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What now !!??

So, I’ve been on Rebif since 14th February…I’ll never forget this years Valentines day !.. My GGT reading prior to starting was 163, so elevated but I had my gall bladder out on New Years Eve 2011 so they weren’t overly concerned. My first months bloods came back at 263. Not great but nobody seemed unduly concerned even with that. However the hospital nurse practioner rang my GP surgery last week and requested an intermediary test which came back today at 367. So she’s spoken to my consultant who wants me to carry on with the Rebif until I see them next in four weeks when they will repeat the bloods…again…however in the meantime he has requested an appointment for an ultrasound on my abdomen to check what’s going on. Like what ?! The nurse wouldn’t be pressed on why but I have to admit to being a bit worried. Lots of horrible, irrational scenarios whiz zing around my head. Anyone had similar or got any ideas please? Xx

sorry mrs H i have no idea

its good that you have another appointment in 4 weeks

take care of your self

carole x

Hi MrsH,

Sorry I can’t help either. Just wanted to offer my sympathy. Feels like it’s one thing after another sometimes and our brain’s are awful at imagining the worst!

Hope it turns out to be something and nothing.

Take care.

Hi anon Thanks…I don’t know if this indicates anything but the nurse did say that it is only the GGT that is elevated. All of the other enzymes are completely fine ?

Just wanted to send you a ((((hug)))). Sorry can’t add any advice

Hi, when I started Rebif my ALT level was about 15 but by the time I was on 44 it had gone up to 192. My neuro stopped it for one month and then started agin but only up to 22 - my ALT started to increase rapidly again. The decision was taken to stop completely. My alt levels eventually went back to normal, but it did take about 3/4 months. Apparently (according to my ms nurse anyway) this raised liver enzyme problem happens with Rebif and some people just can’t take it - just my luck to be one of them! Hope you get sorted x

I had raised ALT on beterferon and I swapped to avonax which is 1 injection a week and my liver function is fine now. I think the beterferon 1b just didn’t suit and 1a does

Thanks everyone. If I’m being honest with myself, I think my fears are irrational because of the circumstances surrounding my Mothers death. I need to belt up and get a grip!! It’s just a reaction to the Rebif and a scan to make absolute sure. Xx

Good luck MrsH. Goodness you’ve had a rotten time, and it’s natural to be worried. Hopefully it’s a reaction to the rebif, and you can swap to something else. Take care x

Hopefully this is nothing to worry about and is just your medical people taking care of you in the way they should and in the way you deserve. I hope you get sorted very soon Catherine! Teresa xx

Thanks hunny and Teresa. Xx

Date for the ultrasound is 6th and then I see the consultant on the 10th. Yikes, it’s getting closer. I thought I would start an anti inflammatory diet to help my liver…found out that incidentally, it’s recommended for MS so I’ve got to get a result one way or another !! I definitely feel less nauseous but haven’t noticed any other miraculous improvements yet !! But then I’ve only been doing it for a week !! Xx