I am curious about CellCept

[Bara]

Hello again. I am interested in finding out how well CellCept is tolerated. Is it now preferred over Cytoxin when there is kidney involvement? Is there a time period involved for treatment as in taking Cytoxin? What would be the time frame involved? What about Plaquenil or high dose DHEA? I had chemo from 1995-97 with Cytoxin. I was in remission until recently. My protein number has increased. I would like to know more about the newer drugs used for treatment now. Any comments from lupus patients concerning this would be appreciated.
Many thanks,
Bara

[marietta27]

Hi Bara,

I can tell you that for me, when I was on 3000 mg/day down to 1500 mg/day I had really bad diarrhea every day and night and some black "stools", also, nausea and an aversion to food and smells. When it was lowered to 1500 mg/day, the diarrhea stopped. When it was lowered to 1000/day, the nausea stopped. I'm waiting to hear from others who may have been on it longer (me: since Mar '05). I can't really address the other meds for you, although I don't think plaquenil worked for me in the past. I've taken DHEA when I've been in remission, but not high dosages. I've been put on prednisone quite a few times ... and it is rough.
Hang in there ... let me know if you'd like more info from me.
Smiles, marietta27

[Bara]

I really appreciate the input. I have an appt tomorrow and really felt like I was walking into it blind. I'm not sure if I am at the point where I will be put on CellCept yet, but I certainly am appreciative of knowing about the side affects - it sounds gruesome at the high dosage. Mercy, I sometimes wonder if all of this other 'little' diseases that they diagnose us with aren't really just other tenacles of lupus. My fingers and nails tend to get purplish and I get cold hands easily. When I talk to other women (who do not have lupus) about the cold hands thing, they some times agree that they have it, too. I read somewhere that it is a biological thing. Women tend to focus their body heat on their core (because due to our biological structure we may have a fetus) and draw the heat away from our appendages if necessary. It could explain at least why we are prone to do this. Anyway, it really helps to know that others share our plight and that we are able to support each other. Thanks again for writing. style_emoticons/<#EMO_DIR#>/shakehands.gif

[raggedyann1]

Bara,

Many members here have done very well with cellcept once their stomachs adjusted to it. Do a search of the medications forum (that is where I moved your post to) key words cellcept. You will also find the links to the recent research. My understanding of the recent research was that cellcept was found as effective as cytoxan for treating lupus nephritis.

DHEA is used to help patients reduce the amount of steroids they are taking. It is not used for treating lupus that is attacking your internal organs. It is a male hormone that some patients with lupus do not make enough of on their own. According to Dr .Wallace in The Lupus Book 3rd edition DHEA has a role in treating mild to moderate lupus. Especially in patients with cognitive dysfunction and fatigue. He does NOT mean cns lupus. Dr. Wallace was one of the researchers in using DHEA in lupus patients. There is a current discussion of DHEA in the medications forum and Clare T provided a couple of links.

Plaquenil is standard treatment for treating lupus. However plaquenil alone is not effective against internal organ involvement. It is used along with immune suppressing drugs for treating lupus. It can help slow the progression of lupus. Normally takes 2-3 months for it to start working and 6-9 months to reach full benefit.

I am glad that you are wanting to feel better informed before your appointment tomorrow.

The following link takes you to the treatment information page of this site. If you spend time reading all the different pages you can reach a point of feeling informed in general about lupus.

http://www.uklupus.co.uk/treat.html

Let us know how your appointment goes.

Take care,
Karen

[Bara]

Thanks so much Karen!

[Clare.T]

Hello Bara
I'm writing just from what I have read and with general comments in case they are any use and for what they are worth hwich mightn't be all that much.

I have never heard of anybody being put on such a high dose of cellcept to start with, or anybody being started straight away on cellcept without having had any other form of treatment, or some other treatment being added. That's just facts in my experience : I have no means of knowing if this is fairly usual or what the justification might be in any particular circumstances.


It's a general good rule to start medicines slowly and built up to a therapeutic dose. This gives the body time to get used to it and to avoid unpleasant side effects that might put people off taking it and also makes it much easier to treat any potentially serious side effects.
Of course sometimes there is a crisis that needs immediate treatment, very often in lupus with Prednisone to get inflammation down as fast as possible, then the long term meds which take some time to kick in.

Plaquenil is the first oral therapy and mainstay of lupus treatment whatever other additional drugs are needed. Often people stop taking it because it doesn't seem to be doing much good but it's more that it isn't enough. It has very many remarkable properties.
Multi -therapy is very common these days - fine tuned mixes of drugs so as to get the maximum benefit with the minumum risk of side effects. Each drug has a different way of working and people respond better to some than to others so you have a better chance of getting the disease under control as fast as possible.

Of course the aim has to be to get the maximim benefit with the minimum of medication. Normally the doctor would be explaining the patient's situation clearly, outlining a treatment plan with the options, hoped for results, pros and cons so the doctor and patient are making treatment decisions together.

Very often people stay on Plaquenil to help avoid disease recurrence.

My USA lupus doctor doesn't think that DHEA has any disease modifying role and doesn't prescribe it. Apart from its use in reducing Prednisone and correcting deficiencies which can't be a bad thing, the most that has therapeutically been said about it is that it increases a general sense of well being. I have seen no reference by top lupologists to any other role in treating lupus: the known side effects and unknown serious long term side effects have to be taken into account, just as with any drug.

From what I can gather, cellcept has a role above imuran and as an option to cytoxan. I don't think the possible long term side effects are as well known as the older immunosuppressants like Imuran but I heard a specialist comment the other day that the risks of untreated or inadequately treated disease are very well known.

I don't know what level of medical care you can access Bara, but you don't seem to be getting much guidance.
You are doing well to inform yourself as fully as possible - I would want to know exactly what my kidney situation is to help me make up my mind what treatment options I have.

Wishing you the best

Clare

[lazylegs]

Cell Cept was added for me when the cocktail of drugs I was taking were no longer effective. It took 6 weeks to kick in. I started with 500 mgs to make sure I could tolerate it and minimize the side effects. Presently I am on 3000 mgs. The main side effects I have had are gastrointestinal. I am the exact opposite from Marietta, I tend towards constipation. I would discuss all the options.

Take care,
Lazylegs

[barefut]

My two cents:

I started on my full dose of Cellcept in April without any side effects worth mentioning. I was told I could be on it for up to three years for my scleroderma.

Good luck to you.
Be well,
Barefut

[chantal]

Hi style_emoticons/<#EMO_DIR#>/smile.gif i was put on cellcept a few months ago, and for me i was way too sick and couldnt stay on it so had to stop, now im trying something new on wednesday so i hope that works out style_emoticons/<#EMO_DIR#>/hehe.gif

[ami42]

Hi Chantal, please keep us posted on what you end up taking. Cellcept's been a recent discussion between my Rheum Dr. and myself.

Luv,
Ami

[chantal]

<div class='quotetop'>QUOTE(ami42 @ Jun 27 2006, 07:09 AM) Quoted post</div><div class='quotemain'>
Hi Chantal, please keep us posted on what you end up taking. Cellcept's been a recent discussion between my Rheum Dr. and myself.

Luv,
Ami
[/b][/quote]

Hi Ami, even thou cellcept didnt work for me it does work for many people, i am pretty lucky i tolerate many kinds of medications very easy but for cellcept it was a very bad experience, i just started a medication called methotrexate its a shot once a week and its pretty much just a low dose chemo, i was told i was going to be pretty sick off of it, ive only had my first shot so far but it went fine style_emoticons/<#EMO_DIR#>/hehe.gif
let me know what u decide to take, good luck!~

[mandynor]

Hello

I have currently been on cell cept for about three months...with no bad side effects that i've noticed. this was after 6 months of cytoxan, which did not achieve what my rheumy was hoping for. I also have tried methotrexte, which was horrible to me....i couldn't eat, and was nauseous all the time.
I think it's interesting how we all react differently to all these different drugs...everybody's body is different, and what works for one may not for another. I'll have been on 2000 mg of cell cept for three months by the next visit with my rheumy, which is the time frame she gives the dosage to be effective. so far my DNA antibodies have steadily been going down...yippy! hopefully this is the one that works for me....and i can get off these stupid steroids! still stuck at 36mg of medrol....anyways...good luck to all! oh...i should mention, i have lupus nephritis...

peace,
mandy

[granola]

ANOTHER LUPUS NEPHRITIS REPLY I used cytoxan for 6 months and now cell cept for 1 year. 3 months into the cell cept (after the cytoxan) I lost a ton of hair, but that has now come back. No other side effects except I can't move the weight that the prednisone put on. I'm off that for 3 months now. So far numbers are pretty contant, I take 500mg twice a day, so not too high of a dose. An interesting thing (may not be related) but living in Michigan there are misquitoes! this year they have avoided me, if one does bite it never itches just a red dot appears, HOW STRANGE. Is the cytoxan and cellcept giving off vibes that even bugs won't bite?? Just some extra info that is funny. But for me cell cept is GREAT. Best wishes to everyone, granola