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pbc and itch

dorisdaydream profile image
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pbc and itch

hi all I have a few autoimmune conditions including pbc last blood test showed high cholesterol and high inflammation so I decided to cut out high fat etc in my diet and lose some weight now I am beginning to itch which I never did before any advise please

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dorisdaydream
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teddybear7 profile image
teddybear7

My itch comes & goes. I eat low fat & healthy. I use E45 but you can get tablets but my doc hasn't given me them. It's all part of it I'm afraid x

butterflyEi profile image
butterflyEi

My itch comes and goes and at the moment it is very active, I eat a low fat diet but the weight never seems to come off. My itch used to be just on my arms but now it has travelled to other parts of my body and seems worse at night. I keep the skin supple with the use of doublebase gel (recommended by another contributor) I use antihistamines for uticara but sometimes the itch is just there, madingly unstoppable, and other times it disappears. When it gets really bad on my arms I take a dampened t-towel and put ice in it to cool the area.

There is something called Questran which you can get from the GP, I have heard of it but have not tried it.

hope this has helped, best wishes

Hello dorisdaydream.

Well unfortunately the itch is part of PBC and it appears from your posting that is now what you are encountering.

Back early 2010 I started to itch. I was fatigued at the time, didn't think was anything as at the time I was working far too much over allotted full-time working week in a pretty stressful managerial job at the time. Took myself off to the GP and then went on the road to being diagnosed with PBC Dec 2010. Started on urso. The itch continued but over time it has improved somewhat. I am a night time itcher and some nights when it is pretty annoying I have trouble sleeping for long. No longer fatigued, at some point in 2011 that vanished. My only symptons that I know myself with PBC, the itch. (I have abnormal bloods still but I don't know how they are without blood checks of course. I also was found to have a high titre of antibodies, the AMAs that gave my diagnosis.)

Now the cholesterol I have found to be a bit of a contradictory issue as back in 2010 when I had bloods for allsorts of checks, my cholesterol at the time was said to be 'a bit high' but I've had no problem since. It is said that in PBC the cholesterol can come up a bit higher pre-treatment as bile is needed to break down fats, cholesterol being one. But I have also read that the cholesterol level that can be found is actaully the good cholesterol. A bit confusing but I do think that once you are diagnosed with PBC and taking urso which is a component of bile acid then you may find a difference in future but at the same time having a higher cholesterol level can also be normal as it can be in others who don't have PBC.

I never really had much of a high intake of fat pre-PBC but after diagnosis I cut back that bit further. Remember though we have to consume some fat as we need it for fat-soluble vitamins like A and D. D is particularly important as it can be one that in PBC isn't easily absorbed along with several others. (I utilise the sun even the winter sun these days as I was never a sun-lover pre-PBC but it is needed for Vitamin D manufacture in the body.)

Some nights when I hardly itch or have the rare occasion now where I don't I t hink I have somehow managed to balance things out, whether it be the urso and food intake or maybe being more over-active I haven't figured that one out.

Julez1961 profile image
Julez1961

Hi dorisdaydream

I have been diagnosed with PBC for around 12th years now and 5 years ago my liver failed and I was on the top of the list fora transplant but my liver decided to kick in enough to go way down the list. When my liver was at its worst I wasn't actually itchy but in the last 6 months my skin feels like it is crawling. I am so itchy it is driving me nuts I am definitely worse at night and keeps me from sleeping.

It seems we are all similar but different! For me moisturizer helps as does the ceiling fan because it keeps my skin cooler.

I was prescribed Phenergan for my itch, but one of the side effects is not sleeping, I'm already bad at that!

Good luck if you find a cure let us know! ????

Julie

Italiannaillady profile image
Italiannaillady

Have your doc put you on Cholestyrine. It's a packet that you dissolve in juice or water. It works nicely.

dianekjs profile image
dianekjs

Hi ddd, as others have pointed out, itching unfortunately tends to go hand in hand with PBC. However, if you are saying that you believe in your case there was a correlation between changing your diet and the first appearance of itching as a symptom, then that may be worth experimenting with your nutritional plan. It could also just be coincidence. I personally believe that many make the mistake of cutting down/out all fats, instead of just the "bad" fats. Healthy fats are imperative for optimal health, and autoimmune sufferers need lots of omega 3's. You may want to try boosting your omega 3 intake while curbing commercially processed seed oils, trans fats, processed foods in general, etc. If you'd like more specific suggestions, let me know. Best.

mharib profile image
mharib

I have had the itch for a long time. all over it drives me crazy. have any of you tried taking antihistamines that's what I take and it works if it wasn't for them I think I would have shot myself my now. maybe worth trying if you haven't already

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