Where acceptance is all there is
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 for the details I will make contact.
Hey magmck and Natalie,
I'm sorry to hear that you're having trouble finding dermatologists willing to prescribe.
I found one in Dublin and am on Xeljanz for 7 weeks now, but that's all covered as I'm an Irish resident/citizen, otherwise it'd be nearly 3000 EUR per month.
All I'd say to you is this - if I found one in Ireland, you'll totally find one in the UK.
Here's a few ideas:
- Ask your GP for a directory of dermatologists across the UK - I'm sure GPs have catalogues of specialists.
- Google around for UK dermatologists who specialise in alopecia. Contact each and every one of them.
- Google UK-based dermatologists who have worked on trials with Xeljanz. Because they've worked with it, the fear of prescribing it won't be as daunting, as they understand the drug, have seen its safety profile first hand, and might be more inclined to prescribe (as is the case with my derm, far as I can tell).
- Often this comes down to fear of being sued as the drug's currently unlicensed for alopecia. Maybe there's some sort of waiver that you could offer to sign, where the derm feels assured that you'll never sue them for any associated health risks/problems.
- Start a new thread and replicate the title of this one but change it to UK. That's how I found my derm - through very helpful and good people on here :)
I never thought I'd any hope of finding someone either. 7 weeks in and I'm feeling totally fine. Small bit of fatigue in mornings and waiting on first blood results since starting, and regrowth started this week. Keep up the search guys I promise that it'll pay off!
Thank you so much for taking the time to reply. Hopefully Natalie has read my reply and as you can see. I’ve started taking xeljanz also ... just in the last few days. It will be probably 4 months before I get the opportunity to meet De Singh and meantime I will need to have my blood monitored I think or my anxiety levels will go through the roof. There is a good Facebook page xeljanz and alopecia and is encourage you to join if you haven’t already. Someone on the site is self medicating as I am and have me the details for the Dermatologist in London. How exciting for you to have so regrowth so early on! What dose are you on ?
Have started taking 15 mg from beacon - 1 pill in the morning. And 2 at night. I also have topical minoxidil which I have also started using in conjunction.
Pleased for you that you are responding and no reason whatsoever that you won’t carry ont o full regrowth. Best of luck !:-)
Would you be able to share doctor name who prescribed you Xeljanz in Dublin?