Found a US PBC Support Group

[SmileSun69]

Hi all, i am recently diagnosed with PBC, with overlapping Autoimmune Hepatitis, & Celiac Disease since (2008). Met with new Specialists yesterday in the Houston Texas Medical Center. Here is another website for you. pbcers.org I will be reading up on them this week. I also know for those who do not respond to taking Ursodiol / Actigall pills for PBC, there is a NEW drug being released in May 2016. I asked for the name but of course did not get it... just a smile from drs.

PBC is maintainable/controllable with proper meds and treatment.

Thanks

Theresa

[LisaC22]

Hi Theresa. I believe (but you should double check this in case I am wrong) the new drug you are thinking of is Obeticholic Acid. If you search on this site you will probably find other posts.

[SmileSun69 in reply to LisaC22]

Hi there. I researched that drug. Its still in phase 3 of clinical trials and won't be completed until 2018. Don't think it can be used until trials are completed. Thanks for that information.

[Karaliz in reply to SmileSun69]

Hi Lisa and SmileSun. I am part of the Obeticholic Acid trial and have been taking it for 3 years - 1 year on placebo and 2 years on active drug. Due to the extremely positive results thus far, doctors are hoping to fast track it and make it available, possibly even within a year. There is an article about this fast tracking which I will try and find.

Karaliz

[Karaliz]

FDA Grants Priority Review for Intercept's Obeticholic Acid for the Treatment of Primary Biliary Cirrhosis

ir.interceptpharma.com/releasedetail.cfm?ReleaseID=929359

Hope this works...might have to copy and paste.

Karaliz

[Juamcc]

Please let us know about the new medication my prescription for ursa cost $215 per month and with other cost I'll be in the donut hole by June.

Do any of you know if I can request a prescription to be placed in my hand so I can buy it wherever I want to?

[SmileSun69 in reply to Juamcc]

Why is your cost so expensive? You should be able to get a script in hand since its not a controlled substance. Not sure about out of the USA rules for those drugs. Here in the states thats easily a hand in script.

[Juamcc]

I am in the USA . I have secured an appointment with another Dr. But not until May 25. Meanwhile I'mean feeling good: no itching,no fatigue, no edema. Has anyone (PBCER) been taken off ursodiol? No one mentions the new high cost. Has anyone ever cut their dosage or had the Dr reduce it when there was no weight change?

[SmileSun69 in reply to Juamcc]

Curious if you have insurance?  I only pay $10 for my Ursodiol medication with insurance for a month supply.

[Juamcc in reply to SmileSun69]

I only have Medicare what kind of insurance do you have?

[SmileSun69 in reply to Juamcc]

United Healthcare POS. 

Wow! Cant believe with Medicare you have to pay that much. Are they trying to give you name brand and not generic? 

[chynablue]

Here's my story, in case it helps:

My dog is actually on Ursodiol for liver issues and gallbladder sludge.  Yes, my dog and I are on the same medication.  My pharmacist thinks it is hilarious.  Any way...

Obviously, my dog has no insurance.  I went to my pharmacy to fill the prescription for the first time (in the US), and the pharmacist said they did not have it in stock but a nearby location had it in stock.  He said I could wait a few days while they order it, or I could go to the other store.  I decided to go to the other store.  Before I left, he warned me that Ursodiol was very expensive without insurance, about $225.  I said, oh no!  Is there anything I can do?  And he said, no that's the price.  Sorry.

So, I went to the pharmacy nearby that actually had the Ursodiol in stock.  The pharmacist said, oops!  It looks like this medication is very expensive.  I told her, oh no!  It's for my dog, so clearly I don't have insurance to cover it.  I have to pay cash.  She said, let me try a few things.  She was able to apply a discount program called Welldyne to the cost and now I pay $24.09 a month without insurance.  This is for one 300mg capsule per day.

The first pharmacist did not even try to get the price down.  But there is a way to do it.  Shop around, be super nice, and you might find a competent pharmacist that can help you out.  Maybe they can figure out how to do the Welldyne discount for you. 

[Juamcc]

I'm going to look 4 Welldyne

 right now! Thanks for the advice.

[chynablue in reply to Juamcc]

I tried to look up Welldyne, and did not find much useful information on the internet.  Let us know if you find anything helpful.  I had to get the pharmacist to apply the discount directly when I was standing there in person.  I never even signed up for anything, so I don't even know what she did!

Good luck Juamcc

[SmileSun69]

Juamcc, there are prescription cards all over that assit with the cost of drugs for those who don't have insurance. When i get to work tomorrow I'll add a photo of the card and see if its something you can look up online.

Theresa