PBC and Cholinergic Urticaria: I have posted... - PBC Foundation

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PBC and Cholinergic Urticaria

ZEMR profile image
ZEMR
21 Replies

I have posted a couple of days ago about PBC and sun exposure. The rash that flares by the heat and the sun burn as well as the itching. Some of you have said it looks like blisters... Well, since I suffer from that extreme itching every time I get some sun on my skin, I did go to the dermatologist. Not only about that but also about some different rash that comes on my cheeks and forehead every few days, as well as my fingers, palm of my hands.., this rash looks like little bumps, barely visible, but I feel them when moving my fingers on my face, and they also itch like a sun of a gun. They drive me nuts. I start scratching, then they leave dark scars afterwards. It's all stealthy and barely visible on my face, but it's the tiny but mighty kind of thing!!! Well the dermatologist looked at them and knew right away what they are: CHOLINERGIC URTICARIA. She said they happen a lot with PBC patients. The bile salts pile under the skin, flood or choke the cells, the immune response is histamine, the cells burst, and the rash or little bumps come up to the surface through our folicles. Exercise for everybody else can cause them but for us, it's good, it helps us sweat and get rid of the salts locked under our skin. Drinking lots of water helps flush them as well. She also advised me to take Claritin 3 to 4 times a day when I feel a wave a rash hitting me to take care of it fast before it becomes itchy.

I thought I'd share in case any of you is suffering from the same thing and wondering what it can be. Still only one's doctor can tell them what it is and what to do, but we share and maybe some knowledge can help, even to bring it up to our doctors as some of them have no clue how some symptoms happen, just like my GI who told me, "NO, you facial rash has nothing to do with PBC!!!"

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ZEMR
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21 Replies
ninjagirlwebb profile image
ninjagirlwebb

Thank you for sharing.

ZEMR profile image
ZEMR in reply to ninjagirlwebb

Your are welcome Ninjagirl 😊

June9961 profile image
June9961

Hi, I get similar every summer. My gp has failed to diagnose it and I wonder if this is what I get. It starts on my shoulders then travels to the back of my neck then travels right round. It is not very easy to see but like you it can be felt by touch and itches. I am going to suggest to my gp what your dermatologist has said. Thank you.

ZEMR profile image
ZEMR in reply to June9961

That's a good idea, and maybe a visit to a good dermatologist will be beneficial as well. That way you have a well rounded opinion. My GI did not know what I have on my face and was asking if I showered with hot water, or if I ate certain food, and decided the rash is not related to PBC, but the dermatologist knew what it was when she saw it, and googled it for me so I can read about it when I go home, and also gave me a good explanation. Doctors do give us their opinions, but we can feel if they say is convincing and makes sense or not. At least I do. I thought my dermatologist gave me the right diagnosis. I started drinking more water, and I hit the gym yesterday and sweat a lot. I've never been happier to sweat, something I usually don't like at all :)). I usually exercise at least 3 times a week but have been slacking lately, and now I know more than ever, that exercise is good for us PBCers on all levels. So if it is going to alleviate itching, that will be my biggest incentive :). Good luck to you, and here's to our best health.

Thank you for sharing this, I find we have to be our own advocate and I know sometimes I need to go to my GP, with the problem and the answer for him to look up , as he is not an expert in pbc and you can’t go to a consultant in the uk without a referral.

ZEMR profile image
ZEMR in reply to

I see. Can you get a referral? Or is it difficult to do?

You are most welcome. I feel that coming to HealthUnlocked, not just to ask questions but to offer new info I find out about my condition, or answers from my doctors, is my duty and my way to give back too. Any extra bit of knowledge can help, and I learned so much from everyone's experience here even though I became a member only a couple of weeks ago.

butterflyEi profile image
butterflyEi

Very useful information thank you for sharing

ZEMR profile image
ZEMR in reply to butterflyEi

You are most welcome :).

shaza1966 profile image
shaza1966

Hi Zemar i have just showed the pharmacist the rash i have and she thought it was shingles but because i have it on both arms that ruled it out . She said it wasn't heat rash. It does itch a bit . Using Aloe Vera gel and10mg Cetirizine Hydrochloride it is a antihistamine tablet. Does your bumps have a red rash round them in some places as mine do on my arms , but on my hands it is just the bumps alone . Thank you so much for this information so helpful i will let my pharmacist know for future reference. Was going to add a pic of my arm but i can't see anywhere on here how to upload a photo

ZEMR profile image
ZEMR in reply to shaza1966

You are very welcome Shaza. I think the rash can be different for everyone. When I looked at the google pics my dermatologist showed me, it looked much worse than mine, and more visible. Thank God it doesn't look that bad on my skin, but they are tiny to medium little bumps on my cheeks that flare, and can become red. Then when the surge is over, they fade away leaving darker hues. They disappear for a couple of days then the cycle is repeated again :(. On my fingers and palms of my hands, it manifests in very tiny blisters that bump up, itch like crazy then burst, and fade away leaving dry skin behind. The blisters on my fingers have been an annoyance for at least 10 years now, so maybe that's when the onset of the condition started, but no doctor could figure it out. They kept telling me the gloves you use to wash dishes can cause that and few other reasons, and told me to take allergy meds for it. I have only been diagnosed for few months, but obviously this has been going on for years, as the itching escalated to all part of my body, thighs, chest, hands, arms, and it hit the worst at night, this was going on for years more and no doctor could figure things out either, until I was diagnosed finally and started URSO. Itching after that subsided drastically, but I still have it after sun exposure, and also every few days on my face like I mentioned.

shaza1966 profile image
shaza1966 in reply to ZEMR

Thanks Zemr for the reply i have also had itchy hands and you have described it to a tee when the blisters burst on my hands it ends up looking as if i have been sunburnt without any colour and they peel like you would get after sunburn it's so itchy and sometimes painful. So my doc gave me some steroid cream for them and that helps . It can be very unsightly.

quilt_debbie profile image
quilt_debbie

Thank you for this info. I have struggled, with a slightly different rash, on only one foot, thank goodness. Dyshidrotic eczema. Small, water filled, itchy blisters. Very painful. Auto immune related. Same type of tx, histamine, cortisone cream. It's an interesting read as well. The very to you.

ZEMR profile image
ZEMR in reply to quilt_debbie

Hi Debbie,

You are welcome, and thank you for your comments.

I wrote a detailed reply but it looks like I forgot to hit the reply button and I lost it :(. I've got to run now, but will be back to reply to it soon.

To our best health :).

Z

ZEMR profile image
ZEMR in reply to ZEMR

It's amazing how different these nuisances are from one person to the other. Mine have been only on my hands for the longest time, and lately I noticed some coming on one of my toes. It went away fast thank God. Like I said in one of my replies here, that I had this even way before I had any symptoms, and it was attributed to eczema and dish washing gloves and such... But now I believe it's related to PBC. I try not to relate every ailment I have to PBC, but it's difficult not to, mostly when you read about all the symptoms associated with this condition.

Seybeaute profile image
Seybeaute

This is amazing ! I always wondered why I get those bumps in the sun I hate it they disappear with time but it’s happened for a while now ! Thanks so much for posting ! Claritin ! Who knew ! I’ll try it !

ZEMR profile image
ZEMR

You are welcome Seybeaute. I have seasonal allergies, and I have always thought Claritin was never effective on me. I switched it to other allergy meds. But for this rash, and to take it for 3 to 4 times a day, I had no idea either. I asked the dermatologist, if it was safe to take it that often in one day, mainly as it says 1 pill a day, but she said it's safe, and to take it with that frequency only when I feel the rash is coming, then stop it when it goes away.

You can probably research it further and run it by your doctor or pharmacist to make sure before you start.

I am thinking to start it soon too. Will take my doctor's word for it, but will read more on it as well, just because that's how I am. My GI yelled at me one time and told me not to read any more :)). I'm trying to read more scientific facts though, not much about the horrific experiences of some people because those ruin my life and make me focus on the bad instead of enjoying the present.

Here's to our best health ever! We should hang on to our optimism despite all the annoying symptoms we experience :).

uandisharing profile image
uandisharing

I have little bumps on my skin. But, nothing like you're describing. But I read on here to have baking soda baths. Not sure if it will work. I don't think it will harm. Good luck

ZEMR profile image
ZEMR

I would like to give baking soda a try. I even read about diluting it in water and drinking it before the digestion of a meal begins to slow the autoimmune response. I need to read more about this as it may be a great way to slow our condition if daily baking soda use is not harmful for health. It’s still to be seen.

W_larks profile image
W_larks

Brilliant share !! Currently all over my arms from sun 😢 I use Rona Ross prickly heat lotion ! It does help a bit xx

ZEMR profile image
ZEMR in reply to W_larks

It’s very annoying I know. They also are getting more frequent on my fingers and palms of my hands these days!!! I’ve yet to buy Claritin as I do take other allergy pills now but will give Claritin a try soon. I think sweating it off is working for the facial rash, not so much for the tiny blister like one on my fingers... :(.

DVISION profile image
DVISION

Sweat therapy works best for cholinergic urticaria.

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