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Cellcept query


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#1 Amanda Thorpe

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Posted 08 December 2008 - 01:47 AM

Hello All

Coming up to holiday I hope you are all doing well and here's an early "Happy Holidays!"

Now to the crux of my post, Cellcept. I have been on it for 14 months now and have always thought I had no side effects, however, I am now wondering if it is causing me frequent debilitating headaches. I, in reluctant agreement with my rheumatologist, am stopping the Cellcept for 3 weeks to see what happens with the headaches.

Has anyone experienced an increase or the start of headaches whilst on Cellcept?

I realise they may be totally unconnected but I'm now desperate to pin the headaches on anything so I can make them go away! :(

If it does turn out to be the Cellcept I will be put on methotrexate, which I know nothing about so in that eventuality guess what my next post will be about!! :lol:

Take care.

Amanda
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#2 Clementine

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Posted 08 December 2008 - 03:39 AM

Amanda,

I am sorry dear, I have not had headaches as a side effect of Cellcept and I've been on it long enough to know if I were. With any medication, I don't think you can ever rule out anything being a side effect, just my opinion.

I hope you can pin point it soon and you feel better.

Clem

#3 janey

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Posted 08 December 2008 - 04:37 AM

Amanda,
Ditto to Clementine's comments. I've been on Cellcept for more than 1.5 years with no headaches or other side effects (that I know of anyway). I hope you do find the cause of the headaches. If it is the cellcept, then I trust you and your rheumatologist find a good replacement. If you have lung issues, please research methotrexate (MTX) before taking it. It's not usually prescribed to people with lung issues.

Big Hugs,
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#4 lizzie

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Posted 08 December 2008 - 09:04 AM

Hi Amanda, I've only been on CellCept 3 months, but have not had increase in headaches. I'm quite a "headachy" person generally, lots of things like paint smells and perfume, sunlight, and being too hot or cold and stormy weather trigger migraine for me, and the dreaded Iloprost ( that I had last week) gives me a nasty headache throughout the treatment. I'm not sure whether to hope that the Cellcept is the cause of your headache , in which case you would no longer have the headaches, or that it isn't in which case you could stay on it but would still have the headache.
Good Luck
Lizzie

#5 Kamlesh

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Posted 08 December 2008 - 01:34 PM

Hi Amanda,
For me Cellcept proved to be life saver. I was on maximum dose for two years and it brought my Scleroderma under control. I had two issues with Cellcept extreme fatigue and low White Blood Count. I had to stop when my WBC went down to 2.5. Now I am without it for over a year and doing well.
Kind regards,

Kamlesh


#6 Amanda Thorpe

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Posted 10 December 2008 - 11:40 AM

Hello All

Thanks for your kind replies even if you have given the wrong answers! :lol:

I suspect that blaming Cellcept may be a long shot :angry: but I am going to go the whole 3 weeks just the same.

Thanks Janey I don't have lung involvement but only found out MTX was bad if you did from this site!

I'll keep you informed.

Thank you one and all. :D

Amanda
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#7 Jetta

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Posted 11 December 2008 - 10:55 AM

Hello, I was on methatrexate for 9 months and got nothing from it, but have been on cellcept for almost 2 years now. I have not had any headache problems from it, but I know for myself coming off of it causes breathing issues for me. Good Luck Jetta