Pbc

[janine541]

Had my blood results yesterday as I have to have them every 2 week due to Riferdan

My Alp is 219

And my Alt is 243.

Because they have been higher before I've got to go back to weekly bloods but they dont want them any higher.

Anybody same x

[Hidden]

Hi janineWhen I was put on rifampicin my bloods were very high so I was getting my bloods checked regularly anyway. I remember one time they jumped extremely high and they took me off all medication except ones specific to my liver and put me back on steroids, my itch went back to horrendous and I insisted to get put back on the rifampicin. I have been taking it for few years now . I was getting blood checks there weekly, now I’m back to monthly ( thank goodness, they have to fight to get blood now 🥲). X

[janine541 in reply to Hidden]

Thankyou

[butterflyEi]

I am on rifampicin, luckily my numbers have been quite stable. I only have an annual check from the specialist even though I am on 300mg twice a day.

[Hidden in reply to butterflyEi]

That’s a lot, I’m 2 * 150mg and had to push for it to go up to that . X

[butterflyEi in reply to Hidden]

Yes I think it is as well but it's that or more invasive treatment.

[Hidden in reply to butterflyEi]

As long as it works , that’s my motto now 😁

[janine541 in reply to Hidden]

I agree .. I'm praying my bloods stable . My consultant has said list for transplant

[janine541 in reply to Hidden]

To be fair my nurse has said we can go up to 450 twice a day if needed so long as my bloods are ok

[Hidden in reply to janine541]

That’s good,it took some time for it to work and wasn’t overnight but I couldn’t be without them. I was tried on so many different things I was at the end of my tether. The psychological impact from it was more horrendous than the scars I was giving myself from the scratching. There was talk of an experimental procedure if the rifampicin didn’t work but thankfully it did. I still have some itch but bearable. I sleep with a metal spaghetti utensil under my pillow which I use to scratch during the night 😁. For me now it’s the nausea I struggle worse with, every day, all day. That and the fatigue off course. Xx

[janine541 in reply to Hidden]

Have you started with nausea since the tablet. I have really bad nausea to the point I carnt eat I also sleep with a scratching stick near to me although with the medication I dont need this anymore.

I had tryed so many different treatments and was going spare with the itch

[Hidden in reply to janine541]

I have suffered from nausea before I was diagnosed.

[janine541 in reply to Hidden]

Are ok. Have they said what it is. Uve got to go for an endoscopy

[Hidden in reply to janine541]

I just put down to my illnesses, I have had 2 endoscopy’s in 7 years. First one diagnosed me with celiac and the second was to check how it was doing . They reduced my immune suppressants to see if it would stop the nausea but it didn’t so they put them back up as my lfts were going up. I get anti nausea tablets ,tried a few over the years, some don’t work at all and others have worked for a while then not. I have times when it isn’t as bad but at moment it is constant . X

[Biddyb]

OMG you are struggling let’s hope they settle, take care, our coffee date will help. Some good responses on here to ease your mind. Barbara

[janine541 in reply to Biddyb]

It will certainly