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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Hi Paul. 

I live in Glasgow Scotland and I too am considering Xeljanz.  There have been some very encouraging and positive threads from Frida and Nicole. However both live in the states.  Ben and Mariemcd comment on the forum and  are in the U.K. and using xeljanz.  My understanding is it can’t be prescribed in the Uk.  I contacted a dermatologist I had dealings with a number of years ago and she refused point blank to get involved  and advised against my taking it 

it can be obtained from India cheaply but issues with supply - importing it.  I am reluctant to take it without bloods being monitored for side effect and I would be interested in your GPs view and if you are successful in getting a GP I would discuss with mine 

Hey magmck,

Thanks for your reply, I'll certainly keep you updated. 

Did your dermatologist refuse point blank because she couldn't get involved or because she wouldn't? I'm trying to figure out if it's at a GP's discretion...

It can't be prescribed as it hasn't been approved for treatment of alopecia, but I'm wondering if legally, could be prescribed off-label?

All the best,

Paul.

Hi paul 

glad you’re commenting on this thread. It’s came at such a good time for me.  I need to find some good research about xeljanz and print off for my GP. I would be very grateful if you could let me know how you get on with monitoring your blood 

Thank you 

Paul. 

Ive copies the response from the dermatologist below.  I hope you get a different response 

 

Dear

I am responding to your recent email to the dermatology service.

 

As you may know, JAKI do not as yet have a licence anywhere in world for use in the treatment of alopecia areata. As with many drugs, they also carry the possibility of causing serious side effects.

 

I`m afraid neither myself nor your GP could condone the purchase and use of prescription-only drugs, particularly unlicensed ones. Undertaking monitoring of drugs, the use of which we are advising against, could also put us in a difficult position medicolegally.

 

I would therefore strongly advise against purchasing these treatments yourself.

 

Yours sincerely

 

Thanks for that.

I'd ask her if GPs and/or derms can prescribe it off-label.

If you know that's a possibility, she may still not be willing to do it, but at least it'd be a possibility if you found another willing GP (if it were legal after all).

I'd be very very wary about taking it without medical supervision. Are you considering it without a GP?

Hi. No I wouldn’t take it without medical supervision 

I feel the same. So I guess your main question is can they monitor you or won't they monitor you. If you can figure that out you'll know where you can go from there :-) Best of luck with it! I'll keep you updated on how I go and keep me posted too!

Somewhere on the xeljanz forum I read a post from a contributor that they were getting their monthly blood tested and monitored by a UK Blood analysis company and this company informs them of the medical status of the blood results. The cost was £120-£130. This seems like a viable alternative to a GP supervision and still keeps within the term “medically supervised” . It was about 2 months ago the forum post was left. 

Thanks bibby! I'll dig around and have a look.

I'm in Ireland so hoping they'd have a branch here in Dublin.

All the best,

Paul.

Hi Bibby that’s helpful to me too in the U.K.  it would be good to have a GP on board in cad blood results need to be interpreted/understood.  I have a GP appt next Friday and will ask for blood screening to serve as a health MOT. I think I may have thyroid issues which wouldn’t be surprising given the link to immunity. Im intending to ask about the possibility of ongoing screening in the event of me taking xeljanz - it’s the possibility of clotting that worries me more than anything as I’m 52.  Perhaps if I wrote a disclaimer that would satisfy the GP :-/

Hi magmck 

ill try and locate the blood screening service over the threads this wknd. It’ll give you an additional option if you are going to embark on xeljanz treatment. Since you are UK based I assume your dermatologist is in the UK. I can tell you now that they are going to refuse any part or acknowledge xeljanz existence when treating hair loss. It’s medically cleared for arthritis and psoriasis treatment only. I’ve yet to hear of any European GP or dermatologist prescribing it to patients with alopecia. That leaves only Turkey or India supply (otherwise very costly supply) and secondary blood service monitors. 

Hi again

i found that post. It came from user “mind over matter” , this individual is using xeljanz without medical assistance from their GP or dermatologist. They are using https://www.citydoc.org.uk to monitor their blood on a regular basis. It may be something worth considering your end if you are Uk or Ireland based. 

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