I know lots of you have the awful itching all over. I am lucky it is not too troublesome but when the biliary pain is surfacing badly again I get really hot, blotchy red itchy palms and sometimes soles of feet also.
I am on five 250mg Ursofalk a day and also prednisalone and am due a top up steroid injection soon so symptoms have been increasing as the old injection wears off.
Doctor thinks it is biliary inflammation surfacing and it does seem to settle after a course of Ciprofloxacin, just wondered if anyone else had similar.
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cuttysark
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Just to add, I also get horrible nausea and overall sweating at the same time as itchy palms, though often the bloods are not raised.
The Ciprofloxacin usually gets rid of the sweating pretty quickly and the itch subsides in a few days. GP thinks it is bile duct infections but does anyone get the itching but no infection??
Yes when I was first poorly whilst pregnant and with glandular fever I had extremely itchy feet andhands and red palms.i was told it was the by products that the liver didn't clear out.how did you manage to get steroids I had them in the beginning and now don't seem able to have them but they definately help for a temporary lift.x
Thanks so much Cazer for your reply! I also have Sjogrens and was given the steroids for the autoimmune disease. The biliary pain and itching improved with the steroids so they linked it up with the autoimmune disease.
I am having a bad flare just now as my steroids are very low but get a big injection Friday so can't wait, it helps me for a couple of months.
The itching this time has spread all over now and is there all day so I am scratching away. A hairbrush is a good idea, I scatched my shins so much they were bleeding.
I will try the Dermovate like you say.
Funnily enough It all started when I was pregnant with second son, the biliary pain and itching.
Interesting it is due to liver not getting rid of toxins.
Careful with hairbrush on normal skin its just okay on soles n palms as tougher skin
I was also told pregnancy knocked pbc on much quicker than without
Im stable and have been for last 16years since I had my last son. ...was okay with other pregnancies (3) but I am so fatigued that I can do very little hence the desire for steroids which I know give me temporary relief.spec you've done all the things like keeping cool...don't wear socks even if cold.speak soon.cazer.x
Yes, I do find any heat makes it much worse. Will be very careful with thinner skin too!
The fatigue is the worst thing of all, have to go to bed every afternoon sometimes am there three hours later and can't get up am just so shattered .
The steroids definitely do help the fatigue and I get a couple of months benefit from the injection.
I am also on prednisalone oral tablets all the time, but a very small dose, any more and it upsets me.Do you also take the Ursofalk, it helps but doesn't do much for the fatigue.
A fine balance I suppose, I had four boys, all grown up now,but the second pregnancy sparked this off. Was pretty sick right through the last two pregnancies , don't know how I did it, suppose I was younger then!!!
Hi cuttysark, yes I also suffer from bad hands. They are extremely itchy, then I scratch, the they blister and sore and extremely dry. I seem to go around in circles!!!
But they look awful. Do you take the Ciprofloxacin for this?
Usually the Ciprofloxacin works if there is an actual biliary infection starting, but this time I took it and it hasn't worked.
I am now itching all over, used to be only palms and feet. I will no doubt need to be getting bloods checked again but what makes a big difference is a slow release steroid injection.
I get one done at the hospital on Friday this week so it will be interesting to see if the itch goes away then.
I can eat almost no protein now apart from the no fat diet or the biliary pain and itching get worse. It is really hard. But after the steroid I can eat better for six weeks or so.
I have the dry skin too like a fine white powder all over my skin.
Hi, I used to get very itchy palms and soles of feet when I was first told of the disease. It will subside then something will flare up with this illness their's always something. I've had Pbc for 14 years I'm now in cirrhosis stage , however I continue to work and live life u just learn to cope and adapt.
This time the steroid injection has not worked at all and I am still itching with the biliary pain. If I wake up during the night and take some peppermint tea and buscopan it isn't so bad in the morning but if I sleep right through to six ,as this morning ,it is just awful when I wake up.
Main problem now is anything I eat is aggravating it, not only protein and fat.
Am due to see consultant soon, maybe there is something else going on too. I had a couple of biliary sphincterotomies about ten years ago to see if it would help it to drain and GP is wondering if there is scarring there now also, but the bloods so far have not changed and I have no jaundice.
You have suffered a long time too, but it is great that you still manage to work.
Hi cuttysark I have itchy nd red palms drives me mad sometimes also itch mostly on front of neck I am on rifampicin which gives me some ease but not complete ease I find that working hands hand cream does ease soreness
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