Hi I'm Sue

[highwood]

I was diagnosed 2 day's ago. Can anyone tell me if severe sweating (flushes) is part of PBC. These are not your normal hot flushes. I have joint pain and my back completly went in January pain was the worst I have ever had, just wondering if this is all part of PBC, have ultra sound scan on Friday. Thanks

[Kaywal]

Hi Sue and welcome. I have some symptoms very similar to yours. Does the back problem stem from your right side pelvis? I get what the doctors call 'flushing' and it's not related to menopause becuase it only happens when I eat. Doctors have been unable to explain it but after years or trialing different things I'm pretty sure now that it's caused by acid which affects the vagus nerve which regulates the heart. I now take a PPI daily (as well as Urso) which reduces the amount of acid in my stomach but I also have to avoid certain foods quite strenously. This all works if I can remember to a) take the meds and b) give up all the stuff I like to eat and drink! The 'flushing' also affects my sleep pretty badly. Also I used to suffer from very bad joint pains but I've been on Urso for three years now and I no longer do (apart from the pelvis/back problem which is no where near as bad). Hope that gives you some hope. The problem is there is such a wide range of different symptoms that the doctors don't seem to have answers for us (which is why this site is such a godsend!)

[highwood in reply to Kaywal]

Hi Kaywal, Thank you. My back problem is in the lower part and is right across back. I also take meds for heartburn had an ulcer in osophaegus 3yrs ago. My 'flushing is really bad especially at night, I was on HRT for 21yrs but they took me off it as I had a DVT. My GP was paranoid about my case ( I had a TIA in2005, Temperal Arteritis in 2006) I was pestering her to go back on HRT, she wrote to a Haematologist who said NO!!! so she sent me for an autoimmune blood test, apparently they had been keeping a check on my liver since 2006 when i had to take large doses of Steroids for Temperal Arteritis. I don't know if i should be concerned about being diagnosed with PBC or if i am feeling poor me or in denial, i don't want it to take over my life, hope people understand this. Sue

[Kaywal]

Hopefully you'll find things improve for you after you've been on Urso for a while - I certainly did but everyone's different. You should join the PBC Foundation too:

pbcfoundation.org.uk/

They'll send you lots of info and let you know about support groups in your area. All best wishes K

[Gioielli]

I also suffer from hot flushes - particularly at night time - and have had them for about 18 years. Also on HRT for many years but taken off it now. Did ask the question on this site to see if anyone else had them and many said they do - quite a few too young to be in menopause. I have a feeling that as the liver controls the heating system of the body then PBC may affect this system and so the hot flushes. Since being diagnosed over 3 years ago and being put on Urso I do feel better in myself but the hot flushes haven't improved much at all. PBC is manageable but so little appears to be known about it! Take care x

[highwood in reply to Gioielli]

Thank you for this, it's good to know your not alone. Had my liver ultra sound today, Dr said "all seems fine". So I am hoping when I see Consultant on 4th June i may have been mis-diagnosed or my liver is not yet scarred.

Take Care x

[Hidden]

I have severe sweating so much so that you would think I have had a shower in the bed, I went back on HRT but it does not improve the sweats. The sweating was the first reason I went to see my GP and they thought I had cancer in fact they diagnosed me with non hodgkins lymphoma at first, Then my back went ( a fracture of the spine ) and I have now been diagnosed with severe established osteoporosis. I also get bad attacks of shivering so much so that I visibly shake and have to lie in front of the heater.

I really think this sweating is a PBC symptom as HRT does not help it, waking up in the morning with a ringing wet bed and hair plastered all over your head is not a good start to the day.

[highwood in reply to Hidden]

Hi Linda, The sweating was the reason i also went to DR's 2 years ago, we both put it down to coming off HRT after 21yrs. then they changed and got worse completly different from hot flushes. Had liver ultra sound today hoping i have been mis-diagnosed( wishful thinking i know) but today is the first day i have felt positive since having autoimmune blood test, which came back positive for liver 7 week ago.

Keep well + Take Care, Sue

[Hidden]

This is what I tried to tell my GP I know what a hot flush is like as i had a full hystorectamy 20 years ago and boy did I get them then, but these things now are full blown ringing wet sweats, I feel so depressed on waking in a morning it's untrue, some days i would just like to wake and get dressed straight away as i am hurting so much I cant make the shower ( ours is an over the bath one and I cant manage the climb in ) so a bowl and over the sink hair washing is called for, It's not fair that some can wake dress and do stuff straight off :o(

By the way I can only sleep with a cotton sheet and a cotton blanket and nothing else, a quilt is now out of the question, and I have had to buy hospital quality wipe clean pillows.

[highwood in reply to Hidden]

Hi Linda I had a full hysterectomy at 27 in 1977. I must say i am very fortunate in having 2 female GP's at my practic who are extremly caring and thoughtful, and very muchon the ball. My night sweats have improved but i know where your coming from, mine used to be that bad.

I know I am fortunate because i also have a caring husband and family, but sometimes i have a bout of poor me, which i feel is quite selfish on my part as , there are so many others worse off than me. I hope and pray that your sweats improve. Take care. Sue

[Axl888]

I have always as far back as I can remember had sweating but only on my head. As a teenager, I could only do a couple of dances at the disco and my head was wet through. I wasn't overweight or unfit so it wad not down to that. Over the years, it has improved slightly but still get it. Other than that no bad bouts of sweating, but have had really cold shivers on occasion that couldn't be explained away.

[highwood in reply to Axl888]

Thanks for replying, I would just likr to have normal body temp. I would love to wear jumpers and winter clothing but, I can't.

Take care Sue x