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Hi
When I was given the positive results for Lupus on Tuesday I was put on Cellcept. Well I have got the tablets but I haven't started taking them yet as I have a night out planned tonight with my niece and I didn't want to spoil the night if I had side effects and I wanted to have drink or two as well. At the end of the day I have managed for two and half years so a few days won't hurt:lol:

I just wondered if anyone else takes them and if they have a positive effect. I am on prednisone but that is going to be reduced over the next few weeks thank goodness as I am just getting bigger and bigger right now :(

Also on the info sheet included with the tablets it does not mention if you can have a drink with them or not I have got a night planned with friends in a couple of weeks and not sure if I can have a glass of wine or not, does anyone know please? I don't mean a big boozing session just one or two glasses.

Many thanks
Jules
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Hi:

I was wondering are you on anything else besides steroids? Has you Dr tried Plaquenil? Do you have organ involvement?

I am on cellcept, 2000mg a day. Although I had some nausea when i started them, and again each time they increased the dose, I haven't had any other side effects.

I myself found that I must take them on an empty stomach, then after an hour just have a cup of tea or hot chocolate. After that i can eat if I am hungry. My afternoon dose I must take at least 2 hours after eating or 3 hours before eating or I get quite nauseaus...practice makes perfect, so I now know what my body can tolerate.

They say you shouldn't drink when on this med, however I have an occasional glass or two of wine and i haven't had any issues. I did discuss it with my rhumy and nephrologist, they both said that as long as I do not overindulge or drink with great frequency it should be OK.

The benefit for me has been great and I only had to take a burst of steroids before my last increase in dosage (from 1000mg to 2000mg). I definately feel better on this medication than I have on others. I went through methotrexate, Imuran and Arava before starting on CellCept.

I wish you the best with this med. If you have any questions you can always PM me.

Stephanie
 

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Hi Jules,

Good luck with the Cell Cept. It has been very beneficial for me, hopefully it will be for you also.

Like Stephanie I take mine on an empty stomach an hour before eating. Initially it caused a lot of gas and dizziness but after a couple of weeks my stomach adjusted. Now I have no side effects.

Take care,
Lazylegs
 

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Good luck, ive only been on this one since january,im on 2000mg daily
it did cause me tummy pains, only now im feeling sickly more in the mornings when i get up, but weather thats this drug or the mixture of drugs pass!!
im still on steriods as Azathioprine didnt get me off them so here is hoping.good luck for you too

take care Lin xx
 

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Hi......

Been taking Cell Cept since last October. apart from the normal side effects of feeling a little sick for a few days, I have had no problems.

I did sadly pick up the norvirus while in for steriod infusions in January and was told by the clinic to stop them for a week...

other than that they are brill good luck
 

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Hi Jules,
I have been on Cellcept for 3 years now and have not had any problems with it (I know I just posted a stomach issue post - but it's not related to medication)...anyway the cellcept has worked pretty well for me, I can take it on an empty stomach. Because I have blood sugar issues and can't always wait an hour when I wake up, I asked my rheumy if I could have food with it and she said that is not a problem. I usually doublecheck what my doctors tell me, as they think they know everything - and there are other people who have had stomach issues with it and take it with food. Sorry if this is rambling - not having a good day here. I've asked the alcohol question as well and rheumy and the doctors told me it's fine to have a drink and have a good time - this really surprised me - I think they meant every now and then, quality of life and having fun, that sort of thing. Alcohol can diminish the effects of medication and isn't good for health in general but if it's once in a while and you're not doing it every night it shouldn't be a problem in my opinion. Okay sorry about the rambling I'm off to bed!
Take care.
 

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Hi

I have been on cellcept for 4 years with pred too. the idea was for me to slowly reduce the pred (for obvious reasons) and stay on the cellcept. The doc initially put me on 250 twice a day and said it would take a couple of months for it to get into my system and so kept my dose of pred high. over the months the pred went down and the cellcept went up to 500 twice a day. this is where it is now and my pred is down to 7.5mg (when it gets to 5mg i have a flare). I have always had no side effects with the cellcept, the only time i have stopped it is when i have had doses of cyclophosphamide and rituximab for a few weeks.

As far as other things go, i was always told that i shold never become pregnant on this drug as it could cause abnormalities.

As for drinking. I was put on cellcept before my final year of uni and i asked the question. I was told 'not to excess'. However, I was a little silly and prob did drink more than i should have on rare occasions and although i am not advocating it, i didn't have any problems.

Hope this helps

Nadia
 

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I've been on Cellcept for about 2.5 years. At first it was 3000mg, but then I contracted shingles and my dosage was reduced to 2000mg. Even at the lower dosage, the drug has worked well for me. I've never had severe side effects, but it always seems to do a number on my stomach. It doesn't happen with each dose, but I tend to experience nausea and some stomach pain. Things are a bit worse now that I also have to take iron at the same time as my last Cellcept dose of the day. I should probably try taking it with food.

Regarding your drinking question, I'd recommend checking with your pharmacist before mixing alcohol with your meds. :)
 

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Discussion Starter #9
Hi ya everyone
Sorry for my late reply on this one, I have been having problems with my laptop, well not the laptop but the power cable but now I have got a new one so I don't have to worry for a little gap when my hubby is not glued to his:rotfl:

I don't have any organ involvement or should I say I have not been told that I have so I think that is good news

I have been doing fine on the Celcept, no tummy upsets as such but I am only 500mg a day. I am due to see the consultant on Tuesday so maybe she may increase the does.

I have rang the hospital for the results of my weekly bloods and they are fine so more good news.

Just waiting now for the med to kick in but I know that this can take some time.

Thank you for all your replies

Jules
XXX
 
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