Itching (I know it is redundant)

[Q8Cooper]

Hi all,

I hate to write in about itching as it is such a common problem, one would think I had all the answers by now. A recent antibiotic treatment of Cipro has set me off. I am blessed in that I don't live with itching all the time. But when I do get bouts of it, I feel as if I need to be put an psyc. restraints. I have tried the Colestyramine, Benadryl, "ice" topical, and cold packs. I am passing 48 hours without sleep.

I never had the "itch" prior to starting OCA, but as that is my only treatment option for my PBC, you do what you have to do, right? In a temporary laps of sanity due to the itch, I took very fine grain sanding sponge block to my skin. Irrational at the time, I thought it would be less harmful then to continue scratching. I was very gently exfoliating what I thought was dead skin that was a snow white powder and was actually smoothing bumps of some sort of build up. Folks don't try this at home. Because you are itching you don't feel the normal irritation of giving yourself a case of road rash, which is exactly what I did.

My sheets had to be bleached out as apparently I am scratching to bleeding in my sleep.

Any one have some tips that REALLY work. I know the doc's have a list of what to try. But I would like to hear from some of the more positive cases where the itch (the insane type) has been well managed as to not effect quality of life.

Thanks! and God Bless!

Kathy

[Sachin1234]

Sorry to hear about your itching problem, Kathy😔

I don't itch as I used too after I started urso. I do get once in a while in a weird body places like in my palm of my hand and feet tho and at that I just take Benadryl and keep myself busy so I can forget my itch. I also do exercise and drink lots of water as well..these days when I shower I only apply shops in sweaty areas..I heard high sugar and sodium also make itches so I cut down on those as well..

Good luck

[Shulsey]

Have you tried soaking in a tub with some Epsom salt? I haven't done this myself because if my itch gets to a certain point I take a benadryl. But I have heard of some PBC'ers soaking.

Give it a try, could help😊.

Stay strong❣️

Shannon

[Q8Cooper in reply to Shulsey]

Hi Shannon,

This is what I call my OCA itch because I didn't itch prior to OCA. With that said I am glad I have that treatment! I have tried soaking in Epson salts, and apple cider vinegar. Both help heal damaged skin from scratching, but don't stop the itching. Maybe I will just buy a bag of ice and take a polar bear bath

Thanks for the support.

Kathy

[Shulsey in reply to Q8Cooper]

Have you tried baking soda in the tub. I know it's great for your skin but not sure if it'll help the itch. Im on Ocaliva also, plus Urso. I get a breakthrough itch that's insane but it isn't constant anymore

[Flower-powr]

Hi Q8 cooper , I am awaiting a referral to rheumatologist for possible PBC so I'm not at all knowledgeable but would you think of trying homeopathy. My friend is studying this and it's very interesting. Some great results for certain ailments. It's worth a try. Maybe calamine lotion might help too. I'm no expert but just a thought.

[Rockie in reply to Flower-powr]

Flower-powr. I am a strong believer of Homeophatic meds. Use it together with Ursotan and Vitamins. Bath in Epsom salts. No perfumed soaps and creams. No gluten, no fatty foods. Still itch, but is more bearable

[Q8Cooper]

Hmmmm I hadn't thought of asking a homeopath specialist. I will try to see what I can find out. I have tried most over the counter topicals. Some cooling agents helped before I scratched myself up and then they stung and made it worse.

Thanks for the ideas!

Kathy

[butterflyEi]

Hi Q8Cooper

I was diagnosed in 2006 but the itching did not manifest itself until 2014 after the death of my mother. It took a further 9 months before I could see a specialist here in the UK. I started cholestyramine, one sachet before breakfast and one sachet after breakfast. This did not really do much. Naltrexone was added to the mix but I was very aggressive on that tablet so was prescribed Rifampicin. I am now on 300mgs twice a day as well as the cholestyramine. Life returned to something close to normal but during this summer the itch has started to break through again although nothing to the level that it was before. I understand that for those with the irretractable itch of PBC the only alternative is a transplant and even then the itch has been reported to have returned.

I was at one time prescribed Cetirizine two tablets twice a day which worked for a short while. Currently and without medical advice I have added those to the day which has again for a while reduced the itch.

best wishes

[Rockie in reply to butterflyEi]

HiQ8Cooper. I also was prescribed Rifampicin once, but was told by Pharmacist that this is normally prescribed to TB patients and it is an Antibiotic. No ways I will use that. Will rather endure the itch. Must be bad for liver and body on the long run. That is when I started seeing a Homeopathy doctor who goes out of her way to help me

[Q8Cooper in reply to Rockie]

Hi Rocky,

When first diagnosed with PBC and finding out I was allergic to Urso I went to a Homeopathy doctor. I really thought this was the way to go, especially since at the time I had no medical alternative. I spent several hundred dollars in test to include testing my hair. I was pretty excited about being put on therapudic levels of vitamins and really cleaning up my diet (which I eat very healthy now). But the course of supplements cost $500 a month and I couldn't afford it. I wish insurance were more open to Homeopathic practitioners. I am glad for you that you can be seen by one. I will keep in mind your suggestion that antibiotics may not be the best course of action.

Thanks!

Kathy

[Rockie in reply to Q8Cooper]

Q8Coopr. <My dear friend, make no mistake, here my Medical Aid does not contribute towards the Ursotan. So we have a very costly disease and to get old, I am moving on to 77, is not cheap and for the sissies

[Q8Cooper in reply to Rockie]

Dear Rockie,

You are absolutely right. PBC is a costly disease. I am very sorry that you don't have coverage for the Ursotan. How dreadful! I admire your courage!

Kathy

[Rockie in reply to Q8Cooper]

Q8Cooper. Motivational letters and my blood results, biopsy etc were sent to Discovery Health and they came back offering to pay for liver transplant. I have several other autoimmune diseases and due to my age I would not even consider it. There is no guarantee that my immune system will not attack another liver as well. So its pay up and smile!!

[Q8Cooper in reply to Rockie]

Wow! I was told if I got a liver transplant my auto-immune would attack it but slow enough that it should last the duration. I was also told that any major surgery after 70 is a big deal on the body most likely not advised. just too much risk involved. My doc has actually advise me at age 56 to consider not having a transplant. He doesn't think my quality of life would be worth going through it. That was a surprise to me as I thought I was still fairly young. But I also have four liver disease and all auto immune based so they will come back. So dear, let's just enjoy each day as it comes.

Kathy

[Rockie in reply to Q8Cooper]

Q8Cooper. Yeah you right. Let's take it day by day. My Medical Aid know my age, but that is the way it is "Pay up and smile".

[Q8Cooper in reply to butterflyEi]

Thank you, I will write down the names of the medication and take them to the my GI doc. He is pretty much on the side of doing what ever it takes to save the liver verses treating the symptoms. I understand where he is coming from as he almost lost me to an allergic reaction to Urso and I had to go five years untreated until OCA came available. Six months on OCA and it is looking more and more like I am not going to respond to it. I am just thankful for the information to give to my doc for discussion.

Best Regards,

Kathy

[Hidden]

keeping cool as you can.. particularly at night.... and keep feet out of covers.

unfortunately a sleeping tablet is the only way I could get any sleep.... and daytime just distraction. antihistamines didn't really help but took the edge of to help sleep.

cazer

[Q8Cooper in reply to Hidden]

LOL I love the "keep feet out of covers" Yea, I use Benadryl OTC to help me get a little sleepy. It doesn't do a thing for the itch but if I can knock myself out, I'll take it. Doc won't prescribe a sleep tablet for me. I have one of those soft square sanding blocks I use to scratch so I don't cut into my skin. I am going to take it to my next appointment and use it right in front of him so I can get my point across that this is no regular itching. I can't really blame him as all of us patients and doctors have so much to learn about PBC. Thanks about the tip on the feet.

Kathy

[Hidden in reply to Q8Cooper]

oh a hairbrush is brill on the feet to scratch without damaging skin... one of cheap plastic ones. cazer

[Q8Cooper in reply to Hidden]

Yea,

I like those too. Hadn't used it in a while. I think I will try it again. It is crazy how we learn independent of each other to do the same things.

[Rockie in reply to Hidden]

Good idea. Cheap plastic hair brush

[Rockie in reply to Q8Cooper]

Pasta Spoon also ideal for scratching (plastic one).

[Tapps in reply to Q8Cooper]

Dupixent shots and Steroid cream

[Rockie in reply to Hidden]

cazer. Yes I agree. Without sleeping pill I will not sleep a wink

[4pjx__]

Boy, you're really going through it, girlfriend. I hope you can find some answers.

Pam

[Q8Cooper in reply to 4pjx__]

Thanks Pam! Encouragement always helps. It was a learning curve for me. I guess on OCA, my liver didn't like the Cipro antibiotic. How are you doing now that you have had a little more time to process your diagnosis?

Kathy

[4pjx__]

I'm doing pretty good. Although I did wake up tired and achy this morning. Don't know if it's the PBC or what. I had a day like this last week too. I wonder if it's a sign of my liver struggling? Thanks for asking, though.

[Belliver]

Hi Q8cooper, are you sure you are not allergic to cipro aantibiotic? I am allergic/intolerant of levaquin ( same family of drug) & had rather unusual symto s for quite some time afterwards, so now I refuse that family of drugs.

[Q8Cooper]

That is a very good observation. And something I had to question myself. I also question if I am allergic to OCA as the slightest change in any medication tends to set off the itching. I have never been allergic to any penicillin llefore. It just may be that my ability to tolerate things is changing. Mystery to be solved. Will let you know as soon as I figure it out as I have multiple on going UTI's since being diagnosed with PBC. We'll see what happens as time unravels the mystery.

[Sachin1234]

How long you have been pbc and aih?

[Q8Cooper]

Diagnosed PBC, AIH, NASH, and Sarcoidosis of the liver by bloods, positive AMA and liver biopsy 2012. Oddly enough I came down with a severe bout of joint pain (every joint hurt in my body like a case of viral arthritis) around 1997 - 15 years prior to PBC and AIH diagnosis. I had a positive AMA. The doc knew I would come down with some sort of auto immune but didn't have enough data to know what it would be. So I can say I was dx 5yrs ago, but we don't know how long for sure prior to that it was progressing. I could have been developing it as early as age 30, most absurdly I met one of the criteria by age 40, the positive AMA. We weren't looking for it and being asymptomatic went undetected for many years. Why I have four diseases is also a curiosity. I have heard of other PBCers that have a couple or even as many as three. I don't know anyone else yet that has 4 but I am sure where there is one there has to be more.

[vicary]

Hi Kathy , OMG do I know where yr coming from my itching is so extreme it reduces me to tears and makes me not want to be here anymore ( don't mean I think of ending it all !) Just don't want to be me anymore . I've scratched so bad at times that my body is covered in big red heat lumps and massive purple bruising !! I use aqueous calamine cream for the lumps and it really helps I also use the aqueous 2% menthol cream to help cool my body , I know everyone recommends cool showers or baths but to be truthful I've found they make my skin so dry I itch more so I just have normal baths now and cover myself in aveeno. Like you antihistamines don't work cos it's not a histamine problem but I take piriton every couple of days they help knock me out , but to be honest the only way I really get any sleep is by having just a cotton sheet and my large fan blowing on my body until I'm freezing I then manage 4 -5 hrs sleep . Best thing my other half ever got me . We can't end this itching my friend but taking the edge off is like Christmas. My heart goes out to you . I'm having a liver transplant next yr would be sooner but I'm on some meds for my feet for 6 months that aren't good for the liver , well this one is struggling now but don't want to harm the new one .

[Q8Cooper]

Hi Vicary,

Where are you having your transplant? I also was wondering how they determined in your case that it is time for a transplant. I will look into the piriton and ask my doc if it is something I can use.

My fore arms feel very bumpy under the skin. Topically I get outbreaks of red bumps and rash with PBC flare ups. I have scars on my entire body now. Glad to say I am returning back to my lower level itching until the next time comes again where I get the insane itching.

Thanks for the feed back.