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PBC Foundation
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post transplant issues.

hi 4.5 months post transplant... was really good for first few months but feeling much worse now.... bloods okay but awful tummy troubles... very loose stools (no bugs... already been checked)... and cold a lot of the time with hot flushes. menopause has been mentioned but also have temp if 35.5 or similar a lot of the time with raises to 36.8/9... wondering if this means ive got a high temp at these moments... tried to ask t. coordinator but i think she thought i was getting paranoid about temp.... im not but do wonder if could be relevant.?.. anyone else had a similar problem?

i know i must have had a honeymoon period when I was taking the steroids... which have stopped now. such a shame that the initial improvement has faded... any thoughts folks. thanks cazer.

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Hi cazer, sorry you are not feeling great and I don't really have any advice, I have a similar experience, hot flushes possible menopause, loose bowels got a bit better when I stopped taking mycophenolate but still happens someone said to me it may be related to having no gall bladder anymore but I have had lots of tests and not had any answers, things did seem to be worse for me probably about the same time as yourself but it does get better, I hope things improve soon for you, take care of yourself 🌸😘

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thanks for your reply... glad you could throw a little light on it... pancreas insufficiency has been mentioned and test has gone off... so hopefully that might throw some light.

did you have to take something instead?? cheers cazer. x

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Hi cazer, at first I on azathioprine and prograf, then they changed the aza to mycophenolate then stopped the mycophenolate so I just take prograf now, it definitely helped with the bowels but still not right I have actually to go for a biopsy 😱 tomorrow as my tests are a little bit off, message me anytime I don't mind πŸ€—

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thanks... good luck for tomorrow. best wishes cazer

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Thanks for the good luck wishes, got my big girl pants on but it's not working tiny bit terrified n don't know why had biopsies before but feels different this time, I'm very protective of my new liver and kinda don't want to let them touch it haha but sure I'll be fine 😳😳

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yes i feel much the same... im proud of my scar and call my lumpy bit my liver baby..!!! very sad really...!!!!

im sure they will be gentle as well... xx

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Yip me too I have a lumpy bit at the side that's quite a good description of it haha ☺️

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lm so sad that I even should my gynae consultant my scar... no hope... ha ha.!!!

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I was a bit like that and when I didn't show it off one of my kids would, worse one was parents night at school and my son kept trying to pull my top up to show all the teachers πŸ˜‚πŸ˜‚ although I must confess I am rather proud of my scar 😘

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ha ha... unfortunately my children are too old to show off my scar!!! im very envious.

i do find myself asking people if they would like to see my scar... are we mad or is it a side affect of the meds...???

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Methinks a bit of both maybe but it is a magnificent scar i love it πŸ’žπŸ’•

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πŸ˜‚

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hi πŸ™‹ hunny. You sound just like i did in my posts. Tummy troubles ended up being gluten for me. The temp and flushes made me think i was having a 2nd menopause. We can't take hrt but i got clonidine prescribed which help a lot. I still get spiking temps mainly at night but nobody seems to be bothered anymore. Hope u get sorted. It helped too when mycophenolate got stopped. Good luck hunny xxx 🐾🐾

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thats very useful... especially as they are trying to blame on the menopause. thanks cazer.

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i had already had the menopause at 30 they did try blaming it but couldn't after I've already had it. Oh I'm always whipping my scar out. Don't care where. First time was in a phone shop. Lad nearly fainted πŸ˜‚πŸ˜‚

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Hi Sheri , how are you doing these days keeping well I hope πŸ€—

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hey sugar. I'm ok. Just had my hernia fixed on my liver scar. 2weeks today πŸ‘πŸ» resting is getting boring again must admit. How's you? πŸ’ž

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Hi cazer so sorry to read what u have been through and u are taking time to advise me as well . Trying to return the favour .low temp can be hypothyroid .not normal to always read lower than 36.5 at least .I was 36.2 all the time before treatment .sorry if this crap advice .also have u had your Perimenopausal blood test done . There is a definitive blood test to show if it's menopause .

Poppy

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thanks... yes im in menopause but the gynae man said that didn't prove that symptoms were meno or meds.

one of anti rejection drugs is being reduced slightly... so crossed fingers that will help tummy!!! got to get a new thermometer.. so will check again...

both doc and consultant were uninterested about temperature... I was trying to find out whether if mine is normally low then if it goes up does that mean it could be high for me??? but the consultant just said not to worry about it

didn't get that!!!!!

so im none the wiser.!!!!

thanks for concern. best wishes cazer. x

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