Conflicting Advise

Hi All,

Had my appointment with the prof in Newcastle, I'm going on the trials for the bile drugs hopefully in 2-3 months, it was proven from the bile drainage procedure that I endured that my itch is caused by the bile getting into my bloodstream, so it is something in the bile that I produce that causes it.

With the itch like many of you I get little or no sleep and have asked my GP on many occasions for sleeping tablets but she has said they don't prescribe them any more, so I asked the prof for something as I was desperate for a good night instead of getting to the stage where I litterally just flop at the most in opportune times, He did prescribe some and I was absolutely delighted I finally had something that works.

But don't hold your breath folks, went to my GP this morning for a repeat and she refused point blank to give me them stating that within a fortnight I would be addicted and that if I want more I will have to go through the Prof!!!!

Back to square one for me, as you may recall I'm in leeds and the prof is in Newcastle so it won't be a quick process to get some more.

On a different topic I also asked GP for something to ease my menopause symptoms she also refused to give me anything and said I should take it up with Prof, has any of you had HRT or anything else? Any advise would be truly appreciated.


10 Replies

  • Sorry to hear scratty you have little or no support from you GP, have to say I am not surprised, mine is no better! I have been on HRT for 5 years and my consultant knows. It helps with osteoperosis and as I am very low on Vit D, (have just started injections), HRT is needed. Try and ring your consultants secratary and ask him to write to your GP, he will most definatly do that and it will help. Best of luck, let us know how you get on x

  • Like Lisa, i have been using HRT patches for 5 years. My gastro and gp are encouraging me just now to reduce the strength, which I am doing. I am now on half the lowest doze. Feeling yucky and hot just now but hopefully I will be off in another month or so. Unfortunate side effect? Weight gain and body pains getting worse but Im hoping I will get past that. Problems with decision making between gp and consultant is getting all too common with PBC. Good luck and take care :-)

  • Hello.

    I am convinced of recent from reading on here about GPs refusing to prescribe that it is down to money! Things changed in April, GPs apparently got control of budgets, well that is basically it, sometimes try reading something that is extensive (we all know the small print in an insurance document!) and pretty soon you seem to lose what is actually being said!

    I did once read on here some with PBC actually get prescribed something like an antihistamine that doesn't help with the itch but can knock you out so you do sleep during the night. Maybe someone who has used could post on here.

    I'm myself not so sure about HRT. Ever since I heard of it when I was a young girl, oh those were the days, I did say to myself I'd never want to take anything like that. But that is my way of thinking, I was raised that you only take something if you really need it and with regards to the change as I used to hear it being called when I was growing up, a case of you just get on with it. I've never really had any problems with my cycle but I know I am now in what is termed perimenopause, that build-up to when my cycle completely stops.

    I have started to become quite spaced out which is a good thing I suppose as less to bother about but I know when nit should have occurred and ever since I started with the itch in 2010 I noticed that at that particular time it is at its most prevalent which for several days which it is currently.

    I sympathise with you scratty as last night I found myself starting to itch just before 11p.m. and on retiring to be even though I felt tired, I just could not feel comfortable so I went downstairs, propped myself up on the couch and hoped the itch wouldn't resurface until I dropped off to sleep which I did until I woke at 3a.m. and went to bed, dropped off and another night has gone. I find with the itch, if I move about even briefly of an evening, when I do sit/lie down it has temporarily vanished but within 10mins has returned. I have thought for some time that it is due to bloodstream myself with residue bile in it as in a way it figures if the itch comes and goes at random about the body and when one is on the move it's not actually noticeable as such.

    I have read about the trial that you are going to be going on, please keep everyone posted.

    PS Is there any other GPs in that practice where you are as if so have you tried to get their opinion on the tablets you got. In the old practice I was with, you find that some doctors tend to lay off prescriptions, others are prescription happy. The new GP I am with, she is a prescription happy one but she is also a GP who will pack you off to the hospital as she has done with my sister a couple times.

  • Hi all, I am newly diagnosed with PBC (Feb). Based purely on AMA and other tests. Also numerous other symptoms! Just waiting for biopsies to determine stage! I have struggled for 5 yrs+ going through every 'ology clinic' that exists......

    I have been taking Citirizine (in the morning) for the itch and also Piriton (evening) when it's really bad. As the itch keeps me awake most nights!! My immunologist I forms me that you can't overdose. Taking both daily ensures I sleep!!

    Hope this helps xx

  • Hi and welcome.

    Are you from America? Reason asking is when you mention a biopsy.

    I was diagnosed with PBC Dec 2010 after starting with the itch earlier that year. I was fatigued at the time and on checking, my LFTs were abnormal. Those is the only symptons I presented with.

    The GP I saw at the time mentioned a biopsy long before I even saw a hospital consultant he referred me to and then he asked after I had seen the consultant if I was having a biopsy to which I said nothing had been mentioned and if I had been diagnosed with PBC what was the point.

    I have to say I do not go in for these stages of PBC myself, I just do not want to know. I also can't see the point in my case in particular. There are pros and cons to a biopsy but also saying this I know if I was asked to have one performed now, I'd not agree.

    I'm certain with scans and also blood tests and how one is feeling along with certain symptons, a medic has a pretty good idea.

    I was offered Piriton prior to seeing a hospital consultant back in early 2010 when the GP at the time hadn't done the relevant blood tests to check whether it was bone or liver related after abnormal LFTs. I wasn't keen and I had read that Piriton wouldn't help but you have to remember I got the one that everyone can get over-the-counter and it isn't exactly one that would make one drowsy. It is the first time I have heard of Citirizine.

    At present I do itch later evening which lasts until 5a.m. If I managed to drop off to sleep when I go to bed, I can wake up once or twice perhaps during the night and some nights I go right back to skeep and others I don't. It is when I wake up and have been awake about 10mins the itch seems to restart.

  • More conflicting advice! When I was first diagnosed with PBC ( 13 years ago) I had been on HRT patches for years. I was advised by my consultant to give them up.

    I did take his advice but I had had the benefit of them for the menopause.

  • I'm a bit confused myself now, not with the original question but a couple mentions of HRT and patches. (My mother died when she was 43 years ago so no experience of hers there and my only sister, she had a hysterectomy a decade ago so she's of now use either!)

    I thought that HRT was for a woman going through the menopause and it ws then ceased after menopause? Is that right?

    I know at present I am in perimenopause, my cycle has spaced out but that's all, nothing else (as yet). I'm 49 by the way.

  • I am now on the lowest HRT evoral patch and went to get a prescription yesterday and had to argue for them, My gp says they are stopping prescribing them also Yesterday i was taken off my protelos ( osteoporosis drug) as they said its now been found out it can cause serious heart problems so thats two they are stopping me from having, I am just waiting for them to come up with something about urso.

  • Hi all, I'm prescribed domperidone 10 mg tablets, one to be taken three times a day for the itch, and I find them very effective. I'm also lucky enough to have a GP who is aware of and has quite a lot of knowledge about PBC, hope you get meds sorted.

  • I use HRT and have for 23 years, because of having to have had both my ovaries removed and a hysterectomy. I only take half the dose I did many years ago though. My drs have kept me on it because I have severe osteoporosis.


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