Time to get Ocaliva

[Cilgerran]

Does anyone have experience of how long it takes to get Ocaliva? I saw consultant on 12th December, he said I will be going on Ocaliva and will have a phone call from the drug company. I’ve heard nothing. I rang the specialist nurse and consultant secretary. All I get is they will chase it up. Thanks

[Hidden]

Hi Cilgerran,

Im in same boat,consultant told me 31st December he wanted me changed to it as urso know longer working the same. Still waiting. Keep me posted please

Angela xx

[Cilgerran in reply to Hidden]

Hi angel74 thanks for your reply. I will let you know when I get it. I suppose I just have to be patient. It’s just I had the impression it would happen quicker.

Niki xx

[Hidden in reply to Cilgerran]

I didnt know there would be an issue but i didn't know how expensive it is. Thats why it has to get approved individually via health board . Xx

[Hidden in reply to Cilgerran]

Maybe you need to keep on at them, sometimes it's the only way. Take care e

[Cilgerran in reply to Hidden]

Hi Angel, I just wanted you to know that a couple of weeks ago I had a letter dated the 31st January, from the consultant to say the Multi disciplinary team meeting had approved me having the Ocaliva. And today I took my first tablet. It was delivered to my house, after being rung by a company called Alcura to arrange delivery last week. So it took a total of about 8-9 weeks. I hope you get yours soon. Xx

[Hidden in reply to Cilgerran]

Thats good news, hopefully it helps. 😊 I need to chase up whats happening. Thanks for letting me know xx

[gwillistexas in reply to Cilgerran]

Glad you finally got it. Hope you do well and will soon see a positive in your labs. 😊

[Cilgerran in reply to gwillistexas]

Thank-you so much x

[gwillistexas in reply to Cilgerran]

😊

[Hidden in reply to Cilgerran]

Hi

Just off phone with consultant's secretary,she sent letter yesterday to GP to say health board has approved so should get first prescription soon. How are you doing on it so far ? xx

[gwillistexas]

I’m not sure where you are or if you’re able to get Ocaliva from your pharmacy or if it will be sent you by UPS/Fed Ex. My dr sent his form in to Interconnect Services, maybe toward end of August 2017. Then interconnectServices faced a form for me to fill out, which was faxed to my office. After that, it took about a week or so for them to approve. So I’m thinking I finally received Ocaliva the end of September or very early October. It was quite a process. Mine is sent from S Dakota by UPS.

[Cilgerran in reply to gwillistexas]

Thank-you for your reply. I live in the UK and it has to be approved by the health board I’m under as it’s so expensive. But I was told there wouldn’t be a problem, and would have it after Christmas/New Year.

X

[gwillistexas in reply to Cilgerran]

Yes, very expensive. I’m in the states. Without drug insurance, it costs around $7,000 a month. No one can afford that.

[Cilgerran in reply to gwillistexas]

Wow

[gwillistexas in reply to Cilgerran]

I just looked the cost up by using Good Rx...$7,904😳. Ridiculous

[Cilgerran in reply to gwillistexas]

😯That is a ridiculous price

[funkyfreester]

Hi,

I have been on Ocalvia for about 6 months now, it took about 6 weeks from seeing the consultant to getting my prescription.

Due to it being so expensive it had to be approved by the Liver Pharmacists at Kings College Hispital.

Now the prescription is delivered to me directly from the drug company.

Good luck, hope you dont have to wait to long.

[Cilgerran in reply to funkyfreester]

Thank-you so much. I’ve been trying to get a time scale from the specialist nurse, with no response. If I know it’s going to take 6 weeks or so, I can relax. Xx

[Cilgerran in reply to funkyfreester]

Thank you, that’s reassuring. I hope you are doing well on it.

[funkyfreester in reply to Cilgerran]

I see my liver specialist mid March, so will see results for the last 3 months fingers crossed.

I have been lucky and have experienced no bad side effects.

Good luck xx

[dtol]

I’m in the UK - Mine took ages, firstly it had to be signed off by the health trust. As part of this, my consultant had to make a case and submit it to the trust. Then once it was approved the pharmacy at the hospital had to set up an account with the drug company as no one else is prescribed it in my hospital trust which took a few weeks. And then when they realised the cost, the very head of pharmacy across the whole trust had to sign off on the purchase because no one else in the pharmacy section had authority to deal with the cost involved. So in all, probably about 3 months to get the trust to approve it from the consultant submitting the case and 6 weeks to set up the account & paperwork in the pharmacy department once my prescription was submitted to them. However, we had tried several other medications first and had been discussing whether or not to try obeticholic acid for maybe a year before the ball started rolling. In this year they upped my monitoring from annually to quarterly thus they had a stronger case to get the medication signed off. Hope that helps

[Cilgerran in reply to dtol]

Thank you for your story. There seem to be a lot of hoops to get through. I’ve not responded to the urso after a year and the consultant wants to try Ocaliva for at least 6 months.

[gwillistexas in reply to Cilgerran]

It’s worth a try. I’ve done well with ocaliva and no side effects. The nice thing is you can take with or without food. I take mine at noon every day.

[JaneEyre55]

I had to get special authorization from the insurance company since I was prescribed the drug shortly after it was approved by the FDA. Needless to say I've been on it awhile now and have great results, no side effects at all

[Cilgerran in reply to JaneEyre55]

That’s fantastic that you have responded and with no side effects. I hope it works for me 😊

[MysticShaman]

Ocaliva is listed as a specialty drug and as such, requires addtl paperwork and it’s still in trial phase (3 I think). I’m in my 2nd year of taking it and my alt counts, while still abnormal, have come down significantly enough to warrant coverage. When I started taking it, the cost was a bit over $10,000/month😟 I can only get a 30 day supply and have to fill out a questionnaire online ea time it’s refilled (data is being tracked by the pharmaceutical company & FDA). Be patient, it’ll go through as there’s no alternative drug at this time.

[gwillistexas in reply to MysticShaman]

I get 30 day supply also. But paperwork only is filled out once a year and dr has to sign stating Ocaliva is medically necessary for me. My Rep emails me each month when I have about 2 weeks supply left and tells me she is placing the order for the next month. It is delivered UPS next day, to my office.

[MysticShaman]

My doctor only has to submit Rx specialty request yearly as well. I receive a refill email from specialty pharmacy 2wks out, but there’s the questions on any changes (ie new Rx’s, side effects, questions for pharmacists) to fill out online.

[hettie01]

Hi... my consultant tried to get me on it for about 6 months..sending E-mails etc to Kings hospital..I then received a letter to attend a appointment with the professor in kings...I ended up doing a clinical trial for 4 months on another medication but unfortunately it didn’t improve my bloods...(but pleased I could help with the research) then I was approved for octaliva I had my first 3 months supply delivered from kings but now they use a company to deliver it which they phone to arrange with me... so far I’m having no problem taking it. My bloods have come down abit but still pretty high but I’m hopeful in time they will improve... my understanding is because of the cost drs/consultants can’t give you them.

[Cilgerran]

Thank-you all for your replies and reassurance. It was the first time I had posted anything. Today 18th February I took my first Ocaliva tablet. It’s taken from the 12th December to get it, for anyone else in the same boat. Xx