Short Lived responder to Urso

[Jo_Br]

I fell I have not been here for ages. I was away on my hols for a fortnight, Granny care has been pretty full on since.

My last visit to Addenbrookes confirmed the Anti-GP 210 marked a more progressive journey but support and treatment would be the same. While there had usual blood tests on the day, which by the way I have changed by asking to have them done locally at my GP's. This is because the letter that came through on a very rare good day, rocked me a lot and also I have to wait for next appt to discuss. This next appt they can be sat there waiting so I get the news face to face and any worries can be dealt with.

I went off track a little there, the letter said that at my next appointment second line treatment would be discussed with regards to the latest blood. Turned overleaf to see ALP's back up, ALT's previously normal have gone high and bilirubin back on the up. My ALP's have always been very high but were coming down and once the Urso was increased to the correct dosage for my weight in June I was expecting even better drops, I really did not expect it.

I have been in quite a lot of ache and pain in my liver, new to me this fortnight are the xanthelasma (fatty liver deposits) Oh what joy!!

I was a bit dubious expecting to be prescribed Ocaliva (Obtecholic acid) as it can cause itching (Pruritis) and can increase the itch. But this week I was contacted by my former hepatologist, the one who has retired early and moved me to Addenbrookes before she did. She wanted a catch-up and is keeping me on her books, back working as it's apparently been a bit upside down with locums and livers need specialists.

She had had a chat with George Mells at Addenbrookes and he will be trying me on Fenofibrate, she said Ocaliva would be unwise because of my itch and even though it is not always the case that is the plan.

I have a few questions tonight/this morning up with the itch at 3 am and feeling the need for info from fellow PBCers if you do know.

So I also have been prescribed Gabapentin 300mg once a day for 2 weeks, if no issue to increase to twice a day. I know it works for some and not others, looking for those it has worked with. What have been the side effects. Still not tried it as I am up in the night with my Granny and need to her her. The drowsiness warning concerns me, Mary the hep said Jo just try it so George can see if it's going to work so I am starting at end of weekend as my daughter will be about for night care for a couple of days.

How do you take the second one as I stupidly forgot is it two at night or one twice a day?

Anybody on Fenofibrate after non respond to Urso, they did warn me it could happen as being in the group of AMA negative and the markers indicate this, but interested to know of good experience with this new one.

Anybody with xanthelasma any advice would be lovely. It's a vanity thing and hate them already.

[Shulsey]

Not sure what the Fenofibrate is but I take the Ocaliva plus Urso. My hep started me at a low dose of Ocaliva 5mg for one month, now im alternating the 5mg with the 10mg every other day for a month until Im just on the 10mg. I feel doing this has caused my itch to not become increased with the use of Ocaliva. I too took gabapentin with the side effects of passing out after 20 minutes of taking it. I was told to take it with my dinner. But every time I did that, I fell asleep 20 minutes after in my recliner so my night would be over. It did not work well with the things I must do for my youngest daughter before bed. I stopped taking it. How this might help☺️

[butterflyEi]

Hi Jo_Br

I have just been prescribed Gabapentine by the GP but for neurological disorder (peripheral neuropathy). My dose started low 1 tablet three times a day and 8 hours apart. After one week I am to increase the dose to 2 tablets 3 times a day and then next week 3 tablets three times a day basically starting week 300mg final week 900mg but I can tweak the dose as needed so if I am doing well on just 300mg I can stay there. Your chemist should have put a label on the box to say how the doctor has prescribed it. I cannot say as to how it will impact on your sleep for that one tablet as I have also been given sertraline by the hepatologist recently (I think you will know that is an anti depressant) 25mgs a day I am sleeping better but I am still up at night and when I do wake the "itch" is still present but much muted at least to a level I can cope with. If you react as I have done I think you will still wake for Granny and be able to see to her and if it calms your itch it has to be a good thing.

Have you tried the 2%menthol cream? I use it at night now and it does seem to confuse my skin enough for me to return to sleep but I believe your "itch" is much worse than that which I have experienced.

I had xanthelasma years ago. Naughty me I picked at the places until it popped out. It was close to the eye and the medics would not have interfered with them. Once I was on a statin they did not return. Be careful though it depends on where they are you do not want to make yourself sore.

I have read on other sites of others using fenofibrate with some success.

Glad to know that you are being looked after now and I hope soon you will have some peace from the so called itch of PBC.

best wishes

[Jo_Br in reply to butterflyEi]

Hi lovely butterflyEi thanks for all the info. The pharmacy daftly have put take 1 for a fortnight. If no ill effects increase to twice a day. I aim to take one in the evening today but have terrible stomach and bowel today, I have to eat to take my Urso which will set me off again. This is another thing that has been ongoing for two weeks.

Haha I have already been at the xanthelasma too, mine are right at the eyelid/ball edge outer side both sides.

Thanks for all the advice, yes on the 2% cream prescribed the 5% is really amazing but not on prescription.

[emerich]

Hi jo_br

I was put on fenofibrates to lower cholesterol, I had to stop statins because of the effect on my liver. I later found out it was to treat pbc as well. I am allergic to urso so it's the only treatment I'm on for pbc. Seems to be doing the job so far, I've been taking them for around 18 months.

[Jo_Br in reply to emerich]

So glad it's working for you, long may that continue.

[Puddles]

Hi Jo-Br,

I was diagnosed in 2013 and started Urso which brought my LFTs (which were only mildly elevated) back into normal range. All stayed stable for a couple of years and then my LFT's took a sudden jump with no real explanation. After a biopsy to rule out any other disease I was commenced on fenofibrate (as well as Urso), my numbers returned to normal after a few months. I have been on fenofibrate for 2 years now with everything stable to date. No side effects either.

Best of luck

Puddles

[gwillistexas in reply to Puddles]

G'morning. Great news your numbers are stabilized. I had no side effects on Urso until hives popped up. Dr said will try Oclavia. I should know early next week if approved. Best of luck to you.

[Jo_Br in reply to Puddles]

Thank you, mine are high hoping I have the same as you as in successfully lowering them all. Excellent to hear no side effects too.