PBC Itching is Taking Over my Mom's Life!

[JayyGee09]

I'm at a loss. My mother was told she had PBC about 3 years ago following months of inexplicable full body itching. From my research, it is unclear to how many of those diagnosed suffer itching on this scale, but it is taking over her life. She takes Urisidol, but other than that has tried various other remedies all to no avail. She cannot sleep, she cannot function, she has scars and scabs all over from the scratching. She frequently turns to antidepressants and alcohol to dull the constant itch. I can't say I blame her, but I know that she is only continuing to harm herself this way. I'm worried sick and was wondering if anyone out there has ever encountered this, or has any treatment plans or words of wisdom to give. Anything will help, thank you so much.

[Is4bell4]

My daugther has PCS primary schlerosing cholangitis and I am not sure it these

are the same??

Her itching is bad, put I wonder if your mother is making it worse by alcohol.

The itching is caused by the liver trying to fix itself. Alcohol may be making the

condition much worse.

I know it is a bad disease and it passed on the in genes. My own genes are

reponsible for my daughters problems. I have UC.

She will not thank you for this but imo the condition maybe getting worse through

the drinking.

Good luck to her,

As I had said my daughter has similar if the same and has been told many

times not to take even the smallest amount as her liver will not cope with it.

It all stems from the Biliary

Take care

xx Ros xx

[Is4bell4 in reply to Is4bell4]

I should call called the disease PSC (primary schlerosing cholangitis) not OCS sorry.

[Silvers]

I have been suffering with the dreaded itch for nearly two years now and I now take sleeping tablets at night so that I can function during the day but even then it is a struggle. Has your mum tried sertraline, chlorphenamine, low dose naltrexone, rifampicin, etc. I have tried a number of drugs that either make the itch worse or only work for a while but others have tried the aforementioned drugs and they have worked to stop the itch. Please also note that urso doesn't work for everyone and in my case when I took it my itching became worse. Some people are lucky and never get the itch and others well you can see what your poor mum is going through.

Please read my blog FEDUP.com as I am currently going down the route of Plasmapheresis. I have had two treatments already and have seen an improvement. I have been messed about by the medical profession for years and taking no more. I am going into hospital next week to get more Plasmapheresis. This isn't a cure but I am liaising with a lovely lady who spent 14 days in hospital and had a treatment every second day and with urso and rifampicin she has been itch free for 4 years so this lovely lady is keeping me positive and I hope to do this for others are people don't really understand how bad the itching is. medical-dictionary.thefreed...

I will keep posting updates on my blog but maybe I should change the name FEDUP.com so that Itching and Plasmapheresis are somewhere in the title for others who are suffering.

Sending you a big hug too as it is difficult to watch your mum with this horrible illness and itching but I am sure she appreciates your help and understanding. She is lucky to have such a caring child and you should be proud of yourself. Have you been in touch with the PBC Foundation in Edinburgh pbcfoundation.org.uk/ they are so helpful and understanding.

Hugs

Sx

[Mary-Lou in reply to Silvers]

Hello Silverstone, I have had PBC for just over 20yrs.i was diagnosed with stage 4 Cirrohsis. I was given 5 yrs at the time. The itching was so bad I drew blood often. I eventually found the High Strength Liquid Fish Oil changed my life completely. I have not itched At all since taking it!! I also take combination 12 minerals. Besides Ursofalk that is all I take and I am 64 yrs old. I hope this helps you too.

[gwillistexas in reply to Mary-Lou]

Wow! Your story should fill many of us with hope. My thought had always been, when you give up hope, you give up everything. By the way, which minerals do you take?

[Mary-Lou in reply to gwillistexas]

Hi, the minerals are Schuessler Tissue Salts General Combination 12.

I live my life as if I do not have it. In fact I am in the best part of my life and feel 20 yrs younger! I don't allow PBC to stop me in any way. I believe we can heal ourselves (with the help of medication too) by being positive in thoughts and also I do meditation. The colour yellow is for the liver, so I visualise my liver being healed just before I sleep at night.

Don't let it become your life.

Live it to the fullest and enjoy every day in a wonderful way.

All the very best wishes to YOU. (I know I keep surprising my specialist. You could too. ☺️ Mary-Lou

[gwillistexas in reply to Mary-Lou]

Thank you! You are one truly amazing lady. You should our role model😉🌹

[Mary-Lou in reply to gwillistexas]

That's so lovely of you to say so. Thank you for your kindness. 😚

[gwillistexas in reply to Mary-Lou]

You are so very welcome & thank you for your encouraging words. I needed that💖

[Mary-Lou in reply to gwillistexas]

If you want to rest your mind at any time. Go to YouTube Mary-Lou's Guided Healing Meditations. I wrote and recorded 7. Pick the yellow one and take 20 minutes for yourself and listen to get peace. You may fall asleep, but you will still be getting the healing. 😚😚

[gwillistexas in reply to Mary-Lou]

Oh I will! Thanks✨

[gwillistexas in reply to Mary-Lou]

Mary-Lou...I didn't see the yellow. I saw the heart & others?

[gwillistexas in reply to Mary-Lou]

I honestly am absorbed in it right now. Couldn't take Urso. Now all the scare with Oclavia. I think once all that is settled & I know my med isn't going to kill me, I can get a more positive attitude about my life. Till then, I'm up in the air. Like being in the ocean with no anchor. Horrible feeling. But I'm going to keep everything you said in my mind & hang onto that. 🌻

[AOG1987 in reply to Mary-Lou]

Is there a way to contact one another outside of this forum!

I would love to know a it the minerals.

[e-mail]

[Mary-Lou in reply to AOG1987]

Hi, yes my email is [e-mail]

[Sachin1234 in reply to Mary-Lou]

What medicine you take for pbc?

[Mary-Lou in reply to Sachin1234]

Hi, I take Ursofalk.

The minerals (not vitamins) are by Schuessler. They are Tissue Salts. I use the General Tonic Combination 12.They are not expensive at all.

The fish oil is Ethical Nutrients Hi Strength Liquid Fish Oil.

[Sachin1234 in reply to Mary-Lou]

Would you please name and strength of that fish oil and all the vitamins u take

[Sachin1234 in reply to Silvers]

Why not you post here rather than in your own site

[Mary-Lou in reply to Sachin1234]

I just have Sachin. I hope it helps you. Take care Mary-Lou

[Pheebe in reply to Silvers]

I looked for your blog, but could not located. How are you ?

[Silvers]

Sorry also forgot to mention get your mum's GP to refer her to a dermatologist as I have heard that UVB light therapy can help with the itching. I did have an appointment but had to cancel as was supposed to be going into hospital last week but that also got cancelled. Will make another appointment once I have had Plasmapheresis treatment.

Also I am not sure if you are in UK or abroad but also get your GP to refer your mum to someone who specialises in PBC like Edinburgh or Birmingham as loads of GPs and gastroenterologists really don't have a clue!! x

[Hidden]

Hello JayyGee09.

Well I too suffer from the itch but it is mainly confined to night. It does drive me mad at the best of times. I started itching all over at random back in early 2010 and by the end of 2010 I was diagnosed with PBC and started on urso Dec 2010.

I had read about PBC in the months prior to diagnose and did read that urso for some can help a bit with the itching but it seems only a rare few find that taking urso eradicates it 'temporarily'. I say temporarily as there are folks out there with PBC who do not itch and who may never itch and some who do eventually start ot itch.

It seems there is little to be understood about the itch but it is thought that it is used bile leaking out from the bloodstream on its way back up through the blood system to the liver (the liver actually breaks down used bile and recycles some of it). My addition to this is if does happen like that which figures due to the itch occurring at random anywhere on the body (I suffer with my legs from knees down and feet usually at night but also feel other parts of my body too), is that the used bile, apparently the salts reacts with the nerve ending giving us that itch feeling. It can be hard to describe the itch to someone who hasn't experienced but to me it feels like I am brushing against nettles. The moment you reach out and itch, it starts elsewhere on the body but you can itch and itch and it doesn't actually go away like a normal sudden itch would in someone who hasn't got the problem.

I have tried allsorts in the last 3yrs and I have to say that odd days when I don't itch at all which seema bit rarer and rarer nowadays, I am usually frustrated as I cannot recall how it has stopped temporarily. I have used Epsom Salts in the bath and find at night a couple hrs before bedtime that does seem to stagger the itch if it occurs. I can sleep thru the itch but most nights I wake up several times and last night for instance, went to bed just before midnight and was still awake at gone 3a.m. and boy did I feel the itch at random.

Alcohol isn't my idea of attempting to alleviate anything and it could be making the itching worse. From one PBC sufferer to a daughter (sorry if you are male) of another, I can tell you sometimes myself when I've had a bad night and the next night is looking no better, it does really get you down and it is a constant thing with the itch, never seems to really let up at all. You do feel it is dominating your life if you suffer from it 24hrs a day. For me I start getting fidgety towards the evening meal as I know I am starting to feel restless due to the PBC.

I've so far not been offered or asked for any drugs to try to alleviate the itch as if possible I don't want to take anything. I have tried various things and seen what has happened and although it might sound daft now, trying to figure out what the hell is going on with this PBC and the itching (as that is my only sympton really), it does keep you plodding despite it all.

I did find that a bath additive like E45 bath oil and more recently Oilatum junior bath additive is quite good to keep the skin smooth and moisturised. I think it does help a bit. Trying to keep cool in England at the moment is a bit of a nightmare but I find when I'm cool I don't seem to feel the itch the same. I too have little pen-sized scars and the odd scabs on my legs below my knees due to the itch too and behind my knees I know my skin has taken on a slightly bronze tone with all the itching.

I keep reading about research into PBC and new drugs but my opinion is that realistically I'd rather someone found some way to eradicate the itch of PBC (and any other liver disorder as you can itch with quite a few) as that would to me surely be a far better start than at present trying to cure it. I know that one day when it is fathomed out, I do think that with what damage has been occurred so far, it will remain even if the PBC is halted and if the PBC was to halt tomorrow and never restart, I know I'd probably still have the itch to deal with due to present damage.

Hope this has helped somewhat, sorry I can't give you a much better answer as I don't have one but Epsom Salts in the bath is definitely a pretty good temporarily reliever and also I've thrown in cider vinegar too of an odd occasion as that is supposed to be antifungal/antibacterial. You can actually drink cider vinegar but I'm not sure how to or what with there.

[Lynne-k-g]

Hi JayyGee09'

I suffer from itching, which is usually confined to night time, I could never sleep with it and it drove me made, my GP prescribed me hyrdoxyzine hydrochloride, I take two 25mg tablets at night, they can also cause drowsiness, so can help with going to sleep. I asked my GP why it is at night when I itch the most, he told me is because the liver works most at night and this is why PBC sufferers itch most at night. I hope this is of some help, and if you can get your mum to stop drinking it will reduce the itch a bit and prolong her life. Hope this is of some help to you, good lucky and thinking of you and your mum.

[sistergoldenhair in reply to Lynne-k-g]

Hi honey, I agree w/Lynne, I was dx 18yrs ago and used to scratch myself w/knives, forks, combs or anything thinking it would help, I used to tear the skin and bleed from scratching all the time, never could sleep and just wanted to go crazy all the time. The hydroxyzine really helped after awhile, I think it depends on how bad the itching is but it worked the best. Sarna lotion or Aveeno lotion and baths helped for real short periods, I think you really have to try to get it out of your mind too. A couple times I ran out of my RX and the pharmacist advised OTC Benadryll. I went through the drinking thing too, try and help her to get past that before she wants to drink all the time, because alcohol isn't good for even and healthy liver. Thoughts and prayers, cyndy

[Lynne-k-g]

Hi JayyGee09'

I suffer from itching, which is usually confined to night time, I could never sleep with it and it drove me made, my GP prescribed me hyrdoxyzine hydrochloride, I take two 25mg tablets at night, they can also cause drowsiness, so can help with going to sleep. I asked my GP why it is at night when I itch the most, he told me is because the liver works most at night and this is why PBC sufferers itch most at night. I hope this is of some help, and if you can get your mum to stop drinking it will reduce the itch a bit and prolong her life. Hope this is of some help to you, good lucky and thinking of you and your mum.

[bchiusano]

I posted this for another discussion board, but it's important.

Hi All...my mom was diagnosed in 1994 with PBC. She has suffered with the itch for most of the past two decades. Here are some tips I know that works (sometimes intermittently) for her:

UV Rays: Get in the HOT sun (Think Mexico, Equador, anything by the equator)...The real sun, apparently tanning beds do not work.

Eliminate Carbs: As my mom cut down on carbohydrates, her itching reduced.

Zoloft: This had an off-label effect (for while) of relieving her itching (and I've been reading articles that Gabapentin may do the same...)

Chemical Peels: My mom is very good with pain, so she opted to do painful chemical peels (normally reserved for vain individuals) on her face & back. This usually provided temporary relief up to a year.

[gaby1011]

hi bchiusano,

Thank you for posting the info re the itching.

I have it. It's actually the reason I went to the dr. in the first place.The tests he ran diagnosed the PBC

The itching I have has gotten worse since starting urso. There should be a better name for the symptom other than "the itching." It is so much more than itching. It is a burning, shooting, stabbing pain that I feel down to my bones.The pain with it is so bad that I can't sleep at night which makes for awful days. So even if there is a break in the itching during the next day I'm too exhausted to do anything. I have infections on my arms and legs from the intense scratching. I have scars and discolored skin from it. It is seriously affecting my quality of life.

I did eliminate most carbs. They do make it worse.

I was told to stay out of the sun because the urso causes you to burn very badly. I am going to try this because I love being outside and gardening. Unfortunatley you don't really know if you've burned until after you come in for a few hrs. I've always thought the sun had healing powers and was upset that I had to be worried about it. It's worth a try.

I have tried the gabapentin. I took it on my own before I went to the dr. It did not help at all.

I'm on Prozac but will ask my dr. if switching to Zoloft would help.

I'm really confused about how having chemical peels would help since they are a topical treatment. Did your mother have the peels on her arms and legs? Did they help immediately ?

[mandilou]

I've just been diagnosed in April with this after the shocking itch,on the urinal 4 tabs a day which I was scattering but now do 2 morn and 2 night ,my itch has flared up again so bad I'm going to try th ed m scattered again and go for my ct and more tests,I've got a young family and I look and feel revolting,Dr suggested antidepressants but I keep putting it off but think I'm just going to gave to do it to c if it helps,I'm feeling so miserable right now and as the warmer weather comes it will be worse not being able to cover my skin

Let's hope we can somehow get relief from thus

[Rockie]

JayyGee09 I have that terrible itch. It seems to be getting worse. The more we stress about it, the worse it gets. To take alcohol will definitely make it worse. I cut out gluten, fatty foods, no fast foods, and still I get these attacks (that is what I call them), where you itch tremendously. Sorry for your Mom I know the feeling, Wish I had a solution and people very unsympathetic about out condition.