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Thread: Headaches

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    Question Headaches

    So I've been on Cellcept for about a month now, and while I feel generally better than when taking the cyclophosphamide, I am suffering from almost daily headaches.

    I have several concerns - is Cellcept not working for me and am I having a flare? Is it increased cranial pressure mentioned before by Sangye, or even worse the brain infection that Cellcept makes you vulnerable to?
    If Cellcept isn't working for me, what else is there to try? I've already discovered Imuran/Azathioprine doesn't work and don't want to be on cyclo forever.

    I have a clinic appt on Tues so will find out more then, but I had to get these thoughts down.

    Thanks for listening

    Luce

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    Hi Luce,
    Sorry to hear that Cellcept does not seem to suit you, It worked very well for me. Before I changed onto it, I was taking Cyclosporin which is one of the alternatives. However, I was still having the occasional flare up on this.
    I don't associate headache with Wegener's flare ups unless it is sinus related, so it might be worth mentioning Cyclosporin to your specialist. Another alternative (the one I take) is Myfortic. This is a slow release version of Cellcept.

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    Thanks Jack, I will certainly ask about cyclosporin if alternatives are needed. I have heard about Myfortic also, maybe that would work for me.

    The headaches aren't particularly debilitating, just annoying and make everything a bit foggy. Feels like my head is full of cotton wool if that makes sense.

    I've not had any sinus involvement to date so hopefully it is just a side effect of the Cellcept rather than a sign of a flare.

    Apart from the headaches I love Cellcept, but I also felt great on Imuran even though it caused a big flare up.

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    hi luce if you remember we started on cellcept the same day.as yet i've had no noticable side effects but alternatively i don't feel any better.i'm on 2x500 mgs a day so maybe the dosage needs increasing.
    john

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    In terms of feeling better I'm not so sick in my stomach and do have more energy than before. Also the uncomfortableness I felt when passing urine has eased considerably and it generally feels healthier 'down there' (sorry guys). I'm also liking the foods and drinks that the cyclo turned me against - for example I went completely off coca-cola but can now drink the occasional glass.

    I'm on 1500mg daily (x1 500mg tablet and x1 250mg capsule in the morning and again in the evening).

    There could always be other reasons for the headaches - I'm on quite a high dose of blood pressure pills and it could be that my BP has dropped and the dosage has taken my BP too low.

    Hopefully I'll get some answers on Tuesday, although I'm still only seeing renal doctors and not a rheumatologist.

  6. #6
    Doug Guest

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    Quote Originally Posted by Luce View Post
    ....Also the uncomfortableness I felt when passing urine has eased considerably and it generally feels healthier 'down there' (sorry guys)....
    If you don't talk specifically about your "down there", I won't talk specifically about my "down there"! Ha!

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    Agreed Doug! Swiftly moving on....

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    Luce, I don't think headaches are a typical side effect of Cellcept. I'm very prone to headaches and didn't get them with CC at all. I'd place my bet on your bp--either the bp or the bp drug. Are you on any diuretics?

    Don't worry about the brain complication from the CC (PML)--you'd be having other symptoms if that were the case. It causes demyelination of your brain, so symptoms like losing muscle control, increasing muscle weakness, vision problems, etc... are what you'd notice. You'd have more than headaches.

    Also, I doubt that it's an increased intracranial pressure thing. Those symptoms usually come on pretty fast and you're just not gonna miss it. But there are cases of slow-progressing increased pressure, so it can't be ruled out entirely.

    Is the CC giving you diarrhea? That was pretty much the only side effect I had--it's quite common. If so, it might be throwing off your bp meds and/or electrolytes.

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    Thank you for the reassurance Sangye, you returned just in time!

    I'm not on diuretics, just something called Candesartan for the BP. The dose has been steadily increased over the last few months as we weren't seeing an improvement, but I've been on the same dose for last couple of months. So if it is BP I can only assume mine has naturally dropped and the meds are reducing it even further, or it's leapt even higher.

    I had quite a few upset stomachs in the first couple of weeks of switching to CC but that has eased off now.

    I'm just fed up having to take paracetamol every day to clear my head.

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    Luce, be very careful about taking paracetamol (acetaminophen/Tylenol) so often. It's terribly hard on your liver. This has been well-known since it was first licensed, but just the past couple weeks it's getting the bad press it deserves. Very occasional use is not a problem. Anything approaching regular use is extremely dangerous and can cause liver damage.

    Your all-over, cotton-head types of headaches are common with extended use of painkillers, even Tylenol. If not the Tylenol, it sounds like a "liver headache." Are your eyelids puffy? Feel like you're retaining water? Are you irritable? Those would all go along with a liver-based headache. (It doesn't mean your liver is damaged, just could be irritated)

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