PBC and Autoimmune Hepatitis

[Q8Cooper]

Diagnosed with PBC 2012 last biopsy 3yrs ago stage 2. Labs not improving over the years dispite using Urso and Ocaliva combined. Now trying steroids and bone marrow suppressants incase I have autoimmune hepatitis. My Alt and Ast stabalized but still have elevated alk phos. Any body out there with both PBC and Auto-immune hepatitis? What treatment/meds. are you trying?

[Hidden]

Hi

Don’t you mean immune suppressants? Not bone marrow suppressants?

There are a few of us on here with PBC/AIH overlap syndrome (formal name for it , I think).

DONT panic! We all feel overwhelmed at times, it’s natural and initial response is to panic . Medication is normally steroids to reduce the inflammation, high dose to start, then reduced gradually with the hope of stopping it all together. The other medication is an immune suppressant (I’m on azathioprine), which does what it says , suppressing the immune system to try and stop it attacking the liver. I stopped taking steroids nearly 2 years ago now and on 100mg of azathioprine, I like you also take Urso and ocaliva.

Honestly , don’t panic, I know you feel scared and most likely unwell but on the positive, you are now being treated. Take care xx

[Q8Cooper in reply to Hidden]

Hi Angel 46,Thanks for your response. Yes, I am on azathioprine 50mg this month. My doctor says my labs are stable so the steroid Budesonide is is being cut back from 3mg to two mg and if all goes well I will be weaned off steroids. I guess I am confusing immune suppressant with bone marrow suppressant? I thought that if it worked on the white blood cells made in the bone marrow that made it a bone marrow suppressant? Oh boy, I am confused.

So here is the next question. My Alk Phos stubbornly remains 190+ where the norm at my lab is a number below 135. Have you been able to pull your Alk Phos in particular as well as your ALT and AST into the norm?

I noticed a study of Benzofibrates used with Urso non complete responders getting good results. Have you heard anything about this? And do you know about any new and upcoming treatments.

Not so much worried about the disease process as much as I am looking for confirmation from others on the same medication regime that my doctor is up to date on medications used for PBC/AIH.

I really appreciate your time taken to reply. I have been off this site for a while and I am really out of date.

Stay well and God Bless!

[Hidden in reply to Q8Cooper]

3mg is quite a low dose so it shouldn’t take long to ween off . When I was on them I started on 45mg a day, I was really quite poorly at the time.Your lfts sound really good , so it sounds like things are getting under control. They say that the aim is to get our alp under 200 with the acceptance that it may not get to the normal numbers for someone with the disease. I was diagnosed nearly 8 years ago and only now have they managed to get mine below 300 after adding in ocaliva last year . I don’t concentrate too much on my numbers , I know if the doctors are concerned then they will adjust medication as needed. I am just happy that I am going to 3 monthly bloods after getting them done monthly /fortnightly for years, I hate getting my bloods taken 🤢.

I think there are some members taking Benzofibrates, I have no knowledge on it so maybe they can advise.

You mention about your doctor and medication, all my liver medication has went through my consultant. Any other medication I get for other issues has to be checked and if any query then they have to contact him for advise .

Xx

[Q8Cooper in reply to Hidden]

Wow! That's a lot of steroid and then again mine might have been a tiny amount. Thanks for all the information especially that the general goal is to get Alk Phos below 200. Reassures me I am doing ok when my doc gets frustrated he can't get me in the normal range. Good information to have.Thanks!

[Hidden in reply to Q8Cooper]

Your welcome.We are all here to help and support one another . I read once that for AIH the steroid dosage could be as high as 60mg a day , it all depends on how inflamed the liver is (I think) . X

[danaLL in reply to Hidden]

i started on 60 mg 2 and 1/2 years ago and i am now down to 5. My numbers starting going up after my steroids were as low as 2.5 mg, and then they took them up to 7.5 but now down to 5 again. I think it is because of the manufacturer change in my azathioprine as my numbers started going up when i noticed the shape of those pills changed. I realized the old generic I was taking was discontinued. We may have great docs but stay on top of your health as I think this was the issue and there was no reason to raise my steroids. If i continue to do well, i get off the steroids and hopefully lower or get off entirely of the azathioprine. good luck everyone, I have to remind myself, it's a marathon, not a sprint!

[Rimeru in reply to Q8Cooper]

Hi Q8Cooper you replied to my recent post about itch! I saw your comment on Benzofibrates and my mother before she was on Ocaliva was taking Fenofibrates with Ursodiol and at first it worked well with her but in a month or so her kidneys started to hurt so she was taken off of it.

[TOMOLLIE]

Hi I asked my consultant to let me try Bezefibrate and urso combination before giving oclaliva a try ..I was non responder to urso. All liver enzymes normalised in 4 weeks! Am monitoring with blood work every 6 to 8 weeks now and so far still good. Maybe ask your consultant about this? Good luck and do let me know how you get on 😊

[Q8Cooper in reply to TOMOLLIE]

Thanks for the info!

[TOMOLLIE]

Meant to say i have 1000g urso and 400g Bezefibrate!

[positivethoughts03]

Hi Q8Cooper and everyone - It is nice to know there are more overlap people out there! I have never met anyone in person even to have PBC or AIH never mind both.I agree with the "don't panic" advice. I was diagnosed almost 2 years ago and have come a long way since. I was on steroids for about about 10 months but eventually off them. I know my doctor has said to me a couple of times it sometimes takes many months for new or adjusted meds to really do what they doctors hope for. So, be patient and be consistent about taking them on time etc.

I am currently on 125 mg Azathioprine . And just lowered me to 750 URSO tablets (from 900 capsule because my insurance copay went so high this year but the tablets are way cheaper but only come in 250mg so he had to drop me to 750 so I could save money. So far so good with my blood numbers.)My biggest issue now is that I've been dealing with ocular herpes (not the std kind lol) for the past few months. I was just informed that I'll be on Valtrex for 6+months to keep the damn virus away. I had no idea herpes of the eye was even possible!! Being on immune suppressant drug does not help when other issues arise...ugh.

Oh, well that is life. Positive thoughts is all we can have and just keep moving forward!

Be well everyone XO

[Q8Cooper in reply to positivethoughts03]

Thanks for the info!

[JaneAnderson1966]

Hi

Initially diagnosed with PBC about 5 years ago and last year AIH added to this diagnosis after 5 bouts of hepatitis. I am partial responder to URSO but ALK Phos remained stubbornly high (1300 recently). Put on Azathioprine but had adverse reaction and had to have platelet transfusion and been taken off it. Also cannot take budesenoid. Currently on 20 mg of Pred and URSO and Alk Phos now reduced from 1300 to 280. Currently suffering from side effects of pred and hoping to reduce steroids soon. I do qualify for Ocaliva so this is perhaps my next step to stabilise. I am due an consultation with my specialist at QMC Nottingham.

Hope this info is useful.