Headaches

**Luce** · 07-12-2009, 09:02 PM

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

**Jack** · 07-12-2009, 09:48 PM

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.

**Luce** · 07-12-2009, 10:19 PM

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.

**crackers** · 07-13-2009, 03:08 AM

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

**Luce** · 07-13-2009, 05:05 AM

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.