Lost on the medical system

[Evaibrahim60]

Hi everyone. I didn’t write posts for a long time, may be I have nothing to say! May be you know from before or not that 17 years ago I was diagnosed with autoimmune hepatitis/ PBC. After using Ursofalk for 15 years developed allergic reaction for me and body rejected it. Back to my gastrointestinal doctor who referred me to a younger one who he said knows better than him. I was put on colistrol (not sure about spelling) medication which didn’t work. No with different hep doctor and on process of redignosed. Wouldn’t know much before 23/10. However was hospitalised for pneumonia and an eco showed fluid on the lung, filling better now and I hope that I get the all clear soon. Hope everyone doing well and enjoying the weekend.

[Ktltel]

Hello,

Boy, you have been through it. Nice to meet you. You've have PBC a long time. That's encouraging to us newbies although I've been diagnosed since 2016. So sorry about the Pneumonia. I hope you are recovering uneventfully and quickly. ❤

How are you feeling PBC wise. You say you've been off URSO? Just wondering what they're doing for that side of things.

And even though you may feel like you have nothing to share on this forum, trust me when I say that whenever anyone shares their experiences with the rest of us, especially ones who are enduring a long time with this disease, we are listening, we are interested! 😊 (How's that for a runaway sentence.)

Stella❤

[Evaibrahim60 in reply to Ktltel]

Only the little to sometimes strong pain on the right side just under the ribs! I had this while on Ursofalk as well so there is no difference except for the little elevation on the liver blood test, which always been there. Just waiting for new diagnosis! Thanks for replying Stella 🌷🌷🌷

[AliceYZ]

Thanks for posting! it is helpful to hear from people who have been living with PBC for years. Sorry about the pneumonia. I was diagnosed 8 months ago with PBC/Autoimmune Hep Overlap. Seems the time for me has flown by with getting meds adjusted and changing to healthier diet. Curious if you have seen a lot of changes in treatments offered and medicines over the years? I had an allergic reaction to Imuran and it was horrible. Hope you continue to gain strength and recuperate well.

[Evaibrahim60 in reply to AliceYZ]

Hi Alice it’s good to hear that you doing well. As for me there wasn’t much change in medication first 15 years with Ursofalk, then horrible rashes developed all over my body. I have asked my doctor from the beginning of getting this rashes if anything do with Ursofalk but he said no, I tryied to stop other medications and vitamins for other problems I have but it wasn’t confirmed that was the Ursofalk till I stopped it last January. Then I was put on clisrol medication which done nothing. That was all about liver treatment or no treatment at all!

[AliceYZ in reply to Evaibrahim60]

Hope you get better results and information with new doctor. Let us know if you are re-diagnosed?