PBC Itch and menopause...feeling nuts!

[krazy-girl]

3 months or so I have been going through hot flashes, night sweats, low mood., and to top it all off 2 weeks ago the itch of PBC has been bothering me. I am 58 yrs old. Was on HRT till my PCP said she needed me to come off of it. Do to bad side effects. 2 years ago I was diagnosed with PBC and have been symptom free till 2 weeks ago. I got the itch of the disease. I just got the prescription chlorystrime and was put on antihistamines. I also use a menthol camphor lotion. Nothing has helped me yet. Am usually very active in my church but I only feel comfortable at home. Between scratching and sweating I feel very self conscious about myself. I deal with many things physically but I think this is the worse I've been in a very long time. I want to know how other PBC'ers deal with the itch? Does it make you feel "dirty" or like you have bugs? Are you self conscious? How do you deal with it?

[butterflyEi]

Hi krazy-girl

I am through menopause thankfully but it is not that long ago so remember it all quite well! From diagnosis in 2006 to 2014 I had remained fairly symptom free. In April 2014 after a stressful event I started to itch and continued to do so until about a week ago. Having been prescribed various anti histamines which either did not work or did not suit me I was given Questran (cholestyramine) when I asked the GP for it. She had no real knowledge/understanding of the working of it so when my itching did not resolve it was a surprise to learn that it takes quite some time to get into the system. Unfortunately even though I was on the Questran light it helped but did not rid me of the itch. I have now seen a specialist who has prescribed Rifampicin as well and for the last 5-10 days I have had some very tolerable days - thankfully. Now that I am more comfortable I wonder how I coped for so long with the so called itch of PBC at the severity it presented in my body. You asked how did you deal with it - with tears and anger, tried to ignore it - that did not work so well and probably most of all withdrawal from others.

I use a 2% menthol derma cream which is a useful (for me) topical application. I have also used ice directly onto the skin to cool the area heated from my scratching. I do not think I felt dirty with it or even lousy but when in company that did not know me I did feel very uncomfortable and preferred to stay at home rather than encounter ill-educated stares.

There is an article on itching by Prof.Neuburger in the Bear Facts magazine which can be found on the PBC Foundation web site (free to join through the icon above) it is in the Spring 2015 issue. Although written a couple of years ago there is nothing new that I am aware of that will help.

best wishes

[7265sunlower in reply to butterflyEi]

We must. Have the same doctors. Bloody. Useless..my legs an underarms are red raw.through scratching.he gave me some benovate and told me to buy some Pirton it did no good I felt like rubbing me legs on the cat scratching post x

[Hidden]

Hello crazy-girl.

Oh the itch in PBC, not something I would wish on my worst enemy though I would love to give it to a few doctors for a week so they know how we really feel with it.

I've been itching now 7yrs. I was 45 at the time it started, this is how I was diagnosed with PBC. Before having first blood check early 2010 to find my LFTs (liver function test) was higher than normal I was prescribed antihistamines. I found out after that they don't do anything for the itching as it's not an itch caused by an allergic reaction. (I didn't get the prescription, I knew by looking you could get it over-the-counter so being in the UK I did that instead as the mgs was exactly the same. I did take these tablets for a few days but all they did was make me feel nauseous all the time, nothing for the itch.)

I started taking the urso December 2010 at diagnosis and it took about a year or just over for it to start to change in pattern. I tend to itch later at night and right through the night (causing broken sleep) until 6a.m. I do get prickly during the day if I bend my knees for a period of time where the site is or if I even bend my elbow (holding a telephone) and then it can cause itching. Even clothing causes me to feel prickly and then itch.

I describe the itch as either rolling in nettles or being stung by a lot of wasps. Said to be caused by used bile and as bizarre as it sounds it is really our body ejecting the toxic used bile via our skin as a protection. My theory is that this used bile being in the bloodstream reacts with all the tiny nerve endings so that is why we get it any place on the body. For me it tends to be my legs and fee that get it late at night but usually waist down I am affected. I find that laying down or even sitting down, it is more than likely we are putting pressure on certain points where blood constantly flows so this is why we tend to start feeling prickly and then itching follows. I tend to have to be on the go most of the waking day (not that I get much sleep through the night really). As you have pointed out going to church doesn't feel 'comfortable' now. I did go to my niece's son's christening in 2011 and in church I found myself very uncomfortable as early days of taking urso, itching was at the time almost 24hrs a day and it was a bit of killer for me sitting in the pew for the service. I don't find sitting about very good these days.

I started going through the menopause just over 4 years ago and think I have completed it. I haven't really had any symptons except an erratic cycle that hadn't been monthly for the last few years. My cycle stopped almost 6 months ago now so I think that is it. I hadn't experienced the hot flushes and sweats but in the last couple months I have! Can't say I like them, coming all over hot like a candle burning from the inside and then as soon as it starts to get unbearable I suddenly go cold. I have woke up once in bed during the night recently wet with sweating and as anyone on here who itches with PBC will know it isn't for a good combination if you were asleep and then wake up due to sweating so you can start itching all over again within about 5mins of waking.

I've not resorted to asking for the Questran (colestryamine) - I am in the UK - as yet as it seems that it is very hit and miss. Seems from reading it doesn't work for most. That in itself also brings side-effects and it seems the common is diarrhoea. I also do not fancy the artificial sweetener that is in it. But that's me. I think if I did get to a desperate state like I was in 2010 (but wasn't offered anything for the itch but I think not having a diagnosis of anything plus me thinking it was something temporary, this kept me going, it's when you are informed you have PBC and it is for rest of life that gives a different perspective then), I would more than likely ask for something.

I find being cool helps immensely with having the itch. I take the urso in spaced out doses (3 times per day) as opposed to all at once. I say this as I've experimented with it and found that when I took the lot with breakfast a few hours later I was itching like I do late at night and I do not usually do this so I think even though the itch has altered for me since taking the urso, the urso also causes the itching so I think in my case one is ruling out the other meaning I still have the itch. But urso isn't said to rid one of the itch.

I try and not put myself in certain situations now if I can. I know of certain unimportant things (ie cinema) that I probably will never do again but I can get by with that.

[dlahullier0305]

Hi. I had the itch long before the diagnosis. I also have pretty dry skin. U am 61 and also have diabetes, high blood pressure and osteoarthritis. I combined one ounce each of

1. Avocado oil

2. Almond oil

3. Castor oil

4. Rosemary oil

Put them all together in one of those hair dye dispenser bottle with the long tip. Put my finger over the tip to shake before each use. I spread that wherever I itch. Then I take violet baby cologne and splash that all over. It minimizes the smell of the rosemary oil and actually creates a great new scent. It also minimizes the itching sensation and after each use, you will see less and less broken skin. It actually helps the healing process too. But don't stop doing it at least every other day or so. It is so healing and comforting, as I believe the aroma is also very relaxing.

[7265sunlower in reply to dlahullier0305]

Wow I'll give that a try thanks diahullier0305

[dlahullier0305 in reply to 7265sunlower]

You are very welcome!