Just wondering if anyone whos had a transplant got hot flushes... im finding it difficult to deal with. asked consultant about it but he just asked if id had the change... don't think it is that as im on steroids. i wondered if its antirejection drugs?
any thoughts... thanks cazer.
hi 🙋 Cazer. I suffered with them. Felt like a second menopause I already had one after a hysterectomy at 30. I went to clinic and told them. were not allowed hrt but they asked me to go to my gp which shocked me a bit. my gp gave me clonidine which has really helped. No longer get them now. Hope this helps you. Apart from that how you feeling? 😻 xx
thanks that's really helpful... will ask again. im doing quite well i think... still getting quite a bit of pain when I bend or stretch or get scrunched up. also feels like everything is more swollen than a couple of weeks ago but I'm not sure if its everything tightening up!!!
early Days though... think im expecting too much of myself maybe... how did you get on.... did you have any hiccups?
nearly had to go back in for biopsy but just escaped it.
temporarily diabetic from steroids but trying to walk further each day. best wishes cazer.
hiya. Sorry i didn't reply sooner. Im being sent for a lot of scans re kidneys & spleen. I had hiccups a lot but eating was an issue for me if you remember the gluten etc. Tightening does happen. Just do baby steps huni. Your doing great 👏. Why the biopsy? Glad u escaped it though.. My diabetes has been excellent since my transplant that's one thing in my favour. Hope yours is only temporary. I know what you mean pain with bending etc. I got stuck. Didn't have upper body strength to get bk up. 😳😳 its still early days for you. Pls don't push urself. It will all work out 💪 you will be back to feeling human again soon. Proud of you. You know where i am if i can help with anything. Much love to you yours & 😻 xx
thanks so much... its the liver under the ribs like before the transplant that's a bit disconcerting but as you say its early days.
im trying to walk a bit every day but am trying to be fairer on myself.
its all a bit unreal isn't it!!!!
im sure im okay but just get a bit on edge some of the time.
how's the gluten free going? have you managed to get used to it.?
hope you are okay? best wishes cazer. xx
the biopsy i think they thought something drastic was happening as my alp level was 1400!!!! luckily it started to calm down a bit so that's how I avoided it. x
ahhh i see. Glad its going down. Yeah its very unreal. Takes a long time to get ur head around things. GF I'm getting used to it now. Thankyou for all your help with that. The cat 🐱 is rubbing his face against my phone. Think he wants to say hi 🙋. Lol .. I understand what u mean being on edge. Each little thing can make u panic that something isn't right. It will settle. Honestly. I'm getting a lot of pain under my ribs but I've had severe gastritis and a kidney infection again. Spleen is very large atm. Think that's were my pains coming from & in my left shoulder when i breathe at times. Lots of scans coming up from fri this week & every other day Nxt week. Can't say nothing is being done can i?. You still taking ur pain relief when u need it? It does help. Walking is great for stamina but always remember wherever you go you have to get back. I learned that lesson a fair few times. Making sos calls to pick me up 😂. Hugs from me & Ollie 🐱👤 ---- looks like him xxx
Congratulations with your transplant. I did not have a transplant but I'm always very hot in my house. I keep the air conditioner on 74 and sometimes 73. My husband and daughter are always cold. I take azathioprine, prednisone and Urso. What meds do you take and now that you have your transplant does this mean that your Pbc and other symptoms are cured? Some people say they are fine while other complain of weight gain and symptoms are still present and they have to take Urso or aih meds for life.
I am happy for you that you got your transplant abs I wish many many years of happiness and health for you
Hi cazer, I was the same as yourself and I think it's down to medication, I'm convinced it was tramadol that made it worse for me, you will find a difference after 3 months when they withdraw the steroids, well I did anyway, I still get the hot flushes sometimes but nowhere near as bad and it could be down to my age as I am 50 next month, just go easy on yourself, take care 💖
I am 14 years post transplant and still get the occasional hot sweats which I think are caused by the medication I take. In answer to Jennyhadenough transplant is not a cure for PBC only a treatment. I have to take urso for the rest of my life.
Pbc post transplant 
Are hot sweats normal for pbc
Transplant Week
Negative m2/5 weeks later 1300:1, 7 years AMA positive 
