Itching

[gwillistexas]

This is trivial, but I’m curious how many do not have the dreaded itch and/or fatigue? 🤔

[4pjx__]

Well, I don't have the itch but I do have fatigue sometimes. Today being one of those days. Some days a little tired, some days not very tired and , so far, now and then really tired. How about you?

Pam

[gwillistexas in reply to 4pjx__]

No, I have neither so far. I only feel a little tired when thyroid is too high & im hypo. 😊

[cocotte5 in reply to gwillistexas]

Im hypo also since 1988 i take a plii every morning! having my thyroid checked at my physical ,im loosing lots of hair! i cant say iget tired,i do a lot and i have 6 indoor kitties im mostly bored since i retired and sort o depressed also ! im in Michigan and the winter lasts forever ive been sleeping a lot getting my blood checked soon

[gwillistexas in reply to cocotte5]

My thyroid is either hyper or hypo, never stays in balance. I keep mine checked often because it bounces around so much. I used to think just being hyper would cause hair loss but hypo can as well. Mine isn’t thick anymore. I take my pill every morning between 5:30 & 6:00. I do get sluggish when it’s hypo but otherwise I do okay energy wise. I don’t like winter so I’d probably not do well where you are. I love kitties. I have 2 indoor. Good company 😊

[donna01]

I have the itch almost daily. It started about a year ago. It is mainly from around 4pm until 2 or 3 am. Mine is usually all over my body. I cannot use blankets for very long as heat makes it worse I was diagnosed about 5 years ago.

[gwillistexas in reply to donna01]

Strange it comes at a certain time of the day isn’t it. I’ve heard others mention heat seems to aggravate it. Thanks😊

[donna01 in reply to gwillistexas]

It seems to be after I am awake for 8 to 10 hours. I don't know why either, but definitely worse at night. I rarely sleep anymore and have recently started cholestyramine but it is not helping yet. It gives me horrible stomach aches and then wakes me up once I am asleep. I can't win....

[gwillistexas in reply to donna01]

That must be hard on you. I’m a bear without my sleep. I hope you will soon have some relief & be able to rest. Prayers for you🙏🏻😊

[donna01 in reply to gwillistexas]

Thank you very much. Trust me, I too am a bear. I am now on intermittent leave from work because once the itching starts, I can't work any longer either. I am praying they find a cure to this curse!

[cocotte5 in reply to donna01]

hi ! i did not itch for almost 15 years until my med Urso Forte changed to Ursodiol and that the time when the itch started and my ALP went up to265! seing my gastro in december I have to try to get my original Urso from Canada! my insurance does not cover it anymore it would cost me $800 for 3 months!

[donna01 in reply to cocotte5]

Hi Cocotte5,

The itch is maddening, isn't it? I would do ANYTHING to get it to stop! It is nightly and lasts for hours. I am not sure if ALP has anything to do with the itch or not. Does it? Anyways, I too buy my medicine from Canada. It is called Ursocol 300. They come in tablets. My insurance will not cover it either. Well they will, but its over $3000 dollars. I pay I believe $285 for a 6 months supply from Canada! It blows my mind how expensive it is here in the U.S. in 2017, it was only $30 a month. Anyways, good luck to you. I hope you get some itch relief and pray for all of us with this illness

[cocotte5 in reply to donna01]

hi! thanks for the info ! I dont know where to start with my Urso from Canada ! do i need a script from my doc?i hope i can get back to Urso Forte I had no problems with it ! Im itching tonite! its crazy ,yesterday i was ok, im not sure about theALP have to do with it,all I know is that with my other Urso i did not itch for 14 years and my ALP were normal! what State are u in ? i will pray for us to be ok for a long time

[donna01 in reply to cocotte5]

I too am itching tonight. Just took some cbd oil. Anyways, I use northdrugstore.com and yes, you must upload a prescription. I am in Illinois how about you?

[cocotte5 in reply to donna01]

hello! thanks for the info! woke up and im i tchy ! im not far from u Michigan! 60 miles north of Detroit! are u on Fb? have a good nite

[gwillistexas in reply to cocotte5]

cocotte5...asking me?

[donna01 in reply to cocotte5]

I am in far west suburbs of Illinois, about 45 minutes from Wisconsin border. Yes I am on fb. How much urso are you on and how many times per day?

[cocotte5 in reply to donna01]

hi ! so North of Chicago going toward Wisconsin! nice area! i take 2 500mg of Urso since 2002 i was ok till they changed my med urso forte for ursodiol [generic] since that[ about 1year been itching and my ALP are up a little !

[ninjagirlwebb]

I was itchy on my arms & legs in the summer when it was really hot. Not sure if it is pbc related. I just think I am extremely sensitive to excessive heat & humidity.

I am usually a bit tired but it probably isn’t the fatigue that others have talked about here. When you work long hours at a stressful job, you are physically & emotionally drained. So not sure if that is pbc related or just plain hectic lifestyle stuff.

Additionally my thyroid has been acting up. It was hyper & now it is hypo.

[cocotte5 in reply to ninjagirlwebb]

im glad i finally retire 4 months ago! i was under a lot of stress but i cant say iwas tired now im bored and sleeping a lot... the grey and cold weather does not help

[ninjagirlwebb in reply to cocotte5]

Sometimes I wonder... what is best...being super busy or so relaxed until you are so bored that you are tired!!!

[cocotte5 in reply to ninjagirlwebb]

that is so true!like today, grey,cold.and very windy! im just very bored

[gwillistexas in reply to cocotte5]

I understand. I don’t deal with cold dreary days either. Depressing. I need sunshine.

[Ktltel]

Hello,

I don't have any itching. And my fatigue comes and goes. Somedays I can go most of the day... like today. Other days I'm in bed all day doing nothing cause I just don't feel like doing anything. I gotta push myself to get stuff done. Most everyday though I'm up and out of the house till around 1:00pm. Once I get home if I sit down..... I'm a ROCK. 🙁 I'm 59.

Stella❤

[cocotte5 in reply to Ktltel]

hi ! thats me! my fatiguecomes and goes! its something new! i dont have a routine anymore and the Michigan weather is around the corner.. depressing

[Ellyne]

I do not have itching or fatigue. I am retired so I wake up on my time and and do not rush around getting ready for the day. I do go to a trainer twice a week and take classes at a local gym. I am tired at night but I wouldn’t call it fatigued. Just time to go to sleep.

[cocotte5 in reply to Ellyne]

it sounds like a good plan u follow! i retired 4 months ago myself,i was afraid i would get bored ,but actually im getting to like it! i dont have to rush in the morning,i get up whenever.. im not tired but since they changed my med Urso ive been itching quite a bit and waking up at nite! but the itch stops around 5am and i can rest.. im pretty active during the day.. i need to get back to the gym soon.

[Oidra]

I have never had itching (everything crossed at this point). I have had occasional fatigue but it was mainly when I was not well so I do know that feeling when you just have to sit down and most probably go to sleep as your body says it cant do anymore. It is not like the tiredness you get after a busy day.

[Ottley3]

I was not itchy until i started Ocaliva. It is unpleasant but manageable - it comes and it goes - sometimes i go for weeks without being itchy - i use Sarna lotion to manage it. I will say that the itch and the fatigue really started to flare on me this summer and when i got my blood tests back my numbers had reversed course and started climbing. It was probably due to interaction with another drug that i was actually feeling symptoms. It seems I am likely a non responder to Ocaliva, more on that later.

[gwillistexas in reply to Ottley3]

Ottley3...I’ve not itched with Ocalvia but I’m wondering if I might be a nonresponder. I only base that on my last fibroscan which showed little increase in fibrosis. So since I’m only on Ocaliva, my GI wanted me to see a hep in hopes he might try something different. Still waiting for that appt. 😊. I hope neither of us are nonresponders. 🤞🏻Not much choice out there for drugs at the moment.

[cocotte5 in reply to gwillistexas]

ihad my 1st fibro scan in sept it was ok i guess F2 with some fibrosis but since ive been on generic Urso my AP have gone up a little and the itch started.. but in general im ok

[cocotte5 in reply to Ottley3]

my gastro does not want me to take Ocalvia im on Urso

[Hidden]

No itching, but intermittent fatigue if I don’t pace myself it can last for days. ( when I was working it was constant but since retiring it comes and goes thankfully)

[nunbrook]

Hi I don't have itch or fatigue, in fact no symptoms at all apart from slight pain in the right side near my ribs. I feel very lucky and hope it stays that way!

[mtrafter]

I have fortunately never had the dreaded itch (fingers x'd) or the overwhelming fatigue, I do get tired but being retired now I can pace myself,I have had PBC for 11yrs.

[HealthyChik]

No itching for me. I work a stressful job with long hours sometimes and on those days I'm exhausted but I don't think that is from PBC. But I have noticed that I used to be able to stay up late (12 or 1 a.m.)and work or do stuff around the house. I'm a classic night owl, but I can't do that anymore and try to get in bed by 10:30 or 11. I just attribute that to getting older. I'm in my early 50s and haven't gone through menopause so there is all kinds of craziness going on. I am about to slow down and work part time. I think the stress we put on ourselves makes the condition worse. I do manage to fit exercise in several times a week which is a big stress reliever for me. I'm keeping my fingers crossed that the itch never comes🤞🏼

[SandraS]

Unfortunately i have both! Diagnosed 2015, then diagnosed with AIH in January and placed on steroids. All was fine until Drs decided to take me off the steroids in july and since then i have had the itch and fatigue that comes and goes. Now on questran light which has helped the itch.

[kishna]

No itching or fatigue for me. I am 44 and have been diagnosed with PBC for almost 5 years.

[liver-bird]

I don't really itch much just occasionally and I can divert my attention to something else. I do suffer fatigue but not too bad

[Sachin1234]

I itch during night but it won’t wake me after I fall sleep.. fatigue everyday as well so far manageable

[CathyPBC]

According to our PBC physician experts, approximately 35% of PBC patients suffer from moderate to severe itching and upwards of 50% from fatigue.

[gwillistexas in reply to CathyPBC]

Yes, I was just curious how many aren’t bothered with it. 😊

[Hils67]

Hi, I was diagnosed December 2015 and immediately put on URSO. When I first went on URSO I did develop a mild itch. Over the last 3 years I’ve suffered with it intermittently. I was getting very stressed at work...unsympathetic boss!! When stressed the itch was awful at night, often I had to get up in the night for an hour or two until it calmed down. I went onto a herbal tincture from my herbalist and that helped the itch loads...only got it when I was really stressed or over tired. I stopped the tincture some months ago, and my itch seems to have returned...even though I’m not stressed at work, as I have a new boss (much better).

Anyway, after my last bloods showing the LFTs are rising again I’m going back on the herbs, hopefully they’ll help with the results and itch. I’m 50 and currently going through the menopause. The hot flushes do seem to aggrevate the itch, so hopefully the herbal tincture will help with the flushes too.

I don’t really suffer fatigue, it I get more tired than I used to...so I just pace myself more now.

Hopefully you’ll be lucky and not have the itch!!

Best wishes and stay well xx

[gwillistexas in reply to Hils67]

Thank you. Yes I’m hoping it passes by me. I remember hot flashes. I’m 64 & haven’t had them in years, even without hrt. I remember sticking my head in the freezer many times, lol! Spicy food would set it off also. No fun😊

[Debrann62]

I had bad itching when I started both meds. I started taking my meds at bedtime now no more itching. Not sure when you take your but try at bedtime, hope you get relief soon.

[VeeWat]

Does the disease cause the itch or the urso?

[gwillistexas in reply to VeeWat]

I’ve never itched except when I tried Urso. But even then it was sporadic & went away within minutes. I take Ocaliva & no itch. I think some have said they itched even before diagnosis.

[FranSP]

Would like to know how PBCers deal with the persistent itching. Does anything help?

My hep Dr. Rx’d Cholestyramine once a day, 4 hours after morning meds. So far, no relief. I’d welcome any suggestions

[Sun65]

Right now I do not have either. But I have noticed I get the itch when I eat shell fish and take certain supplements.

[gwillistexas in reply to Sun65]

Maybe you had developed a slight allergy to those things. I saw my hep yesterday and he always asks if I’m having any itching. He seems a little surprised that I don’t. But, that’s not to say I won’t some day.