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Luce
07-12-2009, 08:02 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, 08:48 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, 09:19 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, 02:08 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, 04:05 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.

Doug
07-13-2009, 04:53 AM
....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! :D

Luce
07-13-2009, 07:06 AM
Agreed Doug! Swiftly moving on....

Sangye
07-13-2009, 11:46 AM
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.

Luce
07-14-2009, 02:25 AM
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.

Sangye
07-14-2009, 02:59 AM
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)

Jack
07-14-2009, 03:44 AM
Anything approaching regular use is extremely dangerous and can cause liver damage.
Ooo-Err! I'll have to look into that. I've been taking quite a lot recently. Since Ibuprofen and Asprin are out too, it doesn't leave much. I'm usually in quite a bit of pain and don't want to move onto any of the "heavyweight" solutions yet.

Luce
07-14-2009, 04:17 AM
Thank you for the advice, I'm really not taking paracetamol very often - only when I'm at work and no more than x2 500mg pills a day.

However, the 'liver headache' you mention could possibly have a cause behind it. I was a bit naughty nearly two weeks ago and drank a few glasses of cider. Do you think my liver is still upset by this? I wouldn't have dreamed of drinking while on the cyclo but thought that as CC is less aggressive I could have the odd one.

Perhaps not, eh?

Sangye
07-14-2009, 04:37 AM
When you average your paracetamol intake over the course of 1-2 weeks, how much does it come out to per day? It really doesn't take much to mess with the liver. Particularly having been on cyclo, which is so hard on the liver. All these drugs are, actually. Even though you're no longer on the cyclo, it hasn't been detoxified from the liver. It's part of why we're all in such bad shape-- no way to thoroughly detox, as you could following cancer chemo.

Luce
07-14-2009, 05:23 AM
I'd say I've taken 10 pills (16 in a pack) from the pack I bought two weeks ago. So we're talking less than 500mg a day over the last 14 days.

I thought paracetamol was fairly safe as when I was in hospital I would be offered it on every drug round - most of the time I declined because I wasn't in any pain.
Do you not think my stupid intake of alcohol had anything to do with this?

Sangye
07-14-2009, 05:41 AM
LOL... I think your "stupid intake of alcohol" + the paracetamol + the cyclo (past, but still present) + whatever other liver irritants might be there might be the problem. I don't know for sure, of course. Problems with the bp drug must be ruled out first.

This isn't necessarily liver irritation at a clinical level (meaning liver function tests would show abnormalities). You can have subclinical liver irritation and have lots of symptoms. Migraines are good example--normal blood work, terrible symptoms, all liver.

Luce
07-14-2009, 06:50 AM
Thank you again, your advice is invaluable and had given me both the ticking off I deserve for pushing my luck and a very good lesson in over the counter drugs.

We shall see what my BP reads tomorrow....

Luce
07-15-2009, 03:11 AM
Wooo, what an excellent clinic appointment today! I saw a very nice Scottish consultant who I remember briefly from the time I spent in hospital but have never spoken to. She was great and spoke to me like a person, it probably helped that she had good news for me. My ANCA is down to 12 which I'm very happy about, it's always been a reliable marker for me and showed that CellCept is doing it's job. Kidney function is very good, as is liver (phew!) and pair this with last week's news that my lungs have nearly completely healed from the initial damage - I'm in good shape!
My BP was 117/89 which is much better for me, at one point I was 180/112! We're also dropping the pred to 7.5mg which I'm pleased about, I've never felt any ill effects from tapering so it is a welcome drop.

As for the headaches she wasn't too sure, best guess is I'm still getting used to CellCept but as they're not pounding migraines we're going to wait and see.

In the meantime I will refrain from knocking back the cider and will only reach for the paracetamol if the headache is particularly bad. I think I'll also be reaching for the phone at the same time as I was told to call if they get considerably worse.

So to conclude, if all I have is a mild headache then I'm doing pretty well!

Doug
07-15-2009, 04:57 AM
Wooo, what an excellent clinic appointment today! ....
So to conclude, if all I have is a mild headache then I'm doing pretty well!

Congratulations, Luce! It looks like you are well on the path to remission! It has been that long ago you had your doubts, as I recall! If you can't have cider, you might try a carrot with your bunny. They are very sensitive, sympathetic critters, as you know. :):):):) plus (: )

Sangye
07-15-2009, 05:51 AM
Congratulations on all that great news, Luce! I'm so happy for you! :D

Luce
07-15-2009, 06:51 AM
Thanks guys - I'm certainly up and down in my feelings towards wegs and the doctors I see. Can't drag me down today I'm afraid though!

Thanks again for the friendly ear and although I'd love to enjoy a carrot with my bunny, somehow I don't think I'd get my full share. Bunny doesn't share food!
Equally I don't share my cider with her either...

It's been a good lesson for me however in my 'new normal'.