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Discussion Starter · #1 ·
I saw my Rhumy today, and he wants another 24 hour and kidney sonogram...just went through this 3 months ago and all was well.

I get blood and urine every 6 weeks, I had it done early June and saw Dr today, RBC and protien in urine are up again..Creatine Urea (??) is low.

So round we go again, I call the lab tomorrow to set it all up.

I am on 1500 mg of CellCept and 3 mg of Prendisone...and now it seems there are studies that long term use of CellCept can cause alsheimer like syndrome that is not reversable, but can be stopped if caught and cellcept is discontinued. He is not worried, but wanted me to be aware of the risk...of course the other options for treatment are no fun either...

Pooh..I'm down in the dumps tonight!

Thanks for letting me vent - Stephanie
 

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I'd be down in the dumps too. I hope the new round of kidney tests go well this time just like last time.

I have not heard about the Alzheimer like syndrome being associated with Cellcept use. That would be disturbing to anyone on that drug - especially since we all have our brain fog moments thanks to this disease anyways it would really make us start to worry...

Take care and please let us know how things go!

(((hugs)))
 

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Hey (((((Stephanie)))))

I haven't heard of this cellcept side-effect the doc told you about and I couldn't find any info on it online either... Perhaps I didn't look in the right places, or maybe information on it hasn't been published yet or... I'd be down in the dumps too after that sort of warning from the doc about a med.... :( Did he say anything else about it? Did he say whether it's a new warning or something he himself has noticed or...?

Anyhow...I hope your kidney tests go brilliantly this time!! :)

Do let us know how you get on,

Zoi
 

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Hi Stephanie,

In researching the Cell Cept issue I found the warning by the FDA.

See:

http://www.fda.gov/cder/drug/early_comm/mycophenolate.htm

The same warning was issued for Rituxan in December 2006. Those of us on Rituxan had a big decision to make of whether to continue or not. Presently I am on both and will be discussing this with my rheumy. I am interested to see if my white matter lesions appeared before or after beginning Cell Cept.

My thoughts will be with you.

Take care,
Lazylegs
 

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Ah! I think I found what your doc was talking about...

This alzheimer like syndrome he mentioned, did he say anything that sounded like PML or progressive multifocal encephalopathy? That is the only warning that's out at the moment with regards to cellcept from what I can see. A very very small number of patients on cellcept got PML and Roche (the company that makes cellcept) notified the FDA (as it is supposed to in the case of new side-effects however rare) about the isolated cases and issued notification letters to health professionals on May 29th 2008.
The relevant link to the FDA page is:

http://www.fda.gov/Cder/drug/early_comm/mycophenolate.htm

Unfortunately with meds we are often called to weigh the advantages versus the disadvantages and the potential benefits versus the potential harms they may cause us. Prednisone, for example, is one of those meds we love to hate and although it can save lives and reverse major flares with the speed of lightning; it can also cause osteoporosis, weight gain, skin thinning, raise blood sugar and a myriad more side-effects that are potentially harmful.

Cytoxan and rituxan, both potentially life-saving meds in very difficult situations can cause hair thinning, increased chances of infection, lowered immune response to infection, slightly increased chances of cancer; the list goes on and on and on. Admittedly it does sound terribly frightening at first; however if one thinks about it a little bit the realization that we make choices like that every single day comes pretty fast. Aspirin, ibuprofen, red meat, milk, mobic, most things around us really have potentially scary "side-effects" (potentially being the key word here!).... Granted, PML sounds scary and docs don't usually warn patients about the incredibly few deaths caused by internal bleeding in patients taking aspirin or other such meds so when they do warn us about something it's petrifying... Do remember though that drug manufacturers are required to list ALL side-effects, however rare (even if only two people in 10 million have had them) by law, hence the incredibly long side-effect lists in every bottle of motrin out there...

I hope what I wrote didn't scare you any more or make things any worse, it's just that the way I see it most things around us have pluses and minuses; the point being to carefully think about them and make an informed decision as to what is best in your case. Yes, PML sounds scary but then again so do lupus-related kidney problems. The risk of anyone getting PML from cellcept is fractional whilst the risk of you getting worse if you stop cellcept may be more than fractional etc.

Of course, the best thing to do here might be to go back to your doc with your concerns as he will be able to talk you through what has happened with cellcept and pml and to discuss any concerns you may have because of this.

Hope you get to the bottom of this soon!

Zoi
 

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good luck with those tests - heck I hate 24 hr urine tests, peeing in a pot for 24 hours is an over rated past time.

As for the side effects - well, you gotta do what you gotta do. Personally I think my risks from my lupus are more real than the tiny risk of getting some lesions from the treatment.

heck, what's a few more lesions between friends hahaha.

lotsa love

raglet
 

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Hey Stephanie and (((((((((hugs))))))))) to you,

I think anyone has a right to feel down at times and all that happening plus talking about possible side effects of drugs is quite enough.

I can't add anything to what's already been said but just wanted to send hugs, virtual chocs and all things good...

Katharine
 

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Srry your feeling rough stephanie and hope your test results go well.

Good Luck

Cassie :)
 

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Discussion Starter · #9 ·
Thank you all so much for the kind thoughts and replies.

Lazy & Zoi, the article is indeed the one my Rhumy referenced. I agree that the side effects are something we have to deal with and make the bed educated decision we can about what is worth the risk.

My real anxiety stems from the kidney issues, as I am already (and have been) on fairly agressive drugs having been through Metho, arava and one other that escapes my mind at the moment, before going on the cellcept.

If the kidney's become seriously involved or continue to act up on a regular basis I may have to go to the stronger Chemo drugs and I have a serious issue as I already had cancer and Lymphoma is a big concern for us...

Raglet:
I agree about peeing in a bottle...I have my son and Granchildren in the house now and I have to lable it so noone thinks its Apple Juice for the kids...LOL...YUK!!! I use a skull and crossbones halloween decoration on it (have to trash that one after)!

Well Thanks again, I'll let you all know how it turns out!

Stephanie
 

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Hello Stephanie,

I am just wanting to send :there: hugs to you.. to let you know I am thinking of you... Good luck with the tests...

Love Penny
 

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((((((Sam))))))

Gosh you are really going through the mill right now! I did laugh at the labelling the pee bottles so it's not mistaken for apple juice....ewwww. :eek::lol:

I am on 1000mg of Cellcept and I agree with Raglet, at the moment the benefits for me outweigh the risks. I think everyone of us has to make a decision with the meds we take. I remember being terrified to start Plaquinel, now I would never be without it.

Good luck with those test results, let us know how you get on.

Sending you hugs and flowers to cheer you up. :posy::hugbetter:

Lots'a'luv,

Pam xxx
 
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