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Hello

Anyone out there taking Cellcept?

I was wondering if you guys had a chance to read this article:
www.rocheusa.com/products/cellcept/

It talks about how cellcept users have reported Progressive Multifocal Leukoencephalopathy (PML)?

I'm on cellcept now, and I'm concerned? Can anyone share any input? Any signs that we should be aware in case this virus starts progressing etc?

Any advice is appreciated.
Thx
 

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Hi,

I suspect that the same is true of all immunosupressants - ie cytoxan, azathioprine , cyclosporin etc.

There are other viruses that can also re activate such as CMV too.

These are things that can happen and will occasionally, but should you worry about them or be especially vigilantly 'on the look out' ? Personally I don't think so.

ANY signs of illness that happen should be taken seriously and you should seek medical advice. Someone on immunosupressants should always take fever seriously and should be having regular blood checks.

Worrying about what has not yet happened but might potentially in the future is a waste of time and effort and will only cause you increased stress. A cliche I know, but the proverbial bus may well run you over first.

Doctors don't take the decision to start immunosupression lightly. Mostly it is essential if you are to retain organ function or even life itself, so the potential risk that you might get sick from a virus is always less risk than the certainty of organ failure or death if you weren't taking them. I know that the idea is scary, and if it happens to you it is devestating, but it really is a risk worth taking for the most part.

Cheers,

X C X
 

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bundy
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hi i take cellcept for a kidney transplant i see my doctor on the 29oct and i will pass this info on to him yours bundy
 

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Hi,

I have to admit I wasn't thrilled when I heard the warning for both Cell Cept and Rituxan. I did decide to continue with both because they gave me a quality of life that I had not achieved without them. The percentage of people that have had a problem is so low that I felt the odds were in my favor.

Take care,
Lazylegs
 

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Hey there,
First of all let’s clear some things up here; the occurrence of PML or progressive multifocal encephalopathy in cellcept patients is incredibly rare. What happened with the report you read on Roche’s website was that as soon as a very small number of patients on cellcept were diagnosed with progressive multifocal encephalopathy, Roche notified the FDA (that is the protocol in the case of any previously unknown side-effects in meds) about those isolated patients. The FDA began an investigation and issued notification letters to health professionals regarding the occurrence of PML in a very small number of cellcept patients. The relevant link is:

http://www.fda.gov/Cder/drug/early_c...ophenolate.htm

Your post does bring up an interesting issue though and this is an issue all of us have had to face at one point or another. When one is ill and meds are required to treat that illness there is always a ‘potential benefits vs potential harms’ discussion that affects one’s decision regarding the taking of those meds. All meds, without exception, have very scary potential side-effects listed in their instructions leaflets; take aspirin and internal bleeding for example, or the new generation non-steroidal anti-inflammatory meds and their cardiovascular side-effects, or immunossupressants and cancer; the list is endless and oh so scary…

However two things I’ve found incredibly important to remember in situations like this are that first of all drug manufacturers are required to list ALL side-effects, however rare (even if only two people in 50 million have had them) by law, hence the incredibly long side-effects lists on every aspirin and ibuprofen bottle out there and that when talking about side-effects and meds one must bear in mind that we are talking about possibilities (sometimes incredibly rare and unusual possibilities) rather than a certain course of events.

Cytoxan, rituxan, oral pred, iv pred, cellcept, imuran, they all have potential side-effects and so deciding to take them or not is often a matter of weighing any possible side effects they may cause against the likely “side-effects” of one’s lupus. Is the potential hair thinning, increased chances of infection, lowered immune system, slightly elevated chance of cancer et cetera a risk worth taking (if one is to undergo treatment with cytoxan for example)? Has a vital organ or a person’s quality of life been affected and the med in question might help the situation? What would the likely effects of the organ involvement or loss of quality of life be versus the likely side-effects of the med et cetera et cetera?

I know PML sounds incredibly scary (I was temporarily stunned when I first heard about it personally) and that there usually aren’t warning letters out there talking about the 1-2 possible deaths caused by aspirin related ulcer bleeds etc so when one does come across a warning like that it can be rather petrifying. Most med related things (most things in life really if one thinks about it) have their pluses and their minuses and all one can really do is to try and find out as much as possible about a situation, think about it carefully and then make an informed decision. If I’m not mistaken you have lupus nephritis. The way I see it is yep, the possibility of getting PML is no fun but then again the possibility of your lupus nephritis worsening is no fun either. Cellcept is generally incredibly successful in controlling lupus-related kidney problems. The risk of you, or anyone for that matter, getting PML from cellcept is fractional whilst the risk of your kidneys getting worse if you stop cellcept may be more than fractional etc.

I’ve been on both rituxan and cellcept (both have been linked to PML) and the way my doc put it when he talked to me about PML was that I could either let lupus and aps kill me for sure, or take the truly miniscule risk of being the next patient to be one-in-a-million and get PML. The choice, in my case, was very clear: an almost non-existent risk of PML (and it is almost non-existent if one thinks about how many people have taken cellcept worldwide over the ten years it's been on the market and how many of those have gotten PML!!) versus a very real risk of death from lupus and aps..

It should also be noted that the very few patients that have gotten PML whilst on cellcept (and this is true for the PML patients on rituxan too) were the ones that had recently been taking or were still taking multiple immunossupressants (i.e. cytoxan or cyclosporine or imuran and then cellcept or rituxan on top).

PML is associated with something called the JC virus, a virus that is incredibly common in the general population (up to 90% of humans have it) but that lies dormant when one’s immune system is up and running. When the immune system is severely suppressed then the JC virus might be “activated” thus causing PML. PML is almost always fatal and there really is no treatment for it, although the discontinuation of immunossupressants may result in the immune system returning to full function fast enough for the body to be able to have a fighting chance against PML.

Leaving the grim prognosis of PML aside for a second, there is a more realistic side I think to all this. The way my doc had explained it was that there is a limit to immunossupression within each person after which the JC virus might be activated (IF one has it!! Emphasis on that IF as that's not even a certainty!! And bear in mind that if one doesn’t have the JC virus then one cannot get PML) and the patient might get PML; and multiple immunossupressants might contribute to pushing one over that limit more than any one immunossupressant (like the cellcept you are on) can.

Of course, the fact that this is a very personal decision remains and no one can tell you what you should or should not do. You alone must decide on what is or isn’t best for you in this case. If you are still concerned you could always relay your concerns to your doc and he will be able to discuss this further with you as well as present you with any alternative options you may have.

Hope you’re doing well,

Zoi
 

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Hello blue

You have had some wonderfully comprehensive and first hand responses to which I can add nothing except to emphasise that in the case of Rituxan both the reported cases were people who were already very immunosuppressed and had been for a long time.

This article refers to Rituxan but I am sure it is the same for Cellcept.

http://www.hss.edu/professional-conditions_15265.asp

Talk it over with your doctors who can reassure you from their own experience of using it.

Good Luck! :)

Clare
 
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