Anyone on here had a rising bilirubin and managed to get it done with treatment or other measures?

My bilirubin amongst the other LFTS apart from thankfully the Albumin have been rising since I stopped Urso last August and I am now worried that if I dont get started on something soon my liver may take a turn for the worse. I am not usually such a worrier its just I have finally gotten round to setting a date for our wedding next August and want to be fit and healthy for it. Ironically I feel ok apart from the itch being slightly worse these last few weeks but still no-where near as bad as it has been on occassions since I was diagnosed with PBC back in 2002. Any replies be greatly appreciated. x

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  • Sorry that was supposed to read DOWN re the bilirubin!

  • Why did you stop the Ursodiol? Did you have stomach problems from it. I think it would help with the elevated bile and itching.

  • Hi Magnolia I went off it as I had a really horrendous yr with the itch so much so that I was put forward for transplant assessment due to intractible itch. I have suffered with the itch since 2001 (yr before was diagnosed) but from Aug/Sept 2011 -Aug 2012 it was back to the extreme levels it was the yr before I was diagnosed. I was due to go for assessment in Oct 2012 but by the August I was so far through with the itch totally ruining my quality of life that( having read about people who were on a trial for a drug similar to Urso called Obeticholic Acid in which lot of the patients in the trial some who never had itch complained of itch since starting the drug trial) this got me thinking maybe the Urso was making my itch worse and did remember that when my consultant upped my dose by 250mgs to see if that would help the itch it actually made it worse so I decided to stop taking it to see what would happen. Within 2 weeks of stopping it I felt much better as the itch became very mild much more tolerable and well enough controlled by taking the Questran Light which have also always been on. Unfortunately though as said LFTS are on the rise trouble is feel am in a bit of a catch 22 as if go back on it the itch may return to intolerable levels and may have to look at having a transplant because of it but if stay off it my liver may go into failure anyway and may have to have a transplant anyway. I did ask my consultant about going back on it when I seen him in Dec but he told me that if I went back on it it would ongly slow the progression of the PBC by a yr or two tops and that if I felt better off it then probably better to stay off it. I was shocked by this at the time but agreed with him. Trouble is now that Bilirubin rising too am getting worried as I am getting married next year and want to stay aas healthy as possible and obviously like everyone on here am sure I do not want to have to have a transplant. Hope all that makes sense.

  • It makes sense Littlemoe, I know some people have to have the transplants because they itch so badly, they actually are tearing their skin.

    When my dr. upped my dosage of the ursodiol to 1500, it made my stomach too upset. Plus I losing hair, but I was seeing large amounts of it in the sink on the larger dose. You are in a catch 22 position. I'm sorry your having so much trouble. I think there's other meds that help the itch, maybe they should try some of them. If it weren't so bad the lotion I use would help you. The name of it is Sarna. Praying you'll get better!

  • Thanks Magnolia thankfully itch is not too bad and fairly well controlled during day with the Questran Light wich I take for it. I tried all other drugs for itch even ones that were being newly trialed in England but none of them worked for me but that was when was on high dose of Urso and itch was totally horrendous. Will see what consultant says at my next apt go from there. Ta again for reply. Bfn. x

  • Hi. I am taking methotrexate as the Ursofalk didn't look like it was working when I started it back in April. I am still taking the Ursofalk with the methotrexate and bilirubin has come down from 76 to 26. Maybe ask if you can try the methotrexate by itself as I think that is what has helped me. However, it could have been the Ursofalk even though my keels did go up when I was on it by itself.

    Skippy Downunder

  • Hi Skippy ta for reply. Yes I have read about Methotrexate being used alongside Urso so will ask consultant about it. My boss actually was on Methotrexate for her Arthritis last yr and had awful side effects from it. Have you had any problems taking it? Do you know what stage in relation to PBC you are? What are keels?

  • Sorry keels should have said levels - have had no side effects. I am late stage 2 early stage 3 as per liver biopsy in April. Am going to see specialist on Thursday (see him once a month) but didn't need to see him last month as he was happy with results. Will let you know if anything has come down or gone up then. I am probably a bit obsessed with the bilirubin levels as I read all these things about raised levels being a bad prognosis when I was first diagnosed. Also my eyes were really yellow at the time and now they look much whiter. Where do you live? I am in Australia.

    Skippy

  • Hi Skippy thanks for that I live in N.Ireland. Great to talk to people for all over the world. We are actually having a few lovely days at the minute I envy you all that beautiful sunshine and blue skies! Take care of yourself and yes think I am like you getting too obsessed about this rising bilirubin. Probably will settle down again as do feel ok ironically. Hopefully will see consultant sooner rather than later and he will allay my fears. Ta again. Bfn.

  • Hiya Littlemo.

    This may be another option, have you tried taking milk thistle daily to see what happens?

    The Obeticholic acid that you have mentioned is apparently another component of bile acid, the deoxycholic acid which I think I am right in saying urso is supposed to be is another one as there are a few components in bile. It is thought the one that urso synthetically replaces is a kinder one to the system, that is why it is used.

    My way of thinking then is that is probably why patients on the trial with the Obeticholic acid started experiencing the itch whilst taking.

    I know I've tried gobbling all the daily urso in one sitting - breakfast - earlier this year but I was finding that a couple hours later I started to feel and then be itchy, something I never really havae during the day (I'm a night time itcher). So I put it down to larger dose of the urso swimming thru my system.

    I have been taking milk thistle along with urso and it's made no difference to the itch that for me subsided over time and I just get it at night, some nights badly, others not so. I did experiment with the milk thistle last yr in mth prior to the LFTs being retaken and then stopped. Got good results using but then I had slight incline the next time when not taking so I resumed Dec last yr and then got good results start of this yr and also May.

    My bilirubin has been normal every since my first abnormal LFT back early 2010 so I can't say for sure there with regards to the milk thistle but if it helps LFTs and they remain at a certain level it must mean the liver is coping sufficiently well currently and that's prob why the bilirubin seems pretty stable still.

    I'd certainly give milk thistle a go if I was in your shoes, at the end of the day regardless you've nothing to lose. If you at least see a slight change there is that hope that the next LFTs there is another change for the better. Also it won't or shouldn't cause you any further problems with the itch as it has never altered anything for me so however you are at present you'll not get any worse there.

    I have read about methotrexate and it being trialed alongside urso but I think reading more about methotrexate in recent weeks, it can affect the liver but I do think that alongside urso you are taking, you are going to get a bit of protection there as opposed to taking methotrexate alone now you have a biliary condition that affects the liver.

  • Hi Peridot thanks for reply. I have tried Milk Thistle quite a few times over the yrs but sadly made no difference to my LFTS. I know what you are saying re the making of the Obeticholic but I think the same applies to the Urso that there is some ingredient in it that I am maybe allergic to which is why it makes my itch worse. Going to speak with my GP this week see if can get my appointment with consultant brought forward so can discuss all with him before my liver suffers any more damage.

    PBC is a very strange disease as I say apart from the itch starting to rear its head a bit more during the day as well as night (night time always worse) I feel grand but yet the LFTS totally up the creak weird!

  • Hello again. Another thought, have you ever tried having a different brand of the urso? It does come in liquid forn, capsules as well as the chalky white tablets. I have noticed that even with the chalky white things there are differences with the fillers so just maybe it might have been the brand/type you were taking that you reckoned caused the itching to get worse? One of the side-effects of urso can be itching so I suppose any reactoin can be possible. As I've stated previously on this site, I think with majority of us being left with the itch even whilst on urso, could be a case of what urso is cancelling out, it is also causing if you know what I mean now.

    I don't know about anyone else on this site but we seem to hear such a lot of research and trials that are going into the fatigue element of PBC. I know at present I'm fortunate that I do not suffer from fatigue as I did back in 2010, the year of diagnose but I think I am speaking for all us itchers out there in that if we could rid ourselves of the itch somehow it would be far better as we could easily then put up with fatigue much better. I get tired on certain days (like today) due to lack of sleep previous night due to having a night of bad itching and being restless and awake. Now if I could rid myself of the itch then I'd not mind just lying relatively still in bed and resting if I find I cannot sleep during the night as I'd burn a lot less calories than I reckon I do at present with fidgeting about most of the night due to the itch.

  • Thanks Peridot yes if I do go back on it will definately ask about a different brand of it or even get the liquid form would imagine definately be less additives in that so thanks again. Re the fatigue I can cope ok with this by just taking a power nap on the days when I need to and totally agree it is very much more worse after a bad night with the itch when have had very little or poor quality of sleep. Also agree lot more research needed to get something to alleviate the itch. If had the choice def choose the fatigue over the itch any day and I have both! Am not saying that the fatigue is not bad just that with adjustments in lifestyle it can be managed whereas you try all these things- prescribed drugs and various measures of which I have tried many over the yrs but none take itch away completely, for me anyway. But hey not complaining as at moment it is tolerable and fairly well controlled during the day at least with the questran and other measures I have found useful over the yrs. Will keep you all posted to how I get on. Bfn.`x

  • I use to use milk thistle, and just don't remember it for all the other supplements I take. I had asked my GI dr. if it would hurt me and he said no. I think I read somewhere that some dr. wanted his patients on milk thistle before surgery, to help cleanse their liver before hand.

  • Can you have normal LFTS and be in stage 1 or 2 my liver funtions are now normal after a yr on urso and consultant said the mri of my liver is normal,i am still confused thoe as my first consultant sais he think's i'm early stages and now my new consultant said he wouldn't be able to stage me without a biopsy.He didn't say that i needed one so i will take it that i don't need one but surely if my LFTS are now back to normal dosen't that mean i am early stages,i dont know what consultant to believe.Also my liver functions started to improve on there own before going on the urso and that was just from a few life changes,Any advise would be appreciated

  • I am afraid I cannot advise as after 12yrs of having PBC I still dont know what stage I am at! I am from N.Ireland and consultants here dont seem to do staging. They go more on LFTS and how you are. I have never had a biopsy nor do I want one if am honest. I dont think it benefits us to know what stage we are at so I just basically go on how I feel. Try not to worry just get on with living.

  • thank you littlemo thank you for your advise.I saw my GP today and he said the same,i am lucky as he has 3 of us at the surgery with PBC so he knows a fair bit about the disease he said because my LFTS are all back to normal i probably am in early stages,he also said that he would not advise any one to have a biopsy unless there was a very good reason for it as it can cause harm.This is a very strange disease as at the mo i don't really feel very well at all yet all my liver functions are good,i am how ever still waiting for result's on other diseases.I agree i do need to try and stop worrying as it only makes thing's worse,i must admit i do get upset when i think i am only 46 and feel so ill most of the time but then i think that there is a lot of people out there a lot worse of than me.

  • Hi Lainey I know what you mean re the LFTS not reflecting how rubbish you feel I have found this the case many times over the yrs when I felt really bad particularily when my itch was at its worst the LFTS would be stable. Now ironically at the minute when am feeling not so bad my LFTS are up the creak. I do remember at the start when first found out had PBC the itch was horrendous the fatigue was quite bad (compounded by lack of sleep at night due to the itch I feel) and had lot of joint pains. However once I was on the Urso for few weeks the fatigue and joint pains did subside but sadly for me the itch remained. It is hard to get your head around it all I was only 31 when I was diagnosed am 42 (soon be 43) now and I have got used to living with it and do just get on w;ith life as as you say we could have wo rse things. Bfn take care things will get better in time. x

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