Liver problems: I feel quite sorry for myself... - PMRGCAuk

PMRGCAuk

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Liver problems

Phoebess profile image
36 Replies

I feel quite sorry for myself. After a weekend of severe pain and vomiting, it turns out my liver isn't doing so well. I'm in hospital atm, and consultant initially thought I had cholecystitis, but that doesn't appear to be the case although the presentation certainly looked that way.Theyve stopped my Mycophenolate as that may be causing the liver problem, but I've already tried Methotrexate and Leflunomide without success due to side effects. I suppose Rifampicin is next, although all of these are not kind to liver.

Consultant speaking to liver specialist and my fabulous rheumatologist to discuss next steps.

Just needed a rant and a kind listening ear x

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Phoebess profile image
Phoebess
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36 Replies
PMRpro profile image
PMRproAmbassador

Hard luck - get well soon.

Bit confused by your mention of rifampicin - that is an antibiotic, nothing to do with LVV.

Phoebess profile image
Phoebess in reply toPMRpro

My brain is fuddled after losing so much sleep Think I mean Rituximab

PMRpro profile image
PMRproAmbassador in reply toPhoebess

I meant to ask that - I thought you may have,

Kendrew profile image
Kendrew

Hi Phoebess,

So sorry you're having a challenging time at the moment. You must be feeling pretty uncomfortable if you've symptoms similar to an inflamed gallbladder.

I hope you get sorted quickly so you can begin to feel better soon.

Best Wishes.

Get Better Soon 💐X

SheffieldJane profile image
SheffieldJane

And a hug by the sound of things. Safe hands. X🙏

Phoebess profile image
Phoebess

Thanks peeps.....I feel as if I've had a virtual hug

JanetRosslyn profile image
JanetRosslyn

Big virtual hug x

Bagadash profile image
Bagadash

Very sorry to hear about your problems. I do hope they are sorted out soon. Best wishes.

keeptalking profile image
keeptalking

Sorry you’re suffering at present. Hope it soon gets sorted and you have a speedy recovery.

Jackoh profile image
Jackoh

Sorry you’re suffering at the moment. Prayers and virtual hug. Xx💐

Tiggy70 profile image
Tiggy70

Sorry to hear you’re going through a rough patch. A virtual hug is on its way to you 🫂🌸

whitefishbay profile image
whitefishbay

I hope you brought ear plugs as hospitals are so noisy. Get well soon!

MarksPoint profile image
MarksPoint

So many people are thinking of you and wishing you well.....hang in there. ❤️

Rachmaninov2 profile image
Rachmaninov2

Hope you feel better very soon Phoebess. 🌷

calibriel profile image
calibriel

So sorry to hear you’re going through all this - makes my conditions and symptoms seem trivial. Hope things get better for you. At least it sounds as if you’re getting the care you need.

Dambusters profile image
Dambusters

So sorry to read your news. I pray they find a way to help.I just had good news about my cancer being stable and was then hit with chronic pain that turned ouy to be pancreatic stones.

Hoping they are controlling your pain. Will keep you in my thoughts annd prayrrs.

Phoebess profile image
Phoebess in reply toDambusters

Ouch dambusters....so painful. Can they blast them with ultrasound like they do gall stones?

Orangecakes profile image
Orangecakes

Hi Phoebess, Poor you. Wishing for you a speedy recovery.

Broseley profile image
Broseley

They will sort you out, I'm sure. Fingers crossed for you, and a big hug.

Croft9232 profile image
Croft9232

Thinking of you x Get people watching to pass the time if you feel well enough !

Phoebess profile image
Phoebess in reply toCroft9232

My favourite pastime. You certainly see the world go round. My jaw drops sometimes!!!😬

Missus835 profile image
Missus835

We're all here for you. Hugs Phoebess. {{{{hugs}}}}

Motida profile image
Motida

Thinking of you Phoebess and hope the clinicians are all experienced and kind as well. {}s

Skysey profile image
Skysey

Hope you feel better soon. We need these meds but they can cause so many other issues.

thinking of you ❤️

Phoebess profile image
Phoebess

Great teleconsult with my rheumatology team today.I have so much respect for their professional knowledge, and they're really nice people too.My liver tests are normalising and pain is significantly reduced. Rheaumy consultant doubts it was related to Mycophenolate as that wouldnt raise my CRP, but I can't restart it until my liver bloods are normal again.

So thank you all so much for sending me positivity and healing vibes.

Bad news, is that I now know I have gall stones 🥴

Stills profile image
Stills in reply toPhoebess

knowledge is power though, wishing you a better day tomorrow 🌹

PMRpro profile image
PMRproAmbassador in reply toPhoebess

Mycophenolate can cause inflammation - Genetech says so!

"Some people taking CELLCEPT may have an inflammatory reaction with fever, joint stiffness, joint pain, and muscle pain. Some of these reactions may require hospitalization. This reaction could happen within weeks to months after your treatment with CELLCEPT starts or if your dose is increased."

gene.com/patients/medicines....

Under What are the possible side effects? Inflammatory reactions.

Phoebess profile image
Phoebess

That wasn't disputed, but my specialist said it wouldn't raise my CRP ( it was 60 yesterday, 26 today) . Is my faith in them unjustified..... I really value your opinion and knowledge. ( I've to stay off it anyway until my liver enzymes return to normal parameters)

PMRpro profile image
PMRproAmbassador in reply toPhoebess

I doubt they can be that definite. Had you had a chesty cold? That can sent CRP into the stratosphere too.

Phoebess profile image
Phoebess in reply toPMRpro

Nothing to indicate any infection, although I did develop a fever and my crp went up

PMRpro profile image
PMRproAmbassador in reply toPhoebess

Inflammation does not necessarily mean infection - but it will raise CRP.

Hunter134 profile image
Hunter134

Sorry to hear about your issues Hope they get it sorted out real soon.Hugs to you❤️

emsscot profile image
emsscot

I’m so sorry to hear this. Sometimes it all just feels so overwhelming. Hang in there and huge hugs going your way 🤗🤗

ab58sf profile image
ab58sf

So sorry to hear about these side effects. Praying for healing. Is prednisone actually worse than all these other meds? I don't know, but have been on prednisone for a year now at low dose. However, a flair did make me go up in dosage. Trying to taper very slowly.

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