I'm getting weird dull aches under my ribs on the right side. I read that liver doesnt have nerves so you cant get pain from it. Is that true? Could the ache be my inflamed liver pushing against my ribs or damage like fibrosis from inside my liver.
I'm sorry to bother you with it but you all seem to have a wealth of personal experience & I value what you say. Been getting very anxious about it 😳
I'm on 15mg of Prednisolone. Will that reduce the inflamation or block my AIH?
I've been getting really puffy eye bags with pred. Has anyone else had this? Is it normal?
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Bigbluemonkey
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You are correct in stating that the liver has no pain receptors so in effect you can not suffer from liver pain. However, the liver is contained in a membrane called the Glisson's Capsule which does have pain receptors - when the liver inside is inflamed and possibly enlarged then it can cause this membrane to stretch which some people do describe as leading to pain in the liver area. A very enlarged liver can also as you say press on other organs.
Prednisolone steroid's job is to bring down your liver inflammation (in AIH circles it is described as a fire extinguisher, being used to put out the blaze that is onging liver inflammation). At high doses it also has an immune suppressant effect so starts the job of getting your immune system in check.
As the prednisolone brings down the inflammation and numbers return more towards normal they should taper your prednisolone to get it down to the barest minimal dose (or even off it altogether) and thats when they introduce the immune suppressant meds. I note that you've already tried Azathioprine and it didn't agree with you and doctor is talking about introducing 6MP (Mercaptopurine).
Again going back to the fire analogy, the immune suppressant will act like a sprinkler to keep putting a dampener on the smouldering fire to stop it re-igniting. Your immune system has gone into hyperdrive and is failing to recognize your own body parts - in the case of AIH it has turned it's attention on and is attacking your liver cells. The immune suppressant is to calm the immune system back down to a normal level to stop it attacking your own cells.
High dose steroids can cause all manner of side effects including puffy face, puffy eyes so this could well be to do with your pred (though if you are concerned you could ask your doctor). How are you sleeping? High dose pred can also cause sleep difficulties and tiredness can also add to those bags under the eyes.
Just to check - have you also been prescribed a PPI (Omeprazole/Lansoprazole) to protect your stomach lining from the effects of Prednisolone? AND have you been prescribe a Calcium/Vit D supplement (such as ADCAL D3) to supplement your calcium - prednisolone can contribute to calcium stripping/bone/jaw and teeth problems and potenially even Osteopenia/Osteoporosis. If not then you might want to ask your doctor about these.
I don't know if you do Facebook at all but there is an amazing Facebook AIH support group with well over 3000 members now, members world wide, admin are all fellow AIH patients and they are supported by some of the top doctors in the UK who are working in the field of AIH treatment and AIH research. You'll find a great welcome on there and there are certainly others who have had DILI - Drug Induced AIH and now a few with Covid induced AIH too. Find us at:- facebook.com/groups/AIHorgUK
Thank you. You've told me more than the consultant. Very reassuring to have it all explained clearly.
I was started on 60mg of pred & was tapered down to 10mg with the idea of starting azathiprine & then stopping pred but because I couldnt tolerate it I've gone back up to 15mg & cant start 6mp until I've seen new consultant.
The puffy eyes I think might be the moon face thing. I've put on a stone & a half in 2 months. I remember Dynamo the magician had same problem when he took pred for crohn's. I get enough sleep.
With the liver ache I'm just trying to assess where I might be in terms of damage & if it can be repaired just to prepare myself. Its the not knowing that's stressing me out. Hopefully in 6 months or so I'll now & by then I'll be settled on meds .
Immune suppressants don't cause cancer but they can make you more susceptible to things like skin cancers so there is guidance on keeping yourself safe in the sun, highest factor sun protection, hats etc.
I am no expert on 6 mp but there are several members on the AIH page I mentioned who are on the same medication & they'd be able to share their experiences better than I. (My hubby isn't on an immune suppressant because they have deemed his AIH burned out - he has not active ongoing inflammation)
Glad you are on a stomach protector, my hubby is Omeprazole daily plus he is prescribed 2 x Adcal D3 tablets daily (each is 1500mg).
Have you had a DEXA scan to check your bone density? being on the steroid long term can lead to osteopenia/osteoporosis so it's usual to have a scan at the start of treatment and then monitor every 5 years.
My awful current consultant, which I'm hopefully swapping, said 'azathioprine makes you feel sickly & steroids can affect your bones & if you get a sore throat see your GP'. Thats all he told me. I've only been on them since October 14th 2021 so not too long. But I'll see GP about high strength calcium & vit d (ADCAL D3 )
When I see new consultant, who looks really good, I can ask about a scan.
You've been amazingly informative & a real help. I was nervous about posting on here but you seem like really good people👍🙂
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