Itching hives on neck & eyes

[Carol60]

Hello. Just a quick check-in with my PBC community on an issue I've been having for a couple of weeks. In addition to my normal itching, which tends to worsen at night and keep me awake, I have recently developed intermittent hives (raised, red, hot, itchy, and rather painful/pins & needle-like if scratched. Nothing newly added to my medications other but I'm also suffering crampy diarrhea (sorry! YUK!) and lower abdominal pain when these cramps at at their worst.

So, has anyone else with PBC experienced such symptoms? It seems I'm allergic to something, but nothing has changed in my meds, personal products (soaps, shampoos, etc.) The hives are thus far limited to my neck/chest and lower face with my eyelids very itchy but not red. It is very similar to a previous drug-reaction.

My doctor says it could be an allergy to anything and to try elimination. Anyone have any advice or similar experiences?

Thanks for any advice. Best,

Itchy

[Ktltel]

Carol60,

Could it be your URSO? Maybe they refilled your prescription at a different company this last time. Different fillers can cause reactions like your experiencing. Check with your pharmacy.

Stella

[Carol60 in reply to Ktltel]

Thanks for the suggestion, Stella. I always use the same brand of URSO (Actigall) because the others give me terrible gastric problems. I'm hoping it isn't the URSO since my liver functions have improved greatly while taking it.

[butterflyEi]

Hi Carol60

For your tummy problems - if you eat any dairy products it might be a good idea to cut them out completely for 3-5 days. Substitute ordinary tea if you drink it with herbal teas, I think ginger or peppermint are supposed to be good for the digestion as is camomile. This may not be PBC related. I had a tummy bug last week that put me in bed for 24 hours followed by a couple of days lolling around.

My itching went ballistic 3 years ago but I have never had the red rash some people experience (oh just tempted fate!) I have found by process of elimination that nothing in the diet changed the intensity of my intense itch on the arms and the stinging sensation over the rest of my body. Recently it jumped onto my face. I believe my itching was triggered by a very stressful event which has not really gone away.

You say nothing has changed in any of the medications or personal items you buy but has there been a stressful event for yourself that may have made the itch worse. I find my mind can be very difficult to keep under control and stop me fretting over the smallest detail and I am sure this adds to the intensity of the itch.

Hope this is of some help

best wishes from a fellow itcher

[Carol60 in reply to butterflyEi]

Hi ButterflyEi,

Firstly, thank you for the great suggestions on the tummy problems. I will avoid dairy, which typically doesn't bother me and see if that clears up. I am also beginning a course of probiotics to try to get the good flora in my gut going and perhaps correct the bad. I do drink tea (and coffee) and a bedtime cup of chamomile does help me relax -- not sure it does much for my digestion but it can't hurt.

I never considered that this could be a stress reaction. I have had a recent discovery of a lesion in my liver and I must admit I've been quite stressed about it. So perhaps I'll be relieved when my next round of testing is done and we discover it is a shunt from the biopsy or a hemangioma or other benign growth. It's not been overly dramatic but I have definitely been concerned since it seemingly came out of nowhere. I hope that's what has me in the hives and it will go away once they say it's benign.

I'm scheduled to holiday with my 6-year-old grandson next week so this rash and discomfort is NOT in our plans.

Thanks again for your help. Truly appreciate your taking time to share some advice.

Best regards,

Carol--

[marlene124]

My face was also like that.Doctor put me on antibiotics and cortisone as well as cream he make.

But my arms is always like that.

But must go now for a back operation the cushions is busy to disintegrate.

Can it be due to PBC? Why every thing as well as our bile ducts is busy to disintegrate?

Thanks for listening.I am from South Africa not many doctors knew PBC.

[Carol60 in reply to marlene124]

Hello, Marlene in beautiful S. Africa. My husband visited last year on business and it looked lovely. Thank you for taking time to reply to my posting.

Sorry to hear about your back operation. I too have disintegrating discs so I know how painful that can be. I hope your operation goes very well and relieves your pain.

My doctor thinks the rash is an allergic reaction to something I am eating, drinking or wearing. But nothing I have tried so far seems to make it go away. I am using a corticosteroid cream, and an oral antihistimine which does seem to help with the swelling but the itching is miserable.

I have read that PBC is extemely rare in the southern hemisphere. I can only imagine that finding a doctor who knows about it is a challenge. Are you in one of the larger cities or in the countryside?

Take good care of yourself and keep in touch.

Best regards,

Carol--

[Marysla in reply to Carol60]

I have had something similar and I was put on a combination of zertec antihistamine and Zantac which is used for the stomach normally but together vthey are a miracle for the hives .

Good luck

[Franky007 in reply to Carol60]

My son had hives for no reason they were huge itchy. Ended up being auto ammune. Sometimes there is no known reason. I have noticed the past few months that I have a rash on the bridge of my nose. I am not sure what it is but I will have the dr check it out. Wish we could have some clear answers

[Rockie in reply to marlene124]

Marlene124 I am also from South Africa and I agree with you there is not much help for us here

[Franky007 in reply to marlene124]

PBC can cause osteoporosis. Your body doesn't absorb bit property. PBC can cause many things. Good luck with your operation

[marlene124 in reply to Franky007]

Thank you

[liver-bird]

Hi Carol - I had pain and diarrhoea which my GP said was due to Pbc, but it turned out that I had another autoimmune condition called Coeliac disease. Now I don't eat gluten, the pain and diarrhoea have stopped and I feel much better. Worth checking out. Good luck. Diane

[Carol60 in reply to liver-bird]

Hi Diane, Thank you for taking time to reply to my post.

My docs seem to think the gastric problems are possibly related to my use of URSO for the PBC in what they called bile acid malabsorption. Having some follow-up testing done because it can also be caused just by the PBC itself, which wouldn't be a reason to discontinue URSO since my LFTs and alkphos have dropped from very high to the acceptable range. So, the URSO is doing it's job.

I do carry the genes that makes one more susceptible to coeliac disease (along with colon cancers) but have never shown the sensitivity to wheat or gluten. I may try to stay away from grains for a while and see if it helps. At this point I'm desperate for a solution.

Thanks again for the suggestions. It helps to know that others have experienced these things and found a way around. Take care and keep in touch.

Best,

Carol--

[Franky007 in reply to Carol60]

You should try no gluten it has made a bid difference for me.

[kristieerhodes]

Are you just on Urso or Urso and Obethalic Acid (Ocaliva)? I started taking Ocaliva in december and my itching became so bad that I have bruises, sores and claw marks all over. Hot areas like feet and hands, oh and my thighs. The pins and needle itch and burn is so awful! They reduced my urso to 600 mg a day and 5 mg of Ocaliva a day. It has helped a little but not much. I've been on Urso since 2005.

[Carol60 in reply to kristieerhodes]

I'm just taking Urso (1000mg/day divided into 2 doses) and it seems to be helping my liver functions, but NOT the itching. I tried Cholestyramine and couldn't tolerate it. I have a touchy digestive system and a ton of allergies so I'm hoping to not use the Ocaliva or anything new/untested unless the Urso fails me.

I've only been on the Urso 6 months but my LFTs and AlkPhos are already greatly improved. Just hope these hives aren't anything to do with the Urso.

I empathize with your itching, Kristie. Mine is terrible at night but I'm taking Atarax after dinner and a zolpidem at bedtime to try to keep me from clawing my skin off. Itching really is the worst part of this PBC stuff and just contributes to the fatigue.

I hope you start to feel better and the itching subsides. Have you tried any topical stuff? I find the Aveeno Anti-itch is a good temporary fix when it's just intolerable.

Take care and keep in touch.

Carol--

[Shirl5 in reply to kristieerhodes]

Kristie

I have been on urso for about 10 years Doesn't do much for me but it was all there was. I did not itch with the Urso, I started ocaliva 30 days ago and I have an intense itch constantly. It is unbearable.

The doc put me on a pill for itching however it makes me groggy. I go to doc on Thursday hope they can help.

[Rockie]

Carol60 I can relate to your problems. For no reason I would have upset tummy,but for me it is actually a good thing from time to time, as then I get rid of bile and the itching is then less. I lately developed eczema in the palms of my hands, under my feet, and on my forehead. I am sure the liver is to blame for that, as I am so careful with my diet. Cook my own food, gluten free diet, and fat free diet. My liver blood results are better than years ago but I tend to itch more the older I get (I am 76 now). Well at least I know I am not alone. All the best. Creams are only helping for short while as it is in the blood stream.

[Carol60 in reply to Rockie]

Hi Rockie, Thanks for taking the time to reply to my post. My hives are coming and going with no rhyme nor reason. Doctor's say it is allergic dermatitis but seriously I'm not doing or using anything that can explain it. Allergist suggested an antihistimine and a topical creme to reduce the red swelling. They help a bit but don't seem to last for long. I've been a week without the hives so perhaps they are gone for now!

My sister-in-law suffers with eczema and her doc says it's just a "part of aging." I suggested she see a new doc

Take care and keep us posted on how things are going.

Best,

Carol--