Hi just been diagnosed over phone with possible pbc (apparently somebody made mistake with blood test) when I asked what is that dr told me to google it - he has prescribed Urso - only been taking a few days however the last 3 nights I have been shivering and shaking yet I am burning up on the outside heart beating very fast - this lasts well over a hour and have to wear dressing gown plus fleece on bed - had biopsy booked to confirm what exactly going on- and attended but cancelled on day as no bed for me - still waiting for another app. Is this one of the side effects of this drug. I am devasted to have been told I have this as I have never had any illness but reading other people's posts on here has helped me to have some understanding of pbc.
Shivering at night: Hi just been diagnosed... - PBC Foundation
Shivering at night
I was diagnosed in 2009 and have never had those symptoms except when i had the flu.
I haven't had them symptoms neither, if anything when I get a flare up I tend to go really hot like I'm burning up from the inside, only feel really cold when I'm extremely tired.
I myself have never had those symptoms, what occurred to me was you being told by your doctor to google PBC I hope he/she gave you some reliable sources to look up.
The internet is full of out dated rather scary information, I would urge you to join the PBC foundation if you've not already done so, they support this page and you can use the link at the top of this page to join.
I was told over the phone while driving back in February. I was in complete shock. You dont know what it is and when you google it lets just say your world as you know it is forever changed. You have so many questions and no one has answers. Thank god for this site. We feedback on each other. Sometimes I feel I have a better understanding about pbc than my doctor. My liver specialist just prescribed urso and sent me on my way after one visit. He said Ill see you in 6 months. No hey how are you feeling or is the meds working. Are you in the states? Try to find a university hospital. Thats what im trying to get referred to now.
Sorry youre here and I wish you all the best.
Connie
My specialist is in Columbia MO. I am very pleased with the care I get there. My primary or my specialist would never say Google it. If you do that without info from your doctor it will scare you. Its best to get your info from your doctor or from the PBC foundation. I go to the digestive health clinic in Columbia no. I don't know where you live but if you're close to there it is the best place to go. They are connected to the university of Columbia hospitals. If all your doctor said was Google it, you need a new doctor.
Yes I have had those symptoms like flu and very cold and shaky lasts a few hours. Only ever had this at night in bed. Not sure what it is gave had PBC for 5 years and it's happened 3 times
Thank you so much for your comments yesterday I only took one tablet as I was waiting for a reply from consultant - for some reason he thinks I have a fever!!!!! and has said to stop taking them until it passes then start again and if I cannot tolerate them to ring him - I have not got a fever and I did not have the shivering etc last night.
Hi Cassie, welcome to the PBC club - you will get a lot of understanding, help and support here. Poor practice to cut you adrift and suggest you Google up your medical information. Don't believe all you read on internet as much is well out of date. Join Pbc Foundation as they will tell you right.
Urso gets blame for lots of symptoms especially when people newly diagnosed. I know I was in shock for a while which produced symptoms of its own 😃. Stay calm and be kind to yourself and you will gradually come to understand and açcept Pbc. Keep in touch. Big hug. Diane
Thanks Diane - no not going to go on Google and hopefully I will get more answers after biopsy the consultant will see me with results.
I have never had those symptoms either. However, I do notice myself to have an intolerence to changes in temperature. I often feel really cold at night. I don't know if it's the medicationmor the PBC. I'm glad you found this website. It's the best one.
Pam
Please i urge you join this.
It's uk but that's ok current members are from many countries. And it's free.
Hi Cazzie56
I have needed a liver transplant since March 2010 and quite often get a fever, my specialist the professor who heads up the Transplant Team in Melbourne Australia has told me its from a blockage in my liver. It usually clears itself fairly quickly but sometimes l need to be hospitalized for IV antibiotics and they take the opportunity to top me up with an Iron infusion, B12 injections and whatever else is low in my blood.
I have woken up every morning for over a week soaking wet from sweat. I often change my nightie during the night as I'm soaked with sweat. It's disgusting!
I am on a antibiotic every day called Rafiximin to try and stop the infection from the blocked liver.
Good luck with everything and try to keep as well as you can.
Julez1961
I am also on xifaxin and wake up soaked. I am not on a transplant list. Some days i have a lot of stomach problems between gas and burning. We have discovered that i am now lactose intolerent. Really changed my life knowing that. If you are new to pbc i know it is scary. Stay calm and do what your doc says. Do not google it. That will just feed your anxiety. It's a lot to get used to but you will learn to live a productive life with it
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