PBC Foundation
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PBC and work?

I am wondering how many of you who have pbc being controlled with urso to some extent still manage to work? I am a teacher and due to a flexible and supportive employer I am only at school 2 1/2 days a week now -but there is always work that needs to be done! It helps us financially of course for me to keep working but it is very hard to push through the fatigue some days. Today I didn't make it in due to exhaustion and the vertigo I can tend to get when the fatigue is bad. (I possibly have a cold or virus as well at the moment but I am finding it harder and harder to tell!)

I am interested to know how others manage?

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Hi ... I’ve been on urso now for 4 years I had to have 3 months off work initially but mostly I work full time as a retail manager which is a hard stressful job I find if I manage my diet and resttime I usually manage quite well although if I go through a stressful time in my life that’s when my fatigue creeps up I get terrible foggy ness then and mental exhaustion which leads to me physically crashing so I recently had to take another month off work to rest and realign myself but I think this is not too bad considering and am back at work now recharged. Basically just lead as healthy and balanced life as u can and hopefully a full work life is very doable ... good luck

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Thanks for your reply. Anything particular you find helpful with regard to managing your diet?

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It’s been a try and see really small portions regular times and a balance of carbs good fats and proteins plenty of veg not too much fruit as my supers spike .dont overeat as u will slump but make it a life change not a diet as such .and yes on high days and holidays I happily have alcohol and cake 😁 but not too much and followed by plenty of water .ive lost excess weight about 3 stone but have not deprived myself you have to enjoy life and for me I take coq10 cider vinegar and fish oil supplements too .

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Thanks tessiecat!

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I also take q10 and fish oil . Magnesium stearate also helps x

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Hi there

I was dx in 2012 worked for 4 years after dx but the last 2 years haven't gone to work tried part time, I'd be in work for 2 weeks then would have to take a few days off to rest so in the end just give up. I'm still employed by the same company who are very understanding. But things got so bad at home would have to go to bed as soon as got home from work. I don't respond to uso so I am currently on a clinical trial. You just need to decide what's best for you. It has taken a least 2 years for me to come to terms with not going to work, but I feel my health and family come first.

Hope this helps

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Thanks for sharing your story about this. I agree that health and family are extremely important!

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Hello I have been diagnosed for about 10years I was in my early 40s when first diagnosed and working full time it was awful I had no other life but with a young family had little choice.But I had a cleaner and a gardener.Over time I reduced my hours and then changed to an easier job I tried to get to 55 but aged 53 can't go on anymore and have given up work.I worry about the future but simply couldn't carry on.My advice would be to get help with everything outside of work like a cleaner etc.And if it's still impossible look into ill health retirement and see if it's possible.

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Thanks for replying and sharing. It's been really helpful hearing others similar stories.

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I understand about the itching. It’s a real bummer. It’s making me very irritable.

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I was diagnosed 4 years ago and I work full time, 40 hours a week. I have no choice but to work otherwise I wouldn't have health insurance. I live in the U.S and have to buy my Urso in Canada due to my insurance not covering it. It would cost me $500 a month for the Urso. I get a 90 day supply in Canada for $220. I cannot get disability or help with the medications either. I have even tried the drug manufacturers and they are no help. Sometimes such as today, I am really depressed about this illness and having to work 5 days a week and am extremely exhausted and itching by late afternoon. I just want this to end. This to me, is not living. I guess it wouldn't be so bad if I didn't itch daily for over 8 hours a day and the fact that I'm constantly exhausted. Sorry for venting and being negative but I am having a rough week with this illness.

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Sorry to hear that you're having a bad week. Thanks for sharing. Hang in there!

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I am so sorry you have such a demanding schedule, I can't imagine working a 40 hour weeks with the PCB fatigue. You are a real trooper. Hope things begin to look up for you,

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I dont have fatique and work fulltime i will be retiring from my job in two years time

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Hi, I haven't been able to work for over a year. I was diagnosed last November but had been quite sick with fatigue and pain on top of it since last March when I woke with a fever. I have fibromyalgia and osteoarthritis and both of those got way worse. There's no way I could hold a job. I'll feel better for a few days and think maybe I could work part-time, but then I have a few or more bad days. I applied for social security disability and am waiting to get their decision or request to see a doctor. I'm afraid I may lose my house and have to find homes for my two horses and donkey, but I just can't do it anymore. I try to list things on eBay to sell but can hardly get much of that done. It's very frustrating to say the least. I hope you can continue to work.

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Thanks for your reply JoanCR. Which part of the world are you in?

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I work part time half days so I can have a quick sleep before picking the kids up from school. I couldn’t manage a full day. I also walk a few miles a day and find I’m more tired if I don’t. Sugar makes me really tired so I avoid that and alcohol. I’ve also gone gluten and dairy free. Early days but feeling better. Itching seems to have stopped. I do go to bed early or one late night wipes me out for days.

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I seem to itch and feel worse if I have too much sugar and gluten , much better if I don’t

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So useful to have this discussion. I went to the GP in November last year due to severe fatigue and following blood tests, scans and multiple biopsy they believe it's PBC, however I am not presenting usually as I have large shadows on my liver. Am waiting to see a specialist at the Royal Free in London (anyone else there?) for a definite diagnosis as my case is apparently complicated.

I was trying to work fulltime but it was impossible, literally days when I would feel so exhausted. I now mostly off work, especially since surgery, going to the office once a week and try to work from home. Thankfully my employer is really understanding although not sure for how long. If I do exercise I have to really pace myself or else I am wiped out for days.

I do follow a healthy diet generally although enjoy carbs and cake:) Interested to hear about any specific foods to avoid and wonder if the extra chocolates around Easter impacted my energy levels.

Does anyone know why exhaustion is a feature of PBC?

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I am not sure if that's really known - like the cause!

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Yes I am at the Royal Free . My consultant is Professor Pinzani . I have also seen Mr Fusai who is a surgeon as I had to have my gall bladder removed , however my l f t s were still high. Professor Pinzani helped me. He is wonderful and very kind. You are in good hands at the Royal Free. Hope all goes well . Let me know . Miriam x

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Thank-you Miriam, very reassuring. I was referred to Dr Thorburn but know I may not see him personally. It's been a long journey full of uncertainty so hopefully that will come to an end soon.

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Hi I am under Dr Thorburn he is amazing in fact all of the doctors at Royal free are great, I’m also on a clinical trial so go there regularly,

I was only diagnosed last year,

Inbox me if you want to know anything else regarding Royal free

Roz x

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think we make antibodies against the energy making part of the cell... the mitochondria.. hence the exhaustion.. but might be wrong. x

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hi j... i worked as a dispensing optician... loved my job... but just was too unwell to carry on...

unfortunately I had to stop work.. but in the end there was no choice.

can you cut back more???

if you are going to have to stop you need to get signed off at doctors... or you will not get any benefits otherwise.... you may not want to claim... but we had to... as relied onmy wages.

good luck whatever you decide. xxx

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Thanks everyone. As I am 55 I am hoping to keep persevering with the part time teaching until my superrannuation is available (at around 58 I believe). The 'good days and bad days' seems consistent in this discussion. It's a shame we don't really know which to expect when!

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I was wondering whether there are other South Africans who also suffers of PBC.The itching is driven me crazy.Al the time on cortisone tablets and injections when I stop the rash and itching is back.

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Hi Morrison. I'm a self employed cleaner and used to clean 2 to 3 houses every day Monday to Friday. I was diagnosed with pbc a year gone October and I'm currently taking 2 ursso twice a day 500mg each. I was also diagnosed with osteopenia and have had pernicious anaemia for 30 years. I had a bone density scan to diagnose my osteopenia and was also told that I have a hairline crack in my spine. Eeee the joys of getting old ha ha !!. Anyway I have now cut my workload to one house per day as I was struggling with manic fatigue and back pain as well as other symptoms related to my diagnosis. I have a puppy and I take him for two walks a day civering 4 miles and I have 3 grandchildren whim I take to school on a morning and pick up when finished. Some days I just want to stay in bed but at the moment I am dragging myself up and cracking on with what has to be done, and I'm hoping I can continue with this for the forseeable!!. This dreadful pic isn't going to drag me down and I'm making the most of good days and chasing the bad days away!!. I'm 55 and I'm going to be here until I'm 105!!. Take care and I hope things get better for you 😊

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Thanks Lindymarie. I appreciate your positive-yet realistic approach! Where are you from?

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Hi Morrison. I'm from England. Sunderland Tyne and Wear. How about you ?

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Geelong,Victoria Australia

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I was diagnosed with PCB 14 years ago. Some days I feel fine and other days I'm overwhelmed with fatigue so I can't imagine working full time. I am an Ebay seller and I find that consumes enough of my time. It is challenging, but I can do it on my own time so I work around the periods when I don't feel energetic enough to do much of anything constructive. I am so glad I rarely have to get up early in the morning like I used to when I had an employer, a full time job and I had to commute. I admire those that are able to work full time still and wish them the best of luck.

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You mentioned how you appreciate not having to get up early in the morning for work. That is one of the hardest things for me also. I seem to need at least 10 hours sleep each night!

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Hi jmorrison i was diagnosed 24 years ago aged 28yrs . On my first consult with gastroenterologist he told me then that i may need to give up work , and he was right , i have all the symptoms of pbc so life was very debilitating . To me a good many years to accept the position i was in because of all my ailments but now i am much more accepting of my life with pbc . I claimed disability allowance years ago and for all you people in the uk they brought in the P.I.P. i had my interview and gladly have manage to still get the payments . I also suffer from disc-disc-degenerative disease so not sure if having just pbc will you get full P.IP a.payment but i'm sure you would certainly get some of it . So for those of you having to give up work apply for P.I.P

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I work 40 plus hours per week as a Director of Social Services. I have a high stress level job. I have Fibrosis stage 2 from PBC. I feel exhausted at times but I push myself and make it.

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I was diagnosed 14 years ago. I've always worked - full time at a fairly senior level / demanding job then 6 years ago became self employed. Currently run an interiors company + take on freelance work (+ managing a house build + 2 teenagers). Sometimes it's 15 hour days, sometimes it's 5 hour days. It's important to me to keep active, keep the brain active (I get the brain fog more and more these days) and not let the condition take over. However, some days I literally feel myself falling asleep while sat at my laptop.

I find having 2-3 really early nights a week (8:30pm) and a long nap on a weekend gets me back on track when I'm going through a fatigued phase. I also try to have some Fridays off to re-charge. I can see it would be tempting and very easy to slip into a less active routine, but feel it is important to push through (I see lots of people in much worse health than I am, achieving much more than I do, so I tell myself to get on with it). Unlike the lady above, I find doing the housework and gardening is a good way of getting exercise and keeps me fairly fit so I won't get someone in to do these (though I could do with an ironing lady as the joints are starting to ache in my hands... presuming that's arthritis creeping in, but not ready to face into that yet!)

Fatigue aside, have so many doctors, hospital, blood test appointments these days I often wonder how I'd have managed to juggle these within the workplace, and feel very fortunate that I work for myself.

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I’m 49. Coincidentally around the time of my diagnosis shifted from a very high stress job with extensive travel, to a more flexible consulting job. I feel lucky to be able to sleep a little more and exercise regularly and dial down my stress level a bit. And sneak in the occasional nap!

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Hi jmorrison

I live in Melbourne and was diagnosed at 38 ( 14 years ago) when the youngest of my 4 children was 5. Although my liver is cirrhotic ( progressed to stage 4 about 6 years ago) I still work as a nurse/case manager for one of our big health services - 3 days/ week.

Fatigue is my constant friend (!) but I keep on pushing forward. At 52, I'm reluctant to give in to PBC and hope to remain stable for many years to come.

Take care

Karaliz

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Hello, I have PBC/AIH overlap diagnosed approximately 6 months ago. I am on the usual meds and have been able to continue working full-time as an English teacher in a secondary school. I have had some irritating symptoms (itching etc.) but nothing to stop me working as yet. I have another 15 years before my official retirement age so I am hoping to carry on a little longer yet. As you can appreciate the workload is immense and the job is tiring anyway so I am not sure whether any fatigue is related to the condition or the job. Glad to hear your employer is supportive; mine has been too. I must confess that I am concerned about how supportive they will be if my health deteriorates. I just try not to worry too much about the future as the condition appears to have a slow rate of progression. Take care and I hope you soon feel a little better.

Jane

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Nice to hear from another teacher Jane. Where do you teach?

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I had to quite. I was a machine operator running lifting. Im trying social security. Im trusting Gos yes and amen.

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I work full time as a library media assistant at a school. I was diagnosed with stage 3 PBC and Autoimmune Hepatitis January of this year. It was not discovered earlier as I had no symptoms. I am the parent of a special needs child as well. I fortunately still have high energy and hope that continues. I am on Myfortic which is an autoimmune inhibitor and that makes it tricky working in a school of almost 1000 students and 150 staff. Always some type of sickness is going around. Colds, flu, chicken pox etc. I eat no processed foods, try to avoid salt and try to walk 6-7 miles a day between work and home. I wear a fitbit to keep track. I had an allergic reaction to Imuran that included a rash, body aches and large dark circles under my eyes. I thought I may have to quit work due to rash (I wasn't contagious but students and staff were looking at me oddly) but it cleared up in a few days time once off the medicine. Once diagnosed I went from an allergy pill a day to 14 pills a day! I have been able to decrease down to 10 pills a day. One is a chewable Vitamin D3. I try not to think of not being able to work and afford my health insurance. I try not to think of getting "the itch" and other things others have to deal with. My goal now is to finish the school year and have time over summer to focus on what else I can do to ensure I have a good quality of life for a long time. Praise to all who have it much worse. Your strength is inspiring. Thanks to all who share their journey and things that help. This website and people on it have helped me immensely!

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