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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Permalink Reply by Michael Fisc on May 24, 2019 at 9:06am

You shoudl also try here:) 

Permalink Reply by magmck on May 25, 2019 at 4:05pm

hi Micheal

 I couldn’t get your link there 

Permalink Reply by Natalie on June 1, 2019 at 2:57pm

Hi All

I am in the UK, I attempted to book an appointment with Dr Caitriona Ryan last week and was told she is not accepting any new appointments until February next year !! What a shame.

However I was made aware of a Dr Nicola Ralph who works with Dr Ryan so I will be contacting her.

Regards

Natalie

Permalink Reply by bibby on June 1, 2019 at 5:38pm

Wow. Let’s see how you get on with dr Ralph. If this fails I am seriously considering a trip to the USA to find a doctor that will monitor remotely (while sourcing xeljanz in India from beacon pharmacy) 

Permalink Reply by bibby on June 2, 2019 at 8:17am

Bad news. I just checked doctor Ralph’s profile , she was mentored by a dermatologist that 100% refused xeljanz to me after I made a pitch perfect plea regarding the treatments merits and effectiveness on alopecia areata etc. That honestly bodes negativity towards her being receptive to the idea of innovation or off label treatments. I could be wrong but unlikely. 

Permalink Reply by magmck on June 2, 2019 at 3:04pm

Hi Bibby. 

I emailed Dr Ryan’s practice and outlined I was looking for Tofacitinib for alopecia and the secretary /practice nurse advised that in some instances De Ralph will prescribe Tofacitinib for alopecia.  What makes you think she will refuse?

Im waiting on blood results to come back from my GP and if ( hopefully ) there are no issues my next step is ordering Tofacitinib from Beacon and requesting that my GP monitors my bloods should I decide to take Tofacitinib .  I think inwould prefer howeto have a doctor who understands the drug and the impact on alopecia, could advise on dosage and might decide to contact the doctor in Dublin first. Mariemcd posted on this thread and apparently her doctor decided to monitor her bloods and I’m going to try to contact her to ask info on her GP as perhaps if my GP is aware that other GPs are monitoring bloods he might be more inclined to consider it... so couple of options moving forward 

Permalink Reply by bibby on June 2, 2019 at 5:35pm

Hi Magmck. I too have ordered from beacon. 10 boxes. All I need is someone to monitor me. After the email you received it does sound more positive. I will be following your lead and ringing them up Tuesday for clarity. Thanks for the tips on the gps , it does appear there will be options to monitor somewhere. Cheers for now 

Permalink Reply by magmck on July 31, 2019 at 5:38am

Hi Natalie. How are you getting on! I’ve had a I’ll think about it response from my GP Re blood monitoring and don’t think he will. No clue how to progress this if he does refuse.  My precious dermatologist refused and emailed my GP 

have you had any success ? Feels like progress in this area in the UK is a million years away 

Permalink Reply by magmck on September 10, 2019 at 2:53pm

Hi 

How are people here getting on ? Ive found a

London based Dermatologist and my GP has agreed

to refer  me and she is seeing me as an NHS patient and my GP has agreed

to monitor  my bloods. So progress at last ! So let’s see what happens now that I’m taking xeljanz ! :-) 

Permalink Reply by Natalie on September 12, 2019 at 3:24pm

Hi Magmck

Apologies for the delayed response. 

I am not getting on very well. Still unable to find a London based Dermatologist to support me. I read that you have found a Dermatologist to support you whilst taking Xeljanx, would be good to have their details if you don't mind please.

Also there is an event taking place at Wimpole St, W1 on 22nd September 2019 called Get Ahead of Hair Loss 2019. apparently it's an opportunity to get all the latest in hair loss and treatments. I will be attending. Fingers crossed.

Regards

Natalie

Permalink Reply by magmck on September 12, 2019 at 4:50pm

Hi Natalie.  

Send me a wee message and

we can chat x

Permalink Reply by magmck on September 13, 2019 at 2:44pm

Natalie.

My GP has agreed to refer me to Dr Sarita Singh at Chelsea and Westminster Hospital in London.  There is a long waiting time (4 months +) to be see as aNHS patient.  She has agreed to see me and  Following on from the referral will provide guidance to my GP re blood monitoring and as a result he has agreed to to monitor my bloods.  You can enquire st the email address below - 

pa@singhdermatology.com

pkease let me know how you get on 

x

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