Itch. What does your doctor prescribed for your itch?

[marty102]

Finally going to see the doctor after having my liver biopsy 3 weeks ago. I should now be able to get treated. I need some suggestions for when I go in.

What does your doctor prescribe for PBC itch? Cost? Does it actually help? Side effects?

[Hidden]

Hello marty102.

I am in the UK and the usual route for the itch in PBC (I have it too, how mine was diagnosed 2010) is to start with colestryamine (or branded name Questran). I can't say much as I've not had anything for the itch. I did encounter it badly during 2010 but over time on the urso for PBC it has altered in how it is. I tend to itch later at night and by 6a.m. it has vanished. I do get prickles during the day and then after 8p.m. it starts to build up to the itch around 11p.m. Causes broken sleep at times.

I've never asked for anything as with the Questran it seems that it can works for some, not others. If it was said to work for everyone then I'd have opted to have it. I don't want to encounter one of the side-effects that are said to be diarrhoea. I've never had this with the urso that some can have.

There are other medications that tend to be tried after Questran but it is down to the doctor and patient so I cannot say.

In the UK if a patient isn't on certain state benefits (I'm not) then we have a standard NHS charge per prescription item otherwise it is free for benefit claimants. Cannot say for othe countries.

[marty102 in reply to Hidden]

peridot

My itch is all day then worse at night...about the same time frame yours is. I just started urso and I think its making my itch worse. I'm hoping UT will get better over time. I was on Questran briefly before I saw my GI doctor. I think it might have helped...I wasn't on it long enough to know for sure. I think I'll ask for it now to see if it will help.

Thanks for your response.

[Hidden in reply to marty102]

Hello again marty102.

I was exactly as you describe in the beginning of 2010 and I too thought the urso was making the itch worse for awhile after starting it. (I also had heartburn, a bit of bloating and started with constipation(never was prone to previously) as well for a few months after starting urso but they vanished, the itch felt like it did pre-diagnosis but constipation did remain (had to alter my diet slightly, been ok doing this).)

We can get some side-effects for a short while after starting urso and it is said to be 'well tolerated' with the majority but as we know there are always exceptions.

(Sorry I don't understand the term 'UT' in your reply.)

[marty102 in reply to Hidden]

Peridot,

Thank for your reply...UT was my dumb auto correct. It was simply the word "it".

Your response makes me feel better. I have heard others say it does get better. I guess I'm just tired of feeling this way and want to rush it

I got my biopsy results today. Stage 2...not sure how to feel about it, yet.

[Hidden in reply to marty102]

Hello again marty102.

As an after-thought yesterday, have you requested a free dvd from Liver North here in Newcastle, UK that is all about PBC. Check out their website and fill out the details. You can also find newsletters on there that you can read and though they cover various liver issues, they do a lot on PBC.

[marty102 in reply to Hidden]

Peridot, some how I missed this post. Thank you for the information. I'll look into it.

[lizagood1 in reply to Hidden]

Hi peridot,

I'm now on 3 separate meds a month and have bought a pre paid certificate that allows me to have the medications 'free' every month. This is only worthwhile though if you are on more than one item a month. I paid just over £30 for this and it's valid for 3 months so I've saved quite a lot. You can purchase yearly ones too but I'm 60 soon and will qualify for free meds then anyhow.

[Hidden in reply to lizagood1]

Hello lizagood1.

Wouldn't work out cheap for me, only get the urso AND I fought my GP to have 90 days of it each prescription due to paying prescription charge.

Thanks for the suggestion though.

[lizagood1 in reply to Hidden]

By the way the doctor has prescribed Questran for my itching, I had mine more on my feet and arms, it has relieved it quite a lot although not eradicated it completely but I'm grateful for that.

[butterflyEi]

Hi marty102

I had itching around 1999 but it stopped. When being investigated for something else I was diagnosed in 2006 with PBC and was prescribed URSO which has not caused me any problems other than indigestion when I first started it.

At the first consultation with the specialist I was told to take anti histamines for the itch. I started by taking a one a day over the counter tablet and worked my way through Piriton and on to Cetirizine which was prescribed by the doctor 2 tablets twice a day. In 2014 after a very stressful event the itch went out of control. I could have ripped my skin off. Even during winter I was not wearing long sleeved anything as I could not bear it. The GP tried me on a couple of alternative anti histamines but nothing was working. In summer last year I changed surgeries and at the new surgery I asked for Questran (cholestyramine). I now take 2 sachets of Questran Light each day, it took 8-10 weeks for it to calm the itch but it did not rid me of it so added to the mix was Naltrexone but I reacted badly to that tablet. Not sure which country you are in, I am in the UK where because I am over 60 I get my prescriptions free, when I was younger I paid the NHS charge applicable at that time.

I am currently waiting to see the specialist at the end of this month to see where I go from here. The itch can and has in the past reduced me to tears. It seems that the itch manifests itself differently and in different places for many of us.

A temporary relief is a 2% menthol cream or ice packs but it is only temporary.

best wishes

[Rockie]

ButterflyE I know exactly what you mean by feeling you can rip the skin of your body. I am at that stage now with the itching. I use all sorts of creams (perfume free), try and eat right, avoid gluten, but still it gets worse. Have been down this road since 2009, but as the decease progresses,the itching for me, gets worse. The anti histamines I tried, did not work.So good luck, I know how you feel

[butterflyEi in reply to Rockie]

Hi Rockie

Like you I have changed my diet but it has not made any difference. The up side though is I am 10 kilos lighter and still have a bit to lose

[Melwoods]

I've tried everything

Questran , naltrexone , sertaline , rimfapin , all sorts

Since being on Urso it's definitely worse if if could be any worse !

Itching has as is tearing a stop of off me day by day , I'm being referred to Birmingham for irritractable itch for clinical trails

It's a terrible thing and it's changed me

[butterflyEi in reply to Melwoods]

Hi Melwoods

I was going to like your post but thought it better to wish you good luck with the clinical trials. I empathize with your last sentence!

[Rockie]

I agree this PBC with the itch is really not a walk in the park. Luckily I had the fatigue only for a while, due to water retention, but after spending 4 days in hospital, I am no longer so tired. Realize I still have a lot to count my blessings for. Best of luck

[mishhop]

Am same up all night itching sat crying most of the night tired and irritable through the day on medication at mo don't seem to be working really getting me down

[marty102 in reply to mishhop]

My doctor prescribed Prevalite...once in am and once in pm. I've only taken it 2 days so don't know anything, yet. Not working so far