Newly Diagnosed PBC & SS : Hi all, I am so... - PBC Foundation

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Newly Diagnosed PBC & SS

Shashwoo profile image

Hi all,

I am so glad that I found this community :)

I was dx with Sjogrens in November and put on 200mg of Hydroxy twice a day.

I was dx with PCB on Christmas Eve and put on Urso 250mg three times a day.

Prediagnosed I was suffering so bad with tiredness, I mean you could count backwards from 5 and I would be asleep. I had to have naps and early nights. It was awful.

2 months into my Hydroxy I am now struggling to sleep I am tired but I can't sleep, I am waking up numerous times during the night, maybe twice an hour every hour.

Does anyone else suffer with this?

6 Replies
PBCRobert profile image

Hello and welcome.

I am sure one of the many people with PBC and Sicca Syndrome (dryness, be it fromm Sjogren’s or otherwise) will reply soon.

Meantime, I hope you have taken time to also join the PBC Foundation. It is free to join and they have a number of services, including this forum, that they offer.



Shashwoo profile image
Shashwoo in reply to PBCRobert

Hi Robert, I have joined the PBC Foundation, I received a lot of great information through the post, this was back in November when my Consultant was just talking about me having PBC however now I have been diagnosed I will deffo need as much information as I can get.

Thank you for taking the time to reply. xx

Hello Shashwoo

I have PBC and sjogrens syndrome.Ialso take hydroxchooroquine. I also have very bad fatigue despite this I often find I am awake until very late for me it's mainly pain in my legs which keeps me awake.I didn't notice any difference in sleeping with hydroxchooroquine but over time it seems to be helping to some extent with how I feel although because of another condition vasculitis I also needed an other stronger immunosuppressant so it's hard to know what's doing what.If the problems sleeping are new for you I would check with your GP.Its frustrating being exhausted but not able to sleep I find listening to the radio quietly helps to take my mind off it.Jane

Shashwoo profile image
Shashwoo in reply to jane1964

Hi Jane,

Thank you for your reply. I'm sorry to hear you are having pain and trouble sleeping. It really is a nightmare.

People think because you look ok you can't be that ill but sometimes the flare up's floor me (well couch me haha)

I am taking this one day at a time and I am thankful that I have a supportive family. xx

jane1964 profile image
jane1964 in reply to Shashwoo

Hello again I found this article on fatigue really helpful it helps explain just how it feels.I also look ok! For me the fatigue has been life changing but learning to live as well as i can with it has helped.

SueLondon profile image
SueLondon in reply to jane1964

Thank you so much for pointing me in the direction of this article Jane, it completely sums up how I feel most of the time and at last I can show it to my husband to fully help him understand the problem of chronic fatigue and just because I look ok doesn't mean I am. Thank you again and hope you keep well.

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