Lately, my labs have been improving and I was hoping I would start feeling better. For a few days, I wasn't nearly as fatigued and really got my hopes up. Now, the past several days, I've had very little energy....just totally zapped. Even coffee and almost 8 hours of sleep at night aren't helping.
Is it normal to have good days and bad days? And, if so, is how you feel an indicator of whether or not your condition is improving?
Also, I'm on prednisone, cellcept and urso - can any of these drugs make you feel fatigued?
Thanks!
Karen
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KarenRL
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Well if you can say the phrase, 'speaking from experience' (as we all have PBC on here!), I started out probably with the fatigue and tiredness but never thought anything of it, just put it down to working long at hours at the time (the itching that started prompted me to see a doctor).
I started on urso quite some months after starting with the itch (around 8 months to be precise) and slowly with being informed I had PBC (I was in denial for some time and even now part of me thinks it will just go away), I along with my husband started to make some lifestyle changes. Tho' not possible for a lot of people, I had started to research what I could have long before PBC was ever mentioned by a medic and tried to improve my own life (I was never a big drinker, rarely went out at night over the years with having children and as soon as I had the first abnormal LFT I never had alcohol again and nor have I since then (out of interest I do not even think about it, was never that bothered before)), I did notice that I started to feel much better before starting urso and being diagnosed. I noted from the last reading I had prior to diagnose that there was slight improvement and that ws without any medication.
I too have days where I feel like flagging later in the day but the only thing I can advise that seems to work for me is to try to stay as active as possible all day, only sitting for a short period of time for meals and then maybe a couple hrs before bedtime. Even tho' due to the itch I do find odd nights that if I wake up I struggle to return to sleep and that in itself causes fatigue the following day.
I have thought about your question with regards to how you are feeling and an indicator as to if one is improving and I can't seem to fathom that one out (yet)!! I had my last LFTs in May and despite the 3mths prior to having them I really did think they'd be as bad as those due to feeling a bit more itchy and also having the good and bad days, I was surprised to see that they were as good and 2 slightly better than the highest readings I had since starting urso Dec 2010 when 5mths on urso had showed definite improvement.
I think we have to go with how we feel. I know for me things have settled as in I sort of know the PBC drill these days and dread the evenings as gone 9p.m., I wonder if I am going to have an itchy night (I have what is termed cyclical as only tend to itch at night). I ignore the days when I feel like flagging as I really just think it could be the PBC that is causing us to feel like this.
Years ago I had some experience of a prednisolone (or prednisone) user (late husband) and when he had courses of these he was like the road runner as they are steroids. He would then have to wean himself off them as that was the norm then (for asthma) and got to the stage that a fortnight later he was really flagging. You didn't say how you take yours and that's all I can say about those but perhaps someone else on this site can add more as I know that there is some on here with AIH and they have stated they take steroids for those.
You mentioned coffee. I've never been a big drinker of the stuff myself but I did read last yr that coffee can be good for the liver but should only be drunk in certain amounts. I started having a fresh coffee with breakfast and then one at teatime. I also eat a good breakfast with urso on the side (!) and a good lunch and then snack with an urso about an hr before tea and then after tea is done, I don't actually eat anything after around 7p.m. I have to say I do feel better.
You shall have to keep us all posted.
Hi Karen, I have been diagnosed with PBC since January 2010, prior to my diagnosis I was being treated for hepatic sarcoidosis which I have had since 1996, I had a liver biopsy in 1998, I have both of these ailments to contend with, I was really fatigued, and felt absolutely dreadful and was given large doses of the steroid prednisolone, which as Peridot states I had to reduce the dosage in stages, otherwise you can be very I'll, I had to carry a blue card at all times, to inform medical staff of my condition, (in case of accident). The steroids, as well as making me feel better they made me gain weight, I went up to 14 stone, (thankfully now lost the weight) my bloods were still very high, the steroids were not making any difference to my LFT the consultant told me to reduce the steroids down to zero, I then had an MRI scan in December 2009 and when I got the results from that, which was early Jan 2010 I was given Urso, and told I had PBC, test for AMA confirmed the diagnosis. Since being on Urso, my bloods have come right down to near normal levels, although I'm still fatigued, some days are worse than others, I work full time, at a desk job, when I get home from work, I'm absolutely exhausted, I'm usually in bed ready to sleep by 20:30hrs, then I'm up at 05:15hrs to get ready for work, I leave the house at 06:45hrs, I spend the weekends getting over the week! As far as I can see I have no quality of life, although i'm 60 years of age, I cannot retire yet because the government have moved the goal post! But you have to look on the bright side, some people are a lot worse off. Keep your chin up as they say, Bye for now ??
I have been told there is no corallation between the progression of PBc and the symptoms. I have been diagnosed with PBC for 8 years and still have some days of total wipe out with no precursors. The wipe out days seem totally random but on all other days include the 'struggle' days I try to do some exercise which often improves my energy levels.
Hi Karen I think the tiredness can vary - mine has not improved with URSO unfortunately. There is absolutely no way I could stay awake all day - on average 6 hrs max, before I get that feeling of Im going to faint, go cold and really feel ill, thats when I have to sleep during the day or I would actually collapse. This could be 20 mins or 2 hours depending on the day.
I think it varies a great deal from person to person - but if you cant cope with a full day on the go you have to learn to pace yourself - Good Luck.
I asked my doctor this question regarding my AIH/PBC overlap syndrome. His answer made total sense for my as I am on an autoimmune drug called Azathioprine (for AIH) and Urso (for PBC):-
"Inside your body is a battle ground with the Aza fighting against the white blood cells and visa versa....... Bound to make you fatiqued at times."
Do you have AIH as well as PBC due to the fact that you are on steroids? I have just come off an 8mth course of steroids. They brought my LFT's back to normal and helped with my symptoms. Now I am off them my LFTs are being kept stable by the Aza and Urso but my old symptoms are creeping back! Just got to get on with it as best as we can as long term steroids is not a solution. I just need to pace myself. Take care. X
HI, like JerseyChris, I too understand that there is no corallation between the progression of PBC and the symptoms. I also have to deal with fatigue but, as with many people, this varies from day to day. I'm not sure how much of it I can blame on PBC, as I am also at that time of life when hot flushes wake me up several times during the night, so am exausted from that. I do find that pacing myself helps i.e. not overdoing it on the days that I feel good, occupational health dept. at work have been very supportive and some good advice was (extreme example but) " if you feel you can run 20 miles, just do 10"
Thanks for all of the responses! You guys are very helpful.
It sounds as though the "good days and bad days" are pretty normal and that it doesn't mean I'm not getting better...which is good news.
I do have AIH/PBC Crossover, which is why I'm on the steroids and cellcept (sorry, I failed to mention that). I take 10 mg. of prednisone in the morning and 10 mg at night. I'm really hopeful that I won't have to be on the steroids for too long, as the side effects are awful. I have been trying to eat healthy and go for 30 minute walks at least 3 times a week. So far, after 3 months, I haven't gained weight. But honestly, given the lifestyle changes I've made, I would have expected to lose weight....so, I guess I am just maintaining.
I was hoping the exercise would increase my energy level, but that doesn't seem to be the case thus far. As JerseyChris mentioned, there really doesn't seem to be any pattern or reason to when I feel more fatigued. I guess I was just really hoping that as my body responded to the drugs, the fatigued would go away and I may start to feel like I did about 1-1/2 years ago. I'm only 41 years old and would love to feel my age again. It just gets depressing some times....feeling like you have no control over your own body and the way you feel.
But, as Dinny mentioned, many others have it way worse. I try to remind myself of that when I'm feeling low.
I was sort of thinking about your question over the weekend, moreso as I originally thought very like you with regards to gauging this PBC thing with how we feel.
To add further to my original reply, at present I do have odd times where I feel tired later in the day but just plod on as normally if I do stop I know I'd perhaps feel sleepy and then won't sleep at night as I have restless ones when I have the itch that is a bit more of a nuisance.
Given currently I only have the itch and fatigue if I can actually really count the second as for now I'm ok with that one (I'd rather feel tired than itchy), I will go with whilst I have no other symptons, it can't be getting much worse. I know there are certain symptons one can also have with PBC but if they are what is considered the ones that are more common and shown at 'the start' (for all I know I could have had this PBC thing for yrs prior to starting with the itch in 2010), then I'll take it that way.
Also if the LFTs can improve some and then eve more so a few months later and then slowly take that downslide once again to what they were at the start of taking urso in a yr to then improve vastly in another few mths then things have to be notso bad surely? If there was no improvement after time and only downslides then that would signal something different.
All in all I just don't try to think about it, what could happen as probably already said, no use thinking about so far ahead if it might never be.
Having been diagnosed over a year ago I thought the fatigue , tiredness bouts and aching joints were due to pbc and doing as Karen trying to stay as active as possible. Following recent blood tests, having talked to my consultant about my raynauds symptoms seemingly becoming more prevalent, I found out I now have an under-active thyroid which has made so much sense to how Iv'e been feeling recently. Don,t just presume your symptoms are because of pbc.
You make a very good point. In my case, I had my thyroid checked, because it runs in my family and I was really hoping that's what my problem was. Unfortunately, it wasn't....and I was later diagnosed with AIH/PBC Overlap Syndrome instead. But, it is smart to get the thyroid checked. My Dad was experiencing fatigue and elevated liver enzymes and it turned out that he had an underactive thyroid....so, the symptoms are similar.
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