used to it.

I started on metho and prednisone with no result except I couldn't breath. Doc switched me to immuran and tapered very slowly the prednisone with mixed results.
My sed-rate still stayed in the 80's and 90's. Doc then started me on cellcept and it has dropped my sed-rate into the high 30's, low 40's. I think this is the best I have felt in twelve years.

I know that different meds work differently with how you take it and how you react to the side effects. I have had few side effects with the cellcept.

I hope you will give it a chance.

With best wishes for better health, TAB
 

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Hi,

I want to say, to hope you feel better very soon.

I also, had severe gastritis with Cellcept. I was put on Prilosec to protect, my stomach. It has made a great difference. I no longer have nausea or stomach pain.

Best Wishes,
Sandy
 

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steph, i only started a few weeks ago on this was on Aza before that for 4 yrs, well i take mine either just before brekie or aftwer depends how i feel, i am more sleepy and have had tummy cramps and hair is going mad again just like when i started the az drug, but i am not being sick with this one as yet, but ive only just gone up to 750mg twice a day. going up every two weeks


maybe if it carries on go see your gp, but it does say if this or that happens in the leaflet to seek help, other than that maybe you have just got ride the other symtoms out, as youre body will get use to it


only you know that good luck xx Lin
 

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HI, I have been on Cellcept for about 5 months. I started out 1000 mg. a day, now increased to 2000mg. My instructions also are to take this med. on an empty stomach at least 1 hour before or two hours after eating. I also have had severe acid reflex for several years and take Previcid, so this may be why I am tolerating the Cellcept. The problem I am having are swelling lymph nodes in under arm area. Went to my MD and checked out and was told they could not detect any lumps. Wish I could have stayed on Imuran, but this elevated my liver enzymes to 250. My Rheumy tells me not to read the info that comes with the precripts., as it can cause undo worry. Hope you are feeling somewhat better, also it does say drink lots of water with Cellcept. Take care, Rose
 

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Discussion Starter #9
First of all I want to thank you all for the very quick responses which have been such a help.

I spoke to the nurse today who instructed me on how to take cellcept and she said that nowhere does it indicate to take the drug without food. OBVIOUSLY she is covering her back and just sticking to her guns as she also said for me to try taking the drug on an empty stomach and see what happens.

I already tried this before I spoke to her on the strength of your advise. It is a lot more tolerable as I am not being sick, but I am still just having liquidised soup and plenty fluids. My stomach feels very full and uncomfortable.

I am determined to stick with the cellcept as my SLE is in the worst flare it has ever been and I need to get the medication into my system. I am going to try various combinations of times and hope it works.

Once again, thankyou for the responses and any advise on how to ease the stomach upsets while I get used to the cellcept would be very gratefully received.
 
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