Biopsy results

[Louisethew]

Finally got to see hep dr for liver biopsy results , it confirmed pbc but also found autoimmune hepatitis and signs of fibrosis. Dr has upped urso to correct dose for my weight and prescribed steroids and vit d , blood tests needed , dexa scan and fibro scan also needed dr said he will be seeing me often till he's happy with bloods . Not the answer I wanted but am hoping the steroids knock the awful muscle pains on the head , if not I'm back on the waiting list for rheumatoid clinic

[hettie01]

Hi...was it your Dr or consultant who prescribed steroids? When my Dr wanted to give me steroids my consultant said no and wrote to my doctor to tell him by giving me steroids it would damage the liver more... When I had injections in my back for nerve damage I had non steroid injections x

[Louisethew in reply to hettie01]

Consultant prescribed steroids it's the only treatment for autoimmune hepatitis

[hettie01 in reply to Louisethew]

Hi... Oh I see hopefully it will work for you... X

[Carolebroadbent]

Hi Hettie.

I had a biopsy in July because my consultant wasn't happy with the results of my bloods . She put me on 1000mg of urso instead of 750mg to see if it would help. But after trying the higher dosage for 6 months made no difference. My bloods are back to where I was 4 years ago when first diagnosed. My biopsy showed signs of fibrosis. But nothing to worry about. My consultant as decided to try a new med. I am seeing another consultant to see if I qualify for it ,because it is very expensive. But she said the urso is obviously not working for me. I have an appointment for 1st March . Fingers crossed. Good luck for you x

[PollyO]

Okay you guys here is something to think about...

I have been diagnosed for three years or more with PBC and recently I have had my first "attack" from the auto immune...it attacked my oil glands above my eyes. Had I not had an MS friend I may not have recognised it or considered that my own stress may have brought it on.

I had two surgeries back to back...one was shoulder and the other my routine varises procedure. I was also selling my Mother's home at the time. So, my point is I am beginning to think all auto immune diseases are kind of like herding pigs (you can't herd a pig really) when it comes to western medicine. My feelings are that WE are in control of progression, severity and side effects simply by managing stress.

In my view from my own recent experience stress is the number one enemy and perhaps the cause. That might explain why all auto immune diseases primarily affect women...we are the bearer of day to day stress as we are the organizers and planners of family life.

Let's all go on a campaign of managing stress and I am betting things will improve for all of us. Deal?

[Lizzy1313 in reply to PollyO]

Deal. I completely agree that stress makes things much worse. So challenging to manage, though. Especially the external kind. I'm working on my internal stressors...

[JaneAnderson1966]

Hi, I have recently been diagnosed with PBC/AIH overlap and put on similar meds to you. From day one, the meds made me much more energetic and immediately cured a 'frozen shoulder' pain that I had had for several months. In addition, the dreaded itch has been significantly reduced. Some dramatic reductions in blood results from week 1 also. Hopefully you will benefit in a similar way. Good luck and take care!

Jane

[Louisethew in reply to JaneAnderson1966]

Thank you day 3 on steroids and pain has gone way down just a little niggle here and there so fingers crossed 😄more energy but less sleep 🙄I'm lucky as not suffering from the itch , got to wait for consultant appointment for bloods in 3 weeks . On the down side still struggling to get travel insurance as waiting for dexa scan and fibro scan , holiday to Greece booked for August and USA in October so definitely need insurance 😵😬. Hope you stay well x

[JaneAnderson1966 in reply to Louisethew]

Are you taking your steroids in the morning? I take all mine with breakfast - told to do this by my GI. Hope you get your travel insurance sorted. Keep me updated on how things are going.

Jane

[Louisethew in reply to JaneAnderson1966]

Hi Jane yes I take them in the morning, have had predisolone before for asthma but only a 7 day course , I'm on 8 a day for 2 weeks , then 7 a day for 1 week then 6 a day for 2 weeks by which time I will have seen consultant again . Struggling to sleep ( had problems sleeping all night before meds 🙄) did nap in the cinema this morning though ! Have more energy, getting some of me missed chores done so I suppose that's a bonus . Have you asked about future? I was too shocked to ask both my consultant and myself thought the biopsy would come back as fatty liver , he was much nicer and less condescending when he had to tell me liver was not fatty ( don't prejudge the overweight patient! ) and that it was aih as he had previously dismissed my concerns ( and the rheumatologist)that it was aih . Take it by your "name" that we both might be the same age 😄

[JaneAnderson1966]

Think I have sent a post meant for you on the public forum. Just to let you know I take all my steroids in morning with breakfast as I was advised to do this by my GI.