Off-Label Tofacitinib in Ireland?

Hey,

I'm based in Ireland and am hoping to order tofacitinib from overseas soon, as the price is horrendous here.

However, I'm wondering how it would work getting a prescription/medical supervision while I take it.

Is it within my doctor's rights to prescribe me tofacitinib off-label? Tofacitinib is only approved in Ireland for treatment of arthritis at the moment, but I'm wondering how the whole off-label part works...

Thanks guys!

Paul.

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AW:  Other discussions on Tofacitinib

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Permalink Reply by magmck on May 21, 2019 at 12:19pm

Hi paul. 

I’ve done a little more research and unfortunately it would seem that blood screening companies suggested won’t Screen if taking xeljanz and gps refuse as it’s off label. I’m feeling a bit despondent as I couldn’t take it without my blood being monitored given the possibility of side effects. 

Permalink Reply by hellopeesha on May 21, 2019 at 4:52pm

Hey macmck,

Don't feel despondent - it'll come right! Just keep having a patience with all of this.

What was the reasoning for the company not testing your blood if you're on Xeljanx? How is it that the other user bibby (thanks bibby! ) was referring to could get the test? 

You can't stop looking. Also, shouldn't you be able to get the tests done under a general health check?

Reach out any time, feel free to message me, but keep faith - you'll beat it! :)

Paul.

Permalink Reply by magmck on May 23, 2019 at 5:12pm

Aaw - what a nice supportive forum in the midst of the madness 

Permalink Reply by bibby on May 22, 2019 at 6:56am

Agree with Paul. I’m based in Ireland myself. I’m doing this back to front really as I’ve no clear medical plan as of yet.. I’ve ordered from beacon pharmacy 10 boxes. I’ll go either 2 routes once the meds arrive. 1 , I’ll get my bloods tested and watch for iron increase/ cholesterol increase/ kidney and liver function results and carry on based on periodical 6 week bloods which I’ll get tested from a local GP. Otherwise 2, I’ll go to Northern Ireland and have the bloods tested within the UK region of multiple blood screening companies stipulating to them that I need the results tailored to someone who is being treated for rheumatoid arthritis treatment and to red flag me if anything needs to be reported. (Again every 6 weeks) . The 2nd option will certainly be the most expensive one but seems more certain. Planning on starting at 1 pill per day for 3 weeks and 2 pills there after for 16 week period. This is being viewed as an experiment. 

Permalink Reply by Dublinbooks on May 23, 2019 at 7:57am

Hey. I live in ireland and just started Tofacitinib with Dr Catriona Ryan in Dublin. She prescribes it after blood tests are cleared. I'm 3 weeks in on 10mg per day with no side effects. Under the 'Drugs Payment Scheme' (free to all Irish taxpayers) they cap all medication at €124/month. So its no-brainer. Give her a call. Colin

Permalink Reply by hellopeesha on May 23, 2019 at 1:01pm

Hey Colin.

Is the tofacitinib for alopecia and not arthritis?

I think you've made my day Haha

Is she in Blackrock Clinic?

Keep us posted on your progress! 

All the best,

Paul.

Permalink Reply by Dublinbooks on May 24, 2019 at 7:49am

Hi Paul.

Yes it's for arthritis but can also be given for Alopecia and Dr Ryan is comfortable issuing a prescription. She's had a lot of success (I'm told) in regrowth. She's based in Morehampton Road. Best of luck. 

Colin

Permalink Reply by hellopeesha on May 24, 2019 at 8:39am

Thanks Colin. Would you mind messaging me her web site or contact details? I'm getting multiple Catriona Ryan's in Dublin when I search...

Permalink Reply by bibby on June 1, 2019 at 6:17am

Hi Colin . Thanks very much for the info and the link. It’s a god send for a lot of sufferers in Ireland. Can you tell me did you have to wait long for an appointment to see doctor Ryan ? (Can’t ring myself today as it’s Saturday) thanks in advance . 

Permalink Reply by magmck on May 25, 2019 at 4:04pm

Hi Dublinbooks

So pleased for you ! That’s great news. How amazing a dermatologist prescribing Tofacitinib for alopecia off licence. . Maybe there’s  more relaxed licensing in Eire than the U.K?  I’m wishing I had Irish nationality at the moment! . I’ve arranged for an initial blood screening on Friday which will hopefully come back clear and from there will return to my GP to discuss blood screening   This

pathway does rely on importing drugs from Beacon however which seems a bit difficult and they don’t seem great at replying. I think I’ll contact Catriona Ryan re whether she knows any GPs in Scotland who would prescribe or monitor blood or whether she could take me on as a patient.  However I imagine that as a non Irish person it may be very expensive 

Interesting times and nice to feel slightly optimistic for the first time in a long

time

Permalink Reply by hellopeesha on May 30, 2019 at 6:52pm

Hey magmck,

I think your GP is the best person to talk to. Ask them to help you locate open-minded dermatologists as you've spoken to others who are being prescribed in different parts of Europe and emphasise that you've exhausted all other options.

If your GP isn't game with that, get a new GP. And keep going until your GP is on your side. That's what I did until I found one who was willing to fight my corner, and he's fantastic.

Keep going! You'll get there!

Paul.

Permalink Reply by Dublinbooks on May 24, 2019 at 8:41am

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