Has anyone achieved any improvement in any of their symptoms by anything they've done/tried?

[cazz22]

Just wondering if anyone has had any relief from itching/fatigue.aching etc from anything other than pain relief urso etc.i apprieciate everyone is different but thought anything is worth a try

[spoul]

The fatigue is very overwhelming and after 16 yrs since diagnosis I know the fatigue has worsened. I cut down my hours at work but then had to retire at age 51. I thought my fatigue would improve after finishing work but I still sleep for an hour every afternoon. On a positive note this gets me thro the rest of the day. Sorry don't mean to sound negative and like you say everyone is different. The urso stopped me itching!

Take care and most important don't fight the fatigue for sure that doesn't work!

[Hidden in reply to spoul]

Hiya spoul.

Can I ask you when the urso actually stopped the itch for you? I know for majority of PBC patients taking urso the itch doesn't vanish but it does in some and the reason I ask is that I know you've had PBC quite some time now to mine and am hoping that you might now tell me you were on urso for a few years before the itch vanished.

[spoul in reply to Hidden]

Hi peridot, yes it went straightaway ......and my itching was pretty intense before, to the extent that I bruised my legs thro scratching. Must say it was a huge relief....I take 1250mgs daily x

[Hidden in reply to spoul]

Thanks for the reply. Had hoped you'd say otherwise but I am pleased that someone has made a certain progress with the itch due to urso (it just helps my LFTs).

The only other thing I can now think is that I am experiencing a side-effect of the urso which is pruritis (aka the itch!) and due to it the itch for me isn't being cancelled out.

[gaby1011 in reply to Hidden]

Hi Peridot,

I think you and I are in the same boat. My "itching" has also gotten worse while on the urso. I've been taking it for about 5 weeks now.I was told there might be an adjustment time frame but also had cholestramine 2X a day added to my treatment last week to work with the urso.It causes constipation. I got to trade that for the diarrhea. Yeah!

I have been taking hydroxyzine for itching for the past 6 mos. I shudder to think about what this god awful itching would be like if it were not for the hydroxyzine. Before starting on it I was overusing antihistamines to calm my skin.

I also need to take an ambien at night in order to finally be able to sleep. Most nights I sleep with bags of frozen peas on my arm to "freeze" the burning sensation.

At this point I can say that I'm not feeling very hopeful that any of this is going to give me relief. As I said, I actually feel worse.

I will do or take anything to be rid of this burning and literally bloody itch!!

I am currently researching cannibus salve. I never thought I would say or do that. I am so against drugs and did not agree with legalization of cannibus here in WA. I understand that there are some medical uses for it but the thought of me using in any form is hard. It is suppose to be wonderful for skin conditions and pain. I'm a bit skeptical about something topical working as I have tried them all - prescribed and over the counter. I have a cabinet full of products that were very expensive and didn't work...

All for now - Gaby

[Hidden in reply to gaby1011]

Hello Gaby.

As I say only someone who has experienced this itch as a lot of us do on this site have or still do, it does have an impact on day-to-day living. I could say that for me I'm notso bad during the day, get the odd prickles if sit for too long but nothing like I get it later at night.

Just had 2 nights of very restless sleep and feel tired at the moment. I am now hoping tonight brings me sleep as I find that if I can get an adequate nights sleep then I have basically slept through the hours of the itch.

Although I wouldn't do normally, I tend to find getting out of bed if I wake and popping to the loo does give me a bit of temporary relief. In that time with moving about the itch has left me but within 10mins of getting back in bed if I don't drop off to sleep it starts up again.

One idea that I have been wondering about is quinine. I know it is in minute quantity in Tonic Water (or Indian Tonic Water as it is also known) and it can help relieve anyone who finds they get cramps in bed at night. I know quinine is very expensive and can be administered as medication. I can't help wondering myself if something like this would perhaps alleviate the itch.

Unlike yourself I have been holding off asking the doctor for something as I'd not consider my itch to the extreme but never know what passing time can do regarding this.

I am convinced the urso causes the itch but at the same time improving LFTs does cause the itch to cease, a case of either way a no win situation if unfortunate like us to continue to itch whilst on urso.

[cazz22 in reply to Hidden]

Hi Peridot sorry to hear you are struggling with the itch.reading your last comment just wondered if you have tried coming off urso for a couple of weeks to see if it is the medication?i must admit I don't take mine regularly.my bloods were only slightly raised and the meagre dose (450mg) I'm on have brought them to near normal however only feel good when I'm not taking them .they do stop any odd prickle I've had tho

[Hidden in reply to cazz22]

Hello cazz22.

I have thought about stopping the urso temporarily to see but I then thought if I was itching much much worse duriing 2010 prior to starting urso then would it return like that. It has improved over time but not as much as I was originally hoping it would.

I take 600mgs per day of urso. I have read on the Bear Facts that it is recommended 13-15mgs per day but my hospital doctor prescribed me with 10mgs per kg body weight back in Dec 2010. I am not the 60kgs that my weight was rounded up to (I'm around 55) and know that when I have thought previously I might be on too little and decided to take an extra 150mgs daily - since Sept 2013 I receive 150mg tablets due to a 300mg recall July 2013 - I have to say that there was no difference in the week I did this.

Apparently with PBC you can't exactly overdose on urso by accident as any excess urso that is no required simply excretes the body in faeces. I noticed in the week I took an extra 150mgs per day that it did have an impact on faeces so I think 600mgs for me is about right. I have never suffered from diarrhoea due to taking urso like a lot on here do.

[Anne123_45 in reply to spoul]

My itch left pretty much right away too.. It returns once in a blue moon..

[mandilou]

I'm curious also, I'm still waiting for liver biopsy results but I still itch on the urso which I'm sure is from certain food ( possibly vegetable oil..I look so disgusting from scratching, and ache across liver area, is this where u ache? I do find the bicarb soda bath soothes me itching but just can't always be bothered getting in the bath around 3 kids and the cooler weather

[Hidden in reply to mandilou]

Unfortunately one of the side-effects you can have whilst taking is pruritis which is the itch so in my mind we might be suffering from the side-effects of urso that cause the itch so that is why we don't get rid of it!

I have tried Bicarb in the bath too but only got a few hours relief at night.

I know there is all the research going on for certain meds for PBC (OCA is one that has been in the news recently) but I still think the way forward with PBC is to somehow find a way to halt our body producing the antibodies that are causing the problems.

[Hidden]

Hello cazz22.

I started itching early 2010 and though I didn't think anything of it due to long hours at work at the time, I was quite fatigued. I was diagnosed with PBC Dec 2010 and started urso then.

The fatigue vanished quite some time ago (probably 2yrs ago now) but I do get tired at times later in the day if I had a restless night due to the itch. I tend to itch from around 9p.m. onwards and it hasa usually vanished by 5a.m.

In the early days of taking urso the itch was a lot more prominent. It has changed pattern over the course of taking urso for almost three and half years now as tends to be confined to night time. I can get the odd twinge of the prickles during the day if I sit about for a period of time but it doesn't tend to be a problem like it can become in the evening.

The itch does come from within so in my opinion anything used on the outside can only give an effect of relief temporarily. I've tried using Epsom Salts in the bath which are ok for a few hours but it can tend to make the skin quite dry. I've actually tried honey and vinegar in the bath too, that has been ok but doesn't give the relief much. Dead Sea Salts are another but they tend to dry the skin and don't help either.

It's thought that used bile travelling through the system is the problem that causes the itch. In my theory the bile salts as they have been referred struggle to be processed with PBC and as they travel via the bloodstream they leech out and I am certain the itch and prickles are coming from the reaction with the tiny nerve endings. It does figure given the itch can appear all over the body at different times. It's not something that tends to be confined to one body spot I find though I do feel it more in my legs from my knees to my toes more at night. My arms up to my elbow sometimes in the day feels itchy if I have a cardigan or jacket on and start to feel hot.

[xxx24]

Hi cazz22 I have been fatigued for a long time and was told that I was depressed when I would mention it. I would say that I loved my life and that if anything was depressing it was that I was sleeping it away. I would wake up refreshed but by noon would need to come home from work and nap back to work and at 3pm nap again to pull myself through to the evening. I slept well at night. My doctor wanted me on antidepressants which I refused. I finally changed doctors in November. He put me on Alertec which is the name brand for Modafinil. I have read posts where people talk about feeling revved up from it but for me it just makes me feel normal. I have no side effects from it and would be a spokes person for this stuff. It gave me my life back.I now take the occasional nap which I think is normal. But I am living my life normally again for the first time in 6 years. I encourage anyone suffering from fatigue to try it if you have tried diet, exercise, rest, meditation and nothing works you can always go off it if it doesn't work for you. Good luck with your journey.

[cazz22]

Thanks for that xxx24.at moment probably the only symptom I have is aching feet and legs but gather other conditions may follow soon.although I apprieciate not everyone is the same and what suits one doesn't suit another I thought it might be interesting to ask fellow pbcers.maybe someone has had good results from diet?tumeric?i will definitely be writing down mods finial.not heard of that before and we worth knowing.take good care of yourself and thanks again

[Lockness]

Hi cazz22 for me seeking advice from a dietitian, and sticking to the diet suggested, has had a significant affect on my symptoms. I still get some fatigue, but not nearly as much as I use to. I was also lucky enough to be able to take early retirement, I've just turned 53, from a really stressful job, and to work very part time, which has also had a big impact on my life in general. I must add that I do have other conditions that my diet has also improved i.e. reflux

[Hidden in reply to Lockness]

Hello Lockness.

Yes I do think that eating healthily can make one feel much better. I myself was fatigued back in 2010 when I was diagnosed with PBC. For me it has been probably a couple years now since I did have fatigue (being tired due to not much sleep through the itch is different as having fatigue originally I know how that was), I do think that an even more improved diet on to me what was already a good one has been significantly helpful.

I do think though the itch is a bit harder to tackle as for me mine did change awhile after taking urso but hasn't completely vanished.

For me as long as I can keep my system in a pretty good shape then that will have to suffice for now as I cannot rid myself of having PBC.

[cazz22]

Cheers Lockness I wondered what impact diet would have.i eat a good varied diet but wondered about being a little more selective ie removing gluten/juicing etc.wonder if anyone else has any suggestions .

[Hidden in reply to cazz22]

It is said that altering the diet or improving on an already good one with PBC doesn't really change overly-much. All I think you'd do is remain healthier but certain things regarding the condition would not really improve.

I eat gluten-free foods more these days but still have products containing wheat. I used to have a juicer until it broke last year, had had one for 10yrs. Can't say using that in those years stopped me getting PBC though. I might have thought I was really healthy up until 2010 when the itch started not having been to the GP for anything medication-wise since 1999 when I had a short course of antibiotics for a bad bout of tonsillitis of which then I had to use something else after as I got thrush from using antibiotics!

I know myself from the start of the itch (diagnosed with PBC Dec 2010), I did go through periods where I felt down in the early days and sometimes I felt I couldn't eat so skipped a day so no urso. I found that on those odd few days that the itch vanished. Now to me that states that if you are not eating then there is no bile being released for food digestion so no used bile to travel back via the bloodstream hours later hence no itch temporarily. I've not had a day free of eating now in about 18mths and last time I did notice I was itch-free for a couple days following.

So unfortunately it seems that whatever we eat will still keep the itch with us as part of the digestive process.

A lady once said on here that if it meant that we itch to rid our bodies of what are then toxins (used bile) then she'd plod along.

[June9961]

Hi Caz, Just had my hospital visit a week ago. LFTs not so good. They are sending me to Rheumatology for the joint pains which were getting uncontrollable. I was also given new painkillers. They tell me exercise is good for the pain but doesnt always work for me. As for the severe fatigue they can do nothing for me. On a lighter note I am in Cancun just now and have never felt so good. Not sure if its the pills or the drier weather. I am from Scotland where the damp weather can play havoc with the joints lol.

[gaby1011 in reply to June9961]

June & Caz,

I believe that my high iron levels is what causes my joint pain. Excessive iron deposits itself in the joints where it causes pain.I have read that this can also be a result of liver problems.

The treatment for this is to have therapeutic phlebotomies to lower the iron level. I have had 2 treatments. It's just like donating blood so it's no big deal. I will have 2 more and then have the levels checked again to see if they went down. I am already having less joint pain.

Have you had your iron levels checked?

Gaby

[cazz22 in reply to gaby1011]

Hi Gaby last time my iron was checked it was normal or whatever that means.il ask more details next time.thanks for info

[cazz22]

Hello June .so sorry to hear of your pain.its my only real symptom tho not sure if it's a post menapause problem either.my consultant doesn't seem to think it's linked to pbc(feel like printing out everyone's post sometimes

[cazz22]

In view of June 9961s reply has anyone experienced better health from increasing their exercise?im a walker and live to walk my dogs.its my stress relief.my only dog now is coming up13 and it devastates me to think I may become too fatigued to exercise any future pups.my husband keeps telling me it will be a focus on bad days to get out of bed and walk.i dread that I may one day feel like that and sympathise greatly with those already battling that.does exercise help?anyone?

[Hidden]

Hi Caz. For the last few months I 've had what feels like bone pain and stiffness that is worse at night in bed or if i sit too long, thinking this was yet another symptom of pbc I mentioned it to my gastro in february, who said it was not due to pbc, but then she also says my fatigue is not related either. But she referred me to a rheumatologist. I saw them in March and he diagnosed fibromyalgia. I also had a very low vit d count which he said may be making the symptoms worse. Light exercise is reccomeded for fibro and the vit d has helped maybe your consultant could refer you if he doesn't think it's pbc. Just to say I was dx nearly 5 years ago at 55 and still work full time in a job that that requires me to walk and be on my feet most part of the day but luckily I do have some admin work to do, which I leave for the afternoon. Thats when I am ready for the sit down. So maybe the walking is doing some good.

[cazz22]

Thanks Candy.now THAT is interesting.i be thought I've had fibro since I was 37 (55 now).seen countless specialists who then dismissed fibromyalgia as being a made up disease so I chugged along with it.i also work full time.i teach and wondered if standing for so long made my feet and legs worse.bizarrely my fingers and arms have been at it this weekend.ive always told myself it's my fibro kicking in(I usually get symptoms when I'm under stress eg colds or bad situations.)mm something to think about when I see specialist next. Cheers

[Axl888]

Too many carbs and sugar can make me fatigued. I try to exercise everyday I walk one day and run the next. It gives me more energy but I appreciate it doesn't work for everyone and I know that those who do suffer are in a vicious circle. Too much chocolate can make me itch but otherwise I don't experience the itch.

[Brummi]

Hi cazz22, I have been through a lot since being first diagnosed with PBC in January 2011. For my fatigue I was told of some over the counter sweets that give you energy, also a glass of two of Lucozade. The sweets are called Dextrose but another brand I'd a licensee same name as the drink. They give you energy, but I was told to avoid the so called energy drinks , but that applied to me . When I get tired I just find a place and just sit down and rest Take care

[JennerLayne]

I often crave sweeets and the instamatic 'energy boost' that comes from them, but in the end, I seem to 'crash' minutes or hours later and get right back into the slow lane. Both my Rheumy and Gastro cautioned too many sweets for a variety or reasons; the Rheumy says sugars can promote inflammation (my SED rate runs high) and my Gastro suggested I continue losing weight so I don't tax my liver with digestion/metabolism. It's all so complicated, isn't it?

[Rebekahw74]

I was recently diagnosed stage 1. I had PBC unknowingly for years. It was recently, right before diagnosis, that the symptoms appeared (itching and extreme sleepiness). Fatigue I have dealt with on and off for over a decade. I was somewhat fit already and ate decent but started eating cleaner last year because I just didnt feel well. When I got the diagnosis I completely cut out alcohol, gluten and started exercising more and eating more fruits and veggies.

I don’t know if it’s just coincidence or what has changed but the itching has vanished and my fatigue and extreme sleepiness are only when I didn’t get a good night sleep.

I was prescribed Ursodiol but I haven’t started taking it yet.

I am praying something I did made that happen because I don’t want it to come back!

[evesmith1963]

Rifampin works the best for my itching. I reccomend it!