In my last post I mentioned I was steroid free. I went to see my consultant yesterday and my LFT's are elevated again. I am tired and thirsty and can't even do my housework because I am exhausted. My consultant wants to put me back on steroids (AIH/PBC overlap) but I do not want to take them anymore. The side effects were awful, I became a recluse because of how they made me look. There has to be something other than prednisolone. My weight is awful too, can't lose any. I actually said to my consultant that if I was forced to take something that I don't want to I will drop all medications and let nature take it's course. I also take urso which bloats me so badly I look 9 months pregnant, and mercaptopurine. She has increased the dose of mercaptopurine, but I have noticed my head is itchy and my hair is falling, not a great deal, but my hair does not fall out except in the normal way everyone else's does.
I don't know what to do, I do not want the steroids at all, has anyone else decided to lket nature take its course?
Thanks
conniefused
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Alley27
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hi Conniefused, i cant offer any advise but please try to hang in. Life has thrown you a right bugger of a blow, but listen to your body and rest when you need and take it day by day. None of my words will help much but I am sorry it is so bad at the moment and do wish you
some sunshine xxx Keep writing these blogs, better aired with friends who know how it all feels
Thank you for your reply. The last time I felt like this was when they took me in to hospital last March 2012 with jaundice. I also have some pain in right upper abdomen.. not my gall bladder as had this removed in Nov....I feel so unwell, and today had to sleep in afternoon, I just don't want to get up these days. I have just started volunteer job at CAB, and am unwell so can't really attend training. Should I stop this volunteer job. My consultant said I am not fit to work, I just want to feel useful.
I never thought I would be back at square one with the AIH/PBC I can't work and can't claim anything either. Tried to claim DLA, was refused on application and have appealed twice and still got refused.
What happens if the medication doesn't work properly? mine is not working and I do not want to be on steroids for the rest of my life. Twice my consultant has tried to ween me off the steroids and twice the same thing happened
.I am so thankful for this website, we are all in it together.
Hi Again, you seem in such a downward spiral, dont go making decisions now about giving up your CAB work, ask for some time off and do the training later. When I have felt this bad, I have a day sleep as often as i can,actually still do most weekends, and try really hard to be kind to yourself. Be you own mother to you xx dont expect to do house work, cook, etc.If a mate was ill think how you would be for them and what you would say to them, now look after just you.. the rest can and will wait.. loads of hugs and sweet dreams xx
I am sorry you are feeling so crap. No answers, but wanted to say I feel crap too - on 20 mgs of Pred at present, also PBC/AIH, bloods have deteriorated since latest reduction of steroids, haven't begun azathioprine yet. So, interested in how you get on as you are further along the crappy road than me.
And I am sorely tempted to stop the reatment if it makes me feel like this all the time. Like Lisacj says, you do need to rest and 'mother yourself'.I do get the 'wanting to feel useful' thing. I have that too, also worried about money. Take care.
I had a good chat to my family, and they say "so what if you have to take steroids, you are still the person we love"
I have just started training for a volunteer place with the CAB, but I am so unwell this week. My consultant says I am not fit for work, and I just want to get trained up so I can eventually get back in to work. I am not allowed to go back to my original job because of the risk of infection to me. These diseases are insidious and they play havoc with normal lives.
I started out on 20 mg prednisolone but in some cases starting doses have been much higher. May I ask how long you been diagnosed? I was diagnosed a year ago, came as a huge shock because I was so fit and healthy. I was so upset at first, but there is so much advice on this site and it has been a huge help to me even if just the odd vent of spleen lol..
I started on the steroids in March 2012 and was put on Azathioprine in July 2012...I was ok on that for 6 weeks then started having an allergic reaction to it. I swapped to mercaptopurine which was ok for me while I was on a low dose.
My bloods also deteriorated after my first steroid drop, because I was not yet on azathioprine, so my antibodies ran riot lol...I went back to the original dose 20 mg, and insisted I try the azathioprine as well. If your bloods have deteriorated since trying to drop the steroids, I would speak to your consultant, consider taking the original dose, and I would ask your consultant if you can start the azathioprine. Although the steroids take the inflammation down in the liver, they don't always keep the antibodies away from the liver completely.
Usual treatment for our combined situation is steroids in a suitable dose to keep the inflammation away, combined with azathioprine or mercaptopurine to keep the antibodies down.
I have had a rough few weeks with the lack of energy, sheer exhaustion and excessive thirst. I am so glad it is not diabetes...I remember that before I went in to hospital last year I felt exactly the same, I should have remembered, but at the time I was so stressed about the fact I was in hospital and shocked at what they told me was wrong that I shut things out.
I feel a little better today but yesterday I felt awful. I did go out for a curry on Saturday which meant I had to walk a long way from my friends car to the restaurant, which knackered me out lol. I think I have to pace myself, know and stick to my limits.
As for my hair, it seems to have settled down for now...I hope it does not get any worse....up side here is that as a goth I wear a wig for Whitby...but .it may need to be haired more than twice a year :).
I have resigned myself to the fact that I may have to take a small dose of steroid for the rest of my life despite my objections. If doubling my dose of mercaptopurine does not help, I will speak to my consultant about taking steroids again but, starting at 1 mg and working up to a level that keeps the inflammation away.
At the end of the day it is our lives we are talking about, and I have a grandchild in the ether so need to be around for him or her.
I know I had a downer for a while, I expect everyone in our situation would have days like this, but we are still here ALIVE AND KICKING and we have to give thanks for that.
Hello again! I'm glad you are feeling a bit brighter. It's such a frustrating illness/combination as nobody else knows anythng about it, so nobody really gets how the medications and fatigue etc can affect you. I hope the CAB will fit you in for trsining when youare more well.
Like you, i almost certainly need to find a new career (ha, ha) as risk of infection possibly too great for me (nursing). GP and cons have both said there are nurses on long term aza, and doing fine. But since beginning prednisolone in Feb I've had shingles (atypical, but 'typical' for people on steroids - in several sites) and a lingering respiratory infection, so I'm not sure I'm willing to take the risk. In Jan when I had last liver biopsy, I told myself I'd give it 6 months and make a few decisions, and guess what, next month is June and I don't feel good. Having said that, i have had a better day today, but I am a long term depressive too and of course the steroids aren't helping me there.
My usual GP is on holiday. i will try to see a different one later this week, to discuss the latest bloods, done end of last week. No news is good news perhaps, but it could jsut mean the practice is slack! Then I think cons goes away - i see him in a month when he returns.The plan is to start Aza then, I think. I'm not sure how much harm can happen if I remain on current dose till then?? (I already have some fibrosis in liver and bile ducts - I should start my own thread, i know!!). I began on 40 in Feb. I can cope btter on 20mgs - managing to read in the evenings now, which is a relief, as ' fried brain' was ghastly on higher doses.
You asked when i was dx. Well, I became ill in 1996, with an acute illness that may have been cholangitis (I wasn't jaundiced but had other symptoms, pain, extreme nausea etc). it was after that LFTs were found to be off. A biopsy was done in 1999, suggested PSC. Delay was bec I had a baby in 1998. i was late 30s then and well until I became ill. So i've had LFTs checked, sort of annually, with occasional 'remissions', but never another biopsy. I took URSO for a bit in early 2000s. then 'they' decided I didn't need treatment. I can't recall details. All a bit of a muddle.And recent reading of research suggests I should have had a 2nd biopsy - and treatment - sooner. I have dx of AIC (autoimmune cholangiopathy) which makes me a rarer bird, I think, and very little research on it, which means docs and patients are working in the dark. I think the only difference is that i have no AMA, whereas those with PBC/AIH are AMA pos. Oh well.
I worked as a carer for elderly patients with Alzheimer and Dementia. Working in a residential care home meant that I was in danger of infection from the residents.
I was diagnosed in March last year, I just went to bed normal, and woke up with jaundice, completely out of the blue. I have no idea how this happened, it just did. This is what makes it so frustrating lol....I also had my gall bladder removed in November, but have been getting symptoms like before it was removed. I did have a narrowing bile duct where they had to put a stent, but that was removed after the gall bladder op...6 weeks later..this is really confusing me lol.
I do have some down days though; I think because I am so frustrated I got this thing and am angry because I can't do everything I used to do...even volunteering one day per week with cab is too much for me...I don't want to let them down because they gave me a chance to get back in to work where others nave not....do I feel guilty for letting them down; or guilty for not taking care of myself.....
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