Itching driving me crazy

[Elani1]

Hi I'm new here so not sure how this works 🤔I have been diagnosed with Pbc right after my pregnancy ( Baby now 9 moths) The itching is driving me crazy.. Is there anything I can do about it?? As I am taking ursofalfk 250 MG 3x a day.

[shaza1966]

Hi Elani1 , i was diagnosed with pbc as i was falling asleep a lot but when i was awake i itched like crazy . It started of on my head so i kept thinking i had nits but mum could never find any . When i first went on to urso the consultant put me on Colestyramine. After a while it stopped working so my liver doc put me on something else that again only worked short term now i on rifampicin and you can only get that prescribed by a hematologist . My legs have scars where i itched so much and bled . I used to put an ice pack on as that would calm it down a tiny bit give me some relief . The rifampicin has been a God send as i no longer itch . hope you get relief soon

take care

[Elani1 in reply to shaza1966]

Hi Shaza1966

Thank you so much for your response.. From were are you.. I am from South Africa.. I am at stage where I scratch myself until it bleeds.. I am desperate and would try anything now.. I'll definitely search for a hematologist maybe that is the answer to all the itching.. Keep well!!

[Rockie in reply to Elani1]

Hi Elani1. I am also from South Africa. Let me know where? I also suffer terribly from the itch. I cut gluten out from diet and all fatty foods, and still the itch remains. My liver counts are the best they have been in 8 years but somehow the itch is there to stay. The rifampicin I was also once prescribed but had bad reaction to it, tookit only twice. I was told that it is mainly used for people with TB. I am also on 3x 250mg Ursofalk,previously Ursotan. After 7 years of persuasion, the Medical Aid only recently agreed Ursofalk as PMB. What a relief as this PBC not a sickness for the poor

[Elani1 in reply to Rockie]

Hi Rockie

I am bases in Kempton Park.. I spoke to my Dr today and it seems like he wants to add my name to the waiting list for a new liver.. Yes for sure all this medicine is so expensive 😣

[Rockie in reply to Elani1]

I am based in Alberton. I am holding thumbs for you for a liver transplant. I am 77 so for me it would no longer be advisable as I still have some more autoimmune diseases.

[shaza1966 in reply to Elani1]

Hi Elani1 most definitely get a hematologist and sooner the better the rifampacin worked real faster than all the other meds i had but you have to bear in mind it's a antibiotic so maybe you want to try the other meds first . I know that it is not good to be on an antibiotic for long periods of time but i could not live with the itch thats for sure . It was so so bad stuck in a chair everyday with icepacks on and bleeding everyday was no life for me . I pray you get relief quickly . Let me know how you are getting on all the best .

[Evaibrahim60 in reply to shaza1966]

Good on you you have done something about the itch and pray that keep working for you

[shaza1966 in reply to Evaibrahim60]

hi Evaibrahim60 thank you i had to as i was heading to a dark place with it all . Now i'm just left with the joint and muscle pain and peeling skin. My hematologist told me i was one of the 10% of pbc sufferers to get all symptoms of pbc . My GP told me today that i might also be suffering fibromyalgia . Never rains but it pours ! I hope you are doing well .

[Evaibrahim60 in reply to shaza1966]

Thanks Shaza. I have suffered many autoimmune conditions starting with Asthma when I was 8 years old then I had I.T.P when I was 22 which required steroids for life or removing the spleen ( I have chosen the later). My husband tried to help someone just starting a career as insurance representative in 1993, the blood testes for that came horrible but refused to tell me what was wrong and refused insurance policy cover. My GP sent me for blood test and the result was that I got Very low hemoglopine counts, treated with iron and then he said to go back and try the insurance again but was turndown. My GP ordered more tested then sent me to haematologist which in turn run more extensive tested,the result was I have Haypothroidism, autoimmune stomach condition and autoimmune anemia. Also was diagnosed in 1997 with fybromylagia and in early 2000s with Autoimmune hepatitis. Last year romatuide arthritis. Under lots of medications and one of them is Ursofalk for the last 15 years and taking antihistamine to stop the itch but last two years nothing worked for that itch. Soon I’ll get my blood test after a trial stop Ursofalk and see where I go from here. Pray for everyone to get better and overcome the suffering. Sorry for being too long.just joined on the 23 of last month and never told the full story!!!

[shaza1966 in reply to Evaibrahim60]

hi Evaibrahim60, i'm so sorry to hear of all your conditions that you suffer , i do empathise with you. I just joined recently too . let me know how your trail goes . My diagnosis for pbc was back in 1998 and i was put on Ursodeoxycholic acid for about 17 yrs until it stopped working for me. Now i am on Ursofalk .

take care sending prayers

[Evaibrahim60 in reply to shaza1966]

Thanks and I will keep you informed

[donna01]

Elani- I'm sorry you itch like that but I have some night time itching and found Sarna cream really helps. Also, if you can drink celery juice with ginger root, it is fantastic for the blood and cleans the blood. It makes me go to the bathroom therefore getting the toxic crap out of our body. ( my belief)

sarna-skincare.com/products...

[Elani1 in reply to donna01]

Hi Donna01

Thank you so much for your response to my post.. I will definitely try the sarna cream and the celery with ginger root.. I am very deprate and will try anything.. Thanks for the advice.

[Hidden in reply to Elani1]

Do you know what your enzymes are

[Elani1 in reply to Hidden]

Hi Jennyhadenough I have no idea..

[donna01 in reply to Elani1]

oh, and add an apple if you wish to make it taste better

mindbodygreen.com/articles/...

[Elani1 in reply to donna01]

Thanks Donna will get some tomorrow morning first thing and try it. 😀

[Evaibrahim60 in reply to Elani1]

I would be worry about what I should use but for me for about 13 years out of 15 with Ursofalk, a tablet of an antihistamine worked aso I cannot use ginger since it does interfere with my other medications.if you not sure it’s better to discuss it with your doctor. My liver doctor refused to acknowledge any link between Ursofalk and itch as itvery confusing to know which is cause the itching isn’t our condition or our medications! If you didn’t go anywhere with doctors you can always search the internet then discuss what you think it’s with the doctors.

[Lucky4]

Hi Elani1,

I'd recommend with any natural products to research it for yourself. Here's some information about celery taken in medicinal amounts:

webmd.com/vitamins-suppleme...

I don't know if this applies to you but thought you should be aware.

Cheers

[shaza1966 in reply to Lucky4]

Hi Lucky 4 thanks so much for that so glad that i read this as i have low thyroid and it said celery can interact with it so i will avoid it ty .

[Lucky4 in reply to shaza1966]

You're welcome; good to read up about natural products/herbal remedies before taking them and discuss with pharmacist/doctor. Hope you find something that works for you.

[Elani1 in reply to Lucky4]

Thanks so much for the effort lucky4

[donna01 in reply to Lucky4]

You are referring to Medicinal amounts in pill form? I don't believe 2 or 3 pieces of celery in a blender with apple even compares or would hurt, but Elani, read the link I provided you yesterday and ask your Dr about it. The benefits of it cleansing the blood really works for me.

"Celery is a major alkaline food. This means it helps to purge the body of acid and toxins and cleanse the liver and bloodstream like nothing else."

mindbodygreen.com/articles/...

[Catherine3883]

I found that aqueous cream with 1% peppermint helped. I had to have it prescribed and lots of cool showers. I was diagnosed 6 years ago and taking URSO acid now. I just walked round ina t shirt inside out as I couldn’t cope with anything else touching my skin, especially labels and elastic. Still get itchy periods and exhaustion but the gaps are getting longer. I used ice packs in plastic bags to put on itchy areas as well. It is awful.

[Elani1 in reply to Catherine3883]

Catherine I feel your pain... It's awful 😩

[Anne29]

Hi Elani1,

I too had crazy itching for years on my hands face legs and gradually my torso was becoming affected.I tried everything not knowing until a year ago at diagnosis of PBC what caused it.Two years previously I had been diagnosed with depression and put on Sertraline at 50mgs daily.It will keep anxiety at bay leaves a clear head still. I didn't notice too much until later that the rash and itching and torn bleeding skin had gradually cleared. Because I don't need anti depressant medication these days , and have previously been anti-medication, I have attempted to wean off the setraline. Firstly , when doing so there will be a period of mild to stronger side affects as the brain readjusts. I am used to handling this as I know what to expect. The issue is that each time I do the itching returns. I watch my diet. Sertraline strangely enough is known to be effective for some with the PBC itch. I'm not advocating it but if you are in that much discomfort just wanted to post my own experience. If you are breastfeeding then I would think it may not be a good - I don't know ask your doctor. Another suggestion is find a really good reflexologist preferably someone with physio skills and good head massage skills. It can help specific organs function better. Other than that watch your fats sugar dairy and also grains (wheat, oats maybe), check out what you are asking your poor compromised liver to process! Find a way to stay calm if you can. Easier said than done I still remember.... I imagine having a new baby makes it all twice the struggle! I hope things improve for you soon and that this helps in some way, or other good advice here does. Take care, Anne29

[Sandymh]

Hi Elani.

I was diagnosed 2010. My symptoms were extreme itching, lethargy and tiredness. Lethargy and tiredness only hits me sonetimes now but nothing major. The itching drives me crazy and I'm never free from it. Sores all over me from continuous scratching, especially at night. Last night was horrendous as I couldnt sleep either. I am prescribed Urso, Colestyramine, Colesevelam, Phenergan antihistamine, and aqueous cream with menthol. Nothing works for me. A TPMT blood test shows that I am not suitable for Azathioprine, and I refuse to take any other drugs that could cause more possible damage to my liver and also kidneys. My Alk Phos was 1200 on diagnosis and has never gone below 425 which is only once since diagnosis. Mine is usually in the 600 to 700 range even rising to 966 in January 2015.

My consultant says these levels have no bearing on the level of my itch though.

I am now 71 and apart from this dreaded itch, I would be in good health.

I do hope you can find some relief from yours though xx

[Elani1 in reply to Sandymh]

Sandymh thanks for your time ON# writing back to me.. I am also ON# Phenergan and ursofalk.. Phoned my doctor today as I haven't slept at all last night. He will send me another script for something he thinks will work..Feeling hopeful 😊

[Sandymh]

Hi Elani. Phenergan usually works reasonably well to help me sleep but do have the odd nights like last night when I couldn't and thats when I itch more. I'll be interested to know what your Dr will prescribe for you xx

[Sandraatlakehouse]

Hello...I live in the US ..-what I’ve found to dramatically reduce my itching is glutathione Iv drips... I also take a digestible version of it in pill form when I can’t get the IV.

[Ottley3]

I was slightly itchy before November, when i went on Ocaliva. I now have bouts of extreme itchiness - but the ocaliva is working well on reducing my liver enzymes so i am just dealing with it. I also use the Sarna lotion and find that very helpful and i find that the itch is worse when i am fatigued and or dehydrated. I am just back from a 5 day business trip and was mad with itchiness - been home 2 days, rested hydrated and sarna and things are much better. My doctor prescribed a powder to help with the itch but it interacts with Urso and i frankly dont want to take any more medicine than i have to so i am trying to address the itch on my own - water, Sarna, meditation. HOpe my answer is helpful.