Budenofalk

[katim]

Hello everybody, I recently visited my doctor and seems that things are not going well ...she said that my body didn't react very good by Ursofalk and she decided to add a new medicine, named Budenofalk! Is anybody here who is taking this medicine and how is working? As far as I know is something from cortison class but with better side effects than others... I'm very depressted because by fibroscan, I'm already F4... Thank you in advance for any answer, God bless all of us!

Kati

[kimphoebe]

Hi Katim can I ask what was your fibroscan score which put you at an f4.

[katim in reply to kimphoebe]

Hi, she didn't tell me...but I saw 28 Kpa

[kimphoebe]

Sorry can't help you with your post never heard of that medication. Hope everything gets better for you. Try not to worry to much I'm sure someone else will help with your question. Xx

[katim]

Thanks a lot! Send you a big hug from Romania

[Andrei in reply to katim]

Morning.I am also from Romania.Urso is the only treatment for pbc and now ocaliva in combination with urso for pbc.F4 is bad.It is very important to reach a dr from Fundeni because only there u can make transplant.After f4 u should think about that very serious

[katim in reply to Andrei]

Thanks Andrei, unfortunately, Ocaliva is not yet in Romania...Regarding transplant.. it' correct...I already think about it...but I hate Fundeni hospital....My doc is from Sfanta Maria hospital and they are also involved in liver transplant... Do you have same problems: PBC?

[Andrei in reply to katim]

I have elevated ast &alt and ama positive.No alp or ggt yet but i am under supervation at Sanador for Pbc.On 18 i will go to see what happend after 3 months treatment with urso/lagosa &spirulin.If treatment didn t work i must do biops.At fibromax i have 15% fibrosis but increased inflamation.

My doctor think that i have incipient Pbc.

About Fundeni : i also hate it.My father died from multiple mieloma and was treated in Fundeni........But they have the experience in that kind of transplant.I think they are the best.For now i am going at Sanador.I think when i will be F4 i will move to Fundeni for treatment.......Meanwhile , best of luck

[Andrei in reply to Andrei]

About transplant.U must go under 75 kg if u want to really make that transplant.Under 75 u can use half of liver from living donner.After 75 u must wait for your turn .Somebody must die for you to get his liver.I know that the list is sooo long....Take care

[katim in reply to Andrei]

thanks a lot! I let here my phone no...if you want to talk sometimes, feel free to call me, 0725516644. All the best for you.

[Oidra]

Email the PBC Foundation. They have the specialist knowledge and would be the best people to answer

your question.

[katim in reply to Oidra]

Thanks a lot, dear Oidra! Is this the right e-mail address: [e-mail] ?

[Oidra in reply to katim]

Yes. You can also join the PBC Foundation , it is free, and they will send you up to date information on PBC.

[katim in reply to Oidra]

I'm already member of PBC Foundation....

[Betonarme]

I think there is a budesonide inside now without looking at google......budesonide is good at PBC ......but I've also read that in advanced cases should cautiosly taken.....I would ask again your doctor...Best Wishes

[Rockie]

Katim. How long were you on Ursofalk?. I am asking, because for years I was on Ursotan and then switched to Ursofalk (Medical Aid pays for Ursofalk, refused to fund Ursotan and it is very costly) I itched like never before and have been diagnosed since 2009 with PBC. I just tried and let my body get used to the new meds., After a month I can say it is getting better. Have to go for blood tests next week and will then see whether it is giving the same results as Ursotan. My last readings were best ever. Reason for that also because I cut out all gluten,fat, no alcohol .

[katim in reply to Rockie]

Thanks for the reply, since December 2015 when they put the diagnosis for the first time... Lately, my doctor told me that for sure the disease is present from long time ago (7-8 years) but I didn't know... Until this August, the usual dose was 750 mg/day, from to September I take 1000 mg/day. My weight is 61 kg

[Andrei]

Budenofalk is used in some cases in autoimune hepat (aih) so maybe u also have overlap syndrome :aih and pbc

[katim]

It is not sure this diagnosis (AIH)...still waiting for results (ANA ASMA LKM1)

[Andrei]

Yes.The anti nuclear markers.I only have Ama for now