Hello all just following up on here as I'm in tears not only due this being the day my sister transitioned in 2104 just 3 months after my mommy but I'm miserable from this itching and I mean terrible itching especially at night my feet, legs, hands, eyes and even head!
I can't believe that none if the medications they tried over the years worked I tried just about everyone mentioned on the PBC blog and now 3 sessions of plasmapheresis didn't do anything. I am now waiting to hear from my hematologist as the doctor at the blood facility said people usually have them done more often like 2 to 3 days in a row but because of my vein issues they have trouble finding it may not be good for me. They can put a port in my neck but dr didn't recommend for me. So I'm waiting to hear from my University of Michigan dr to tell me I need liver transplant 😔Please keep me in prayer I don't want a transplant in Hope's of stopping my itching bad as the itching is I'm scared because my liver is good "no scarring" or anything according to two biopsies (April 2015 & August 2017) and ultrasound just recently. I will have to trust that my maker knows what is best. #peacebestill
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Magnetic Resonance Elastography done. This will tell you how much fibrosis you have. Have you tried tanning beds for the itch? I read somewhere that it has helped some PBCers.
MRE had an accuracy/sensitivity/specificity/positive predictive value/negative predictive value of......
0.97/90%/100%/100%/90% and 0.98/92.3%/96%/92.3%/96% for detection of advanced fibrosis and cirrhosis, respectively.
I never done tanning as I never needed to I am of black and native descent. Thank you so much I'm happy to hear there may be another option for this dreadful itching..
Hello, I’ve no answer for you as to the itching , but thinking of you as I know how awful this can be, I’ve just woke up and it feels I have flees crawling over my shoulders arms and head , it’s not nice!! People don’t understand to them it’s just a itch. Hope you get sorted out soon , and get a bit of peace, your in my thoughts ,
Hi, I know all to well what you are going through. I spent years living a miserable existence.. stayed home, couldn't stand clothes that weren't a moomoo. or shoes and socks on. I would try to go out and be in constant fear of burning itching and hiding in my car. I ended up drinking for days to get some sleep.. I tried so many meds... I ended up in the hospital last year due to a drinking episode.. they prescribed me gabapentin.. have you tried it? It has been nothing short of a miracle for me!! I have already destroyed my liver, with having PBC and drinking. I wish I would have found this sooner... I pray that you find your miracle for itching relief..
Dyfry yes I tried gabapentin it messed with my blood pressure and gave me palpations so couldn't take after trying for two weeks and no relief of itching I discontinued taking it. I am going to mention Fexofenadine that others on here said worked for their itching. Thank you so much!
So very sorry you have not found a solution to the itch. Transplant may be the only option but as you sound so stressed and understandably after losing loved ones so close to each I wonder if the stress has exacerbated it. I know listening to guided meditation recordings helped me when I said goodbye to my lovely Mum which was shrouded in other family problems and triggered the itch for me.
My cocktail of drugs is cholestagel, Rifampicin and Sertraline all for the itch, the benefit I gain from the anti depressant Sertraline is it evens out my mood for the better but I still itch especially when stressed.
Recently I found out I was zinc deficient and have meds for that now. Recently I read magnesium may help the itch so I thought if I did not know I was zinc deficient maybe I am magnesium deficient as well even though I use a magnesium water filter. Last week I bought a magnesium spray and with fingers crossed I can say the itch has improved not gone but not that dreadful have to dig nails in deep feeling. The person who posted was using magnesium flakes in the bath but as I cannot get into a bath the spray works for me.
I don't know if that would help you but anything is worth trying when we are desperate.
Hi there , I had 3 months of plasma treatment 3× a wk and it did nothing to help , my itching was so extreme there wasn't a part of my body that didn't itch , my palms and feet also burn , whole body full of scabs and bruises , slept an hr a night for 2 yrs got so sleep deprived and so low didn't want to be here anymore , I didn't want to die I just wanted to go to sleep and not wake up I couldn't take the pain anymore , everything irritated me , clothes , shoes , bath , heat , sun , I became a hermit ! , im going to try cut a long story short , like you no medication had any effect what so ever ! Basically because its bile in our blood stream that then crystallizes, its toxic ! I was referred from the consultant I was with because he said therewas nothing more he could do for me to one of our top leading liver hospitals and this changed my life I was introduced to a PBC expert who has spent many yrs researching the itch , as I said long story short , I am now on the transplant list as there is no cure , but they knew I couldn't continue to live like this whilst waiting a transplant so the PBC expert put in a nasel biliary drain , this drain is straight into the bile duct up through yr body out through yr nose and drains off the bile into a bag , i cannot tell you how brilliant the results are , it takes some getting use too , im the 3rd person to have it done and the most successful because I stuck with it and know more about it than the experts now , its given me my life back until i get the transplant ( because you can't have this for the rest of yr life its a temp fix , this is my 2nd drain as it usually has to be replaced every 6 -8 months , you will prob have many questions , check it out on line , but ask me anything , i am more than happy to help x
Reading this I know the feelings well. I’m struggling and feel like my life is non existent. I can barely go out of the house. Your post Is like reading how I’m feeling and living my own life. I don’t think people unless they live with that intense PBC itch get how low you feel. I’m on the process of going through all the different medications to find one that works but nothing as yet is helping. They don’t rush to send you the next one. I just want to sleep I’ve even begged my doctor to give me sleeping tablets which they don’t let you have them. I just need some kind of rest bite from it. They just don’t get it, maybe if I could sleep I could cope and function in the day but still no help. I think I’ve reached that point which I hate to say I’m very depressed and feel this illness is so damn cruel. Reading your post and hearing you are finding a resolution to your itch fills me with some hope as everyday I pray mine will go. 😟
Hi , sorry my reply is so long after yr post ! but yr story is identical to mine ,except I did 3 months of plasma treatment 3 times a wk and it still didn't work ! I'm so sorry that I can give you hope of yr itching stopping because it won't it just gets worse to the point you have no quality of life what so ever , for 2 yrs I was lucky to sleep 1-2 hrs per night it was total hell on earth and although I didn't want to die I did want to go to sleep and never wake up , my body was a mess there wasn't a part of my body that didn't itch .... seriously I itched everywhere and I mean everywhere , my skin turned to leather and was covered in lumps , scabs and severe bruises , I was damaging my body with scratching , nothing worked , not meds , creams , cool baths you name it I tried it ! I was diagnosed 9 yrs ago and was fine for the 1st few yrs but then the itching stepped in , I had every treatment going , meds , creams , ubvtreatment , plasma exchange , got no relief from any of it ! my liver too was in good condition but to look at but stopped doing alot of its normal jobs , I stopped absorbing vitamins , got osteoarthritis, sjogrens syndrome but to mention a few . In September 2017 an amazing doctor fitted a nasel billiary drain and the results where amazing , it takes the bile out that yr liver no longer can deal with ( that's why we itch , the bile in our blood stream ) I got approx 1 yrs relief , still had the odd itch but nothing I couldn't cope with ( Google nasal billiary drainage ) unfortunately my bile ducts deteriated with the progression of PBC so in August 2018 I was placed on the transplant list ( so scary I can tell you , I didn't want a transplant ) but the itching returned with avengenous more than I could endure and I hit an all time low to a point I wanted to end my life , extreme I know , I class my self as a strong lady but it beat me ! I had my transplant on the 28th Nov 2019 so im 8 wks post transplant , I won't lie and say it's an easy ride , good and bad days and I had complications after my o but I fight hard I want my life back and I will have it !!! I can't believe how far I have come in such a short time and I know I've still a long way to go , but I keep positive and cope day by day , the support and love I have from my family & Friends is amazing and I feed of it , my itching stopped instantly and I now see a future and wake up grateful for everyday , I hope with all my heart you find the answer for you and wish you every happiness . if you have any question don't hesitate to ask, there isn't much I don't know about this terrible disease !!! x
Hi vicary thank you so much for the information. I want to know more about the nasal billiary drainage is it inserted through your body and into your nose? I have no luck with with most procedures so I get fearful. I work full time with all my itching but I really don't know how much more I can take 😪 I will pass this information on to my doctor. Can you tell me how long the liver transplant was and do you need to be off work for somedays. Also do they give you like partial liver or entire one. I never knew that ine can live with just half liver etc.
Any information will be appreciated. Thank you
I am so glad you understandand know that I am not exaggerating. It's wearing me out on top of me already dealing with anxiety.
Hi , I had to go part-time the last few yrs I couldn't cope anymore , I was so exhausted and the itch made me cry all the time ! I was in theatre for 10 hrs it averages between 8 - 12 hrs , my liver came from a donor so it was a whole Liver and with PBC you can only have a none stressed liver, that means a brain dead donor as the liver is still getting a blood supply so isn't stressed as with a heart attack donor it isn't getting a blood supply so it is a stressed liver . You can have a living donor liver which means they take part if the donor liver and it replenished itself to a full liver when transplanted , it is usually donated by a close family member, in my case that would have been my son or daughter ( if they matched) that just wasn't an option for me , my job as their mum is to protect them not put them at risk , I wouldn't even consider it ! The nasal billiary drain goes from yr bile duct up through yr body and comes out of yr nose down a tube to a bag that you empty when it fills , although it can be awkward to deal with and get used to the benefits so outway the latter, I believe it saved my life , they say I know more about the drain than they do now lol , it works by gravity drawing the bile out , I was the 3rd person to have it and I had it the longest because I learned to except it and get on with it , I learnt to take it to pieces and rebuild it when it needed new parts on the outside , bile is sticky and can cloth it up , if It stopped working I figured out why and if I couldn't it was because it needed replacing ( usually after 6 mths ) I had mine replaced twice , yr in and out in a day ! after the transplant I was in hospital for 3 wks but its usually 2 but I had a few problems , most don't, it isn't a quick recovery its the biggest op you can have , the liver is the biggest organ in yr body and does around 500 jobs ! I won't lie to you and say it's a walk in the park its damn hard , the hardest thing I've ever been through , and I still have bad days , you go back to work when you feel ready but you see won't work for the 1st 3 months its not possible , I'm returning to work on the 1st of March but I have a new job working from home so it's easier for me to return ! I do not itch anymore but I will never forget it , I could not continue as I was it was hell on earth with no ending , what I'm coping with now will heal and come to an end and I'm so excited about that . Please google nasal billary drain will help you to understand more and defiantley talk to yr doc about it , message me anytime will help with advice as much as I can . wishing you all the best
god bless you too , I totally and utterly understand yr pain . Take care xx
Oh thank you for all the information I so appreciate it and will discuss with my University of Michigan hepatologist. I had no luck with 2 liver biopsies done to confirm I had PBC . My first one I had internal bleeding and was hospitalized for 7 days. The second one made me very sick afterwards so I ended up in ER.
I really must say that's wjy I fear transplant and keep telling myself since my liver is good ultrasound last year didn't reveal anything no scar tissue or sclerosis so I say the itching will disappear but not yet after 4 years still dealing with it. I wonder sometimes how long before the children's liquid benadryl do me harm. I take a cup full just about every night to get sleep.
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Liver Biopsy Results today.....
Ursofalk and itching
PBC OR NOT
