I feel my PBC is getting worse and no one is listening

[Hils67]

hi everyone,

I haven’t posted in a while as things haven’t been too bad regarding my PBC and I was getting on with life, but these last 6 months have been awful.

In the summer my LFTs spiked ALP was 236, itching through the roof, fatigue terrible, mood swings, feeling really low. The spike was caused by stress due to looking after my 87 year old dad who was (what we thought at the time) dying. He wasn’t and now is much better health wise. But it’s taking me forever to recover. I had 6 weeks off work and was starting to feel better…whilst off work I started doing more exercise, eating healthier and having some me time doing my hobbies of gardening and soap making and cooking. So I went back to work…within a few short weeks I was off work again feeling exhausted. My body just doesn’t do well sitting at a computer everyday. But I have to work to pay the bills. I’m lucky I can work from home and my manager is very supportive but the work still needs to be done. I’m finding it really difficult to do my job. I’m a civil servant, middle management so have to do strategic thinking, manage staff and lots of tight deadlines. And I’m really struggling. My brain isn’t functioning properly. My motivation is rock bottom as I know I’m doing a crap job so I’m not enjoying it.

I’m menopausal and have recently gone onto HRT patches but oestrogen is still low so have gel supplement but still my mood is still low. Flushes have gone though so that’s a bonus.

I’ve started questran for the itch but only every other day at he moment because it makes me feel a bit nauseated. I’m taking anthystamines at night to help me sleep but often only getting 5 or 6 hours and feeling as though my batteries are flat all day. Which means come the evening I’ve no energy or motivation to exercise or do my hobbies.

It’s so difficult getting to see the same doctor…and I’m not due to see my consultant until June next year (no appt at all this last year)…I hate going to the dr as I often end up with ones who don’t understand. There’s only one good one in our practice and it’s pot luck who you get. My 4th phased hours fit note runs out in 2 days…and I feel I’m playing the system to request another one…but I’m really not well enough to work, but I’m not sure I will ever be again 😞.

I’ve got an occupational health appointment next week as I’ve had so much time off and just not sure what I want work to do. If they offered early retirement I’d jump at the chance but I’m sure they won’t as they’ll want to ‘put in measures’ first. I’d like to go down to 2 or 3 days but just can’t afford the pay cut. I’m due to retire in 5 years (early retirement at 60) and I keep telling myself to just hang in there for another 5 years…but oh it seems such a long time and I fear my PBC is progressing. What’s the point of retirement if you’re too poorly to enjoy it?

So, I’m just feeling a bit sorry for myself, I miss the old happy go lucky, silly, goofy, childish me…and I don’t like this miserable, snappy depressed version of me at all.

Sorry for the rant, but I just needed to let off steam to those who understand. I don’t like burdening my partner as I know he can see what’s happening to me and he’s worried about me already and I’m so lucky he’s so understanding.

Hope others are having a better day!

love Hils xx

[Chris21]

Menopause is not nice and I’m glad that it’s being discussed more out in the open these days. You are not alone with how you’re feeling and I think you should perhaps go back to the GP to see if anything else will help. Have you tried having a massage or something similar? It might help relax you. occupational health are pretty good with helping what suits your needs at work. Not much good with any advice but letting you know, I’m listening. Be kind to yourself 🙂💐

[Hils67 in reply to Chris21]

thanks Chris, actually I do have a massage voucher I need to use, my son gave me as a birthday present.

I’m going to ring the gp tomorrow and see if I can get to see the doctor who I respect…it’s pot luck at our surgery.

Thank you for listening to my rant 😊

Xx

[Hils67 in reply to Hils67]

Monday even 🙈

[Chris21 in reply to Hils67]

😂 brain freeze 😜I get it all the time 😄

[butterflyEi]

Hi @Hils67,

pre diagnosis I itched. then after being diagnosed and being put on URSO life normalised and the itch reduced. Then back in 2011 my mother came to live with me for the last 3 years of her life. I nursed her through her last days and after her death there were family issues which caused me a great deal of stress. With that stress came the return of the itch. It took me ages to get an appointment with the hepatologist and eventually paid privately to see him. Once he knew I was not insured he took me on to his list at the local NHS hospital. He started me on questran which I eventually took with my porridge breakfast, the texture was easier to hide in amongst the banana and nuts. The second sachet after breakfast was mixed into kefir or a yoghurt. This treatment did not fully work for me so first I was given Naltrexone which made me aggressive and this was changed to Rifampicin. I was still have problems so Sertraline was added. Although Sertraline is an anti depressant it also helps the itch so for me it had 2 beneficial impacts, helping the itch and helping me with my emotions. Fast forward a few years - During the era of the pandemic I was caught abroad and certain medications were difficult to get. Longer story short I currently take just one Rifampicin (used to be 2) a day 300mg, Sertraline at 25mg although I can take the full dose if needed (which I do when a stressful situation occurs), I take 2 X 300mg Gabapentin and recently S-Adenosyl-L-methionine (SaME is an amino acid). On the vitamin front I take a multi vitamin for the over 50s which is full of good gut bacteria, a vitamin D+K spray. For me it has been a long road of trial and error to get the balance I have now. The reason for all the above is to say that there are medications to help with the itch but it can be a while finding the right balance. As a thought an alternative to Questran (powders) there is a medication called Colesevelam or Cholestagel same thing different names. PBC people may and I say may become deficient in vitamins A D E & K so it is not uncommon for specialists to suggest a good multi vitamin.

There is a trial for a new drug which helps to control the itch. I think it may be called Glimmer. Perhaps your specialist could let you know about it or contact the PBC Foundation as they may have more information about it.

Please never worry about the need to share, auto immune diseases come with many burdens which are easier to bear when we can share.

Did you know that the PBC Foundation have Q&A sessions with specialists and Self Management session usually on Thursdays although as we come to the end of the year I don't know what their schedule will be. Most of these previous sessions can be found through YouTube on the PBC Foundation channel or scroll through their Facebook page.

I hope something in the above is helpful to you, come back and let us know how you get on.

best wishes

[Hils67 in reply to butterflyEi]

thank you for your suggestions. I don’t actually find questran unpleasant…it’s a bit gritty, but fine in apple juice. I’m trying to ease it in gently so hopefully I’ll get used to it. My consultant advised my doctor that we could try something else if I found no improvement on the itch once I’d taken Questran for a few months at 4 sachets a day! So I’m persevering with it for now.

Thank you for your useful suggestions xx

[gillrich in reply to Hils67]

Glimmer trial good I'm o 33rd phase but there is another one on phase 2 so contact the pbc foundation xc

[Mcd04]

hi Hils67

Your story sounds so similar to mine. I tried to continue to work for few years before realising that I had to give up. On good days ,you feel able to work and others is a definite no but nothing is consistent.

Although PBC is not on its own a reason for PIP ,some people suffer more than others with it and the symptoms can qualify you for it. Maybe consider applying for it and reducing your amount of hours /days working.

I gave up work totally this year and have accepted that I have tried everything to continue. This was hard to accept as I have worked all my days and held some embarrassment about not. My husband supported my choice,in fact encouraged it. We have less money but my quality of life has improved.

[Hils67 in reply to Mcd04]

thank you…I have contemplated applying for PIP but I fear some of the reason for not being able to do a good job is lack of motivation along with the fatigue. If I’m doing something I love like my hobbies I’m nowhere near as bad…it’s a bit like chicken and egg. The fatigue makes me demotivated then the demotivation feeds my fatigue!

If we could survive on my pension now I’d take it early, but it wouldn’t be enough to pay the mortgage and bills, which I think would be very stressful. But I will certainly look at the PIP form, thank you xxx

[IAmTheGlue]

*hug* I’m sorry you are going through all of this.

Regarding your lack of sleep, I got much relief with a casein protein shake at bedtime and melatonin. I’ve tried both separately, but I am going to start doing them together to see how that goes. Your body does all its repairs while you are sleeping which is why sleep is so vital. Maybe if you can get that lined out, you will start to feel better.

I do not work and probably could not at this point, but it does sound like you are under a great deal of stress from your job. I’m glad they will allow you to work from home. I hope you can get in with a better doctor. ❤️

[Hils67 in reply to IAmTheGlue]

thank you, I’ve heard about melatonin for sleep…I’ll look into it more. Hadn’t heard about the casein protein shake though…I’ll look it up.

Yep, getting a good doctor is challenging here (West Wales) our poor nhs is so underfunded.

We’ll see how my occupational health appointment goes on Tuesday 😊 xxx

[LorraineLouise]

Hilis67

I totally understand. I, too have PBC. I am 65 and still working. I have cut down to three days a week. Just as your stress is, the absolute worst thing for my well-being.

I was recently put on Azathioprine. As I suffer from rheumatoid arthritis as well. It is help me tremendously. My Alt Phas , even or Urso, has been around the 200s. For the past seven years. Within six weeks of being on the azathioprine. My alt Phas, is down to 140.

I have also been put on doxepin, at night. I haven’t had an itch. And it helps me sleep as well. I didn’t like adding any new medication. But my quality of life has improve tremendously.

I am absolutely not a doctor. I am just stating what has worked for me.

Hope this helps,

Lorraine Louise

[Hils67 in reply to LorraineLouise]

thanks LorraineLouise thats good to know and I’m glad you have something which works for you. I can’t imagine still working at 65…I’m 55 right now and am determined to retire by the time I’m 60…if not sooner. Interesting about the arthritis drug lowering your ALP. I always get worried if mine goes above 200 as I feel like the PBC is taking hold. Thank you for listening xxx

[LorraineLouise in reply to Hils67]

I was retired, but financially it just wasn’t working. I had to go back. Social security, just isn’t enough. I’m alone so it’s difficult to make ends meet. When I was not working,for about a year. I was feeling much better

We do what we have to

I wish you well with your journey

Lorraine Louise

[Hils67 in reply to LorraineLouise]

aw I understand, I know if I could afford to retire now my health would benefit but as you say, social security isn’t enough and we have to do what we can do. I’m hoping dropping to 3 days will help and hopefully still bring in enough money to pay the bills xx

[Charlie-Farley]

Hi I just fell upon your feed- I’m normally hanging out on the thyroid forum, but a link to hypothyroidism and PBC peaked my interest months ago, though I haven’t had chance to research further. I’m just wondering if anyone has checked your thyroid function. Please note NHS test utterly inadequate, but you can get a full thyroid function and vitamins finger prick blood test from one of the labs recommended by thyroid UK or a monitor my health one will do a simple FT3, FT4, and the dreaded TSH. If you do decide to investigate this please get advice from the forum before forging ahead. There are some fairly fundamental problems with the interpretation of blood tests at GP level and you need to be fully versed from the outset to hopefully avoid what many of us have experienced. If you join the thyroid forum you will be able to read my bio which I have written a bit like a case study. Hope you don’t mind me suggesting but it’s a disease that can be missed for years and even decades especially when we are also menopausal. I too cared for parents- you have my deepest sympathies 😔❤️

[Hils67 in reply to Charlie-Farley]

thank you for the suggestion. I’ll read your bio. I did have a thyroid blood test and it was normal, but I’ll look at your post.

After having a week off work for the Christmas holiday I’m feeling much much better in myself, sleeping better and much more normal. So I think my main problem is sitting at a computer all day…but I have to pay the bills. But I’m definitely reducing to 3 days now. Thanks for your suggestions xx

[Michcook54 in reply to Charlie-Farley]

Just reading your reply to another PBC sufferer. I saw that you suggested a Thyroid test, I was wondering about that as my last TSH came back high, but not the FT3, I'm not quite sure if there is a link or not but when my dr saw the high number from the lab draw from my pcp he suggested getting ANOTHER test done to confirm. Is this something I should be worried about as far as severity with the PBC? All this is so confusing as I have ALOT going on with other health issue including Pancreatitis. I to will go to the thyroid forum and read your bio. Thank you for sharing with us. I hope that 2023 finds your happy and healthy.

[Charlie-Farley in reply to Michcook54]

Hi Michcook54,

The most you usually get out of an NHS test is TSH, thyroid stimulating hormone (not a direct measure) and Free T4 which will be converted to FT3. The results come with ranges in brackets which should be quoted when seeking advice 😊👍. Oh and there is no such thing as ‘normal’. That’s a term used by doctors who haven’t a Scooby Doo. We would need to see results with the ranges in brackets. However if your doctor was noticing a high TSH yes come on over to our forum. TSH is useful to identify hypothyroidism but no good for management. Unfortunately practice lags behind research and training is woeful. If you have got hypothyroidism you really do need to get up to speed and be sure you are managing it correctly. I had a wake up call when I realised my doctor was clueless. See you over there! 😉👍

- oh FT3 and FT4 won’t be high if you are hypo they often scrape the bottom of the range or even worse drop below. These are the thyroid hormones and these are the measures that SHOULD be used for management- along with, VERY IMPORTANTLY, symptoms which invariably we suffer and doctors ignore. 🤔

[FurbabyMama]

I am so sorry you are going through this. I highly suggest applying for disability. I finally got approved for both SSDI and VA disability - and that has been a godsend. I have had most if not all of your symptoms as you described them. PBC sucks - that’s for sure. Don’t stop advocating for yourself! I’ll keep you in my prayers!

[Hils67 in reply to FurbabyMama]

thank you🙏🏻

[Turquoise2075]

Hi Hils67

I just thought I’d mention I’ve been on melatonin for a few weeks now and my sleep has much improved. At the end of October my oestrogen dropped with quite strong perimenopausal symptoms setting in. I felt extremely low and was often only sleeping 2-4 hours a night when previously my sleep had been quite good. I’m now back to 7-8 hours a night.

I’m also on a supplement both my doctor and naturopath recommended for the low oestrogen. It apparently works on the oestrogen receptors (so different to directly taking oestrogen). I feel like it’s working in that I’m feeling better in terms of mood. It’s a herbal medicine so I have no idea how it would interact with other meds you’re on. You would need to check medical advice on that. I’m in Australia and it’s from a company here and it’s called Metagenics O-Lift. There may be a UK equivalent. just thought I’d mention it as another option but I don’t know enough about it in relation to already being on HRT etc.

Hope things are going better for you 🙏

[Hils67 in reply to Turquoise2075]

I’ve heard good things about melatonin. Thanks for the suggestion I’ll look that company up and do some research. Thank you 🙏🏻

[Lu11]

Its menopause! Menopause has done a number on me! It’s been a year and a half and I’m still adjusting. I can’t handle stress the same way as pre menopause and I ended up with autoimmune problems! I still struggle with waking up in the middle of the night or too early in the morning, despite taking progesterone and magnesium. I had to quit my job and now I’m getting ready to work 2 days a week…wish me luck! Keeping stress under control is key. Also moving and eating healthy. I now do some movement when too tired to actually work out. Some stretching and gentle moving makes a big difference! A physical therapist taught me this! Getting up and moving every half hour will help I’m sure! I hope little by little you feel better!

[Hils67 in reply to Lu11]

aw thank you and sorry to hear you’re going through it too! I’m sure a lot of my symptoms are due to the menopause. I’m taking HRT and that has helped somewhat. But what has helped me the most is being off work for 3 weeks over Christmas…giving me time to pay attention to my diet, sleeping and eating…I’m dreading going back on Monday, but I have reduced to 3 days so at least I can pay the bills.

You’re right about stress…and stress is the worst for us…both in terms of the menopause and the PBC. I’ve just started again with doing my yoga in the morning, just 25 or 30 mins and that’s helping a lot.

Good luck with going back to work 2 days a week 🙏🏻😊

[Deemum]

dear Hils

Just reading this now. I hope you’re feeling okay about going back to work. Hopefully Occupational Health will advise a longer phased return. I’ve just been diagnosed with PBC and on UrSO now. The fatigue is not good so I totally understand. Take care and I’ll be hoping it works out for u x