PBC

[marlene124]

Please tell me what can I use for the tiredness.It is worst the past 2 weeks.

Thanks

[Hils67]

Hi Marlene - I wish I had an answer. This constant tiredness really gets me down. I'm very early stage of PBC, so in a way I'm really lucky. I'm responding to URSO. My itch isn't too bad - some days/nights worse than others, but I'm having trouble sleeping properly at the moment. Really not sure if it's the PBC or menopause starting, or just stressed out from work, but a disturbed night leaves me so tired the next day...well for days actually.

I just feel I want to sleep for a few days to recharge my batteries - but it doesn't seem to work. I think reducing carbs in the diet is supposed to help - so I'm going to try that again. I managed a week of low carbs a couple of weeks ago and I did feel like I had more energy, but it takes a lot of effort and planning.

Sorry - I'm not much help, but just to say I know how you feel. Other people just don't understand how utterly miserable being constantly tired can make you feel.

Hope you feel better soon.

Hilary

[Hidden]

Hello marlene124.

Unfortunately as I know (diagnosed 2010) there's not really much we can do for tiredeness or fatigue in PBC.

I get tired myself of an afternoon at times if I've not had a good night due to having the itch associated with PBC. I find with myself I have to keep on the go and as silly as that sounds I find that it can pass. I know in my case if I sit for long periods of time and am not doing anything then I start feeling prickly which is usually the prelude to the itch.

I think routine seems to be one way of trying to combat feeling tired a lot. I make myself rise early morning (6.30a.m most of the time) and then have a rest at lunch, sit to eat lunch and then if I'm doing something that involves sitting down, I find it can be a bit restful.

Due to having the itch I find I can't go to bed until nearly midnight as if I go early I find I can sleep but then wake up not long after and I'm in for one restless night.

All I can suggest which might not be much help is to maybe try to eat energy giving foods that are said to be healthy.

I am not sure if there is any medications for tiredness so can't really respond there.

[marlene124 in reply to Hidden]

I get injections every 3 weeks for the itch it is terrible. The doc prescribe also cortisone cream.I taking 9 Ursotan pills a day. But the marks on the skin from all the itching looks bad. I think the main thing is I must make time to rest.

Thanks for your comment.

[Hidden in reply to marlene124]

Hello again marlene124.

Out of interest, what injections are you having for the itch? Does it seem to work for you?

I am in the UK as I suspect you might not be with the given brand name of the urso.

The first line of defence in the UK for the itch seems to be Questran (brand name) colestryamine as it goes by generically. There are then other meds that can be tried. I've been unreluctant to ask for anything for the itch due to Questran being hit and miss. I also do not want any side-effects from additional meds. I only take urso.

[Gioielli]

Hi Marlene, I take Calceous which is prescribed by my heptologist to improve my Vit D and calcium levels. Have found this really helpful. Still get tired but not like before. Also take 1000mg of krill oil daily and this seems to boost everything!

[marlene124]

Thanks Gioielli

[PCBnPBC]

Marlene124, I take rest for my fatigue ! I know that is NOT the answer you seek, in the run up to my transplant I slept 20 hours per day, before that I was awake all night and asleep all day, now I am post transplant and sleep every afternoon for 2 - 4 hours, tiredness and or full blown fatigue is one of the unavoidable effects of PBC, we have to try to manage the effect which of course is different for all of us. Balance not giving up with acceptance that we have a fatigue issue, and find a middle way of being as active as possible, but being gentle on yourself.

Good luck to all of us PBC-ers !!

[Nhaamor51]

My doctor has prescribed Provigil. I believe it was initially created to treat narcolepsy. It does seem to help but because of issues with anxiety it seems to make that worse so I only take it if the fatigue is really bad or I need to get something done I otherwise would just look at and decide to put it off for another time.

[Bookworm7]

Hi Marlene, I take the supplement co-Enzyme Q10, it really works for me, 3 capsules daily (30mg per capsule) it's worth a try.

Take care.

Debbie. Xx

[marlene124]

Thanks Debbie will do that.

[marlene124]

Thanks to all of you for the comments and support.