Inspiration to start my journey on JAKS!

What a wonderful inspiration your story is NicoleT.. having suffered from AA for nearly 2 years now and gone through the usual topical treatments, steroid tablets and now methotrexate to no avail, I am currently searching for JAKS inhibitors trials in the UK. Our National Health Service, which I cant praise enough, just isn't swift enough to respond to new treatments.. like a huge cruise liner it takes too much time to turn!.. So I have decided to self-fund and look to purchase the drugs you mention from abroad. My GP has said he will support me with blood tests etc and I see my Derm.specialist in August so will be telling him what I have decided to do and hopefully he too will prove supportive... I'll be sure to look back over your posts for the contact info for Beacon Pharmaceuticals.. excited but also wary about getting my hopes up :-) but your story and pics give me hope!

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Permalink Reply by magmck on June 20, 2019 at 1:28pm

Hi Saraloujay. 

Im waiting on Tofacitinib from Beacon and once

i receive them will contact My GP to

ask if he will monitor my bloods.   It woukd

be good for me to tell him there are other people who’s doctors are doing f the same. Where in the U.K. are

you ? 

Permalink Reply by Saraloujay on June 21, 2019 at 9:52am

Hi Bibby,

I'm in Southport, near Liverpool/ Manchester in the Northwest. Great to hear that you too are starting on this journey and spookily enough one of the things my GP suggested was to try to find a dermatologist in the UK that would support a group of us fellow AA/AU sufferers as we self-fund our own treatment.

My GP explained that he was almost duty-bound to support me with taking my bloods as a baseline before I started treatment and then to monitor me as I progressed.. he said "I am saddened that I cant prescribe for you but more than happy to help if you tell me that you are going ahead on your own :-)"

Whereabouts in the Uk are you and how have you found UK support/ treatments so far?

Sara

Permalink Reply by bibby on June 21, 2019 at 7:09pm

Hi Sara, 10 boxes of xeljanz beacon pharmacy arrived in my office in Northern Ireland today. I am Dublin based resident myself working in Northern Ireland. I’ve yet to meet find GP or dermatologist support. I’m due a complete routine blood test this coming Tuesday and will go ahead and start on half the recommended dose 1 pill daily. I’ll have all the info such as liver function, cholesterol etc as a baseline. I would really appreciate if you could pm me your GP details in southport as they could monitor my lab results remotely following a consultation and red flag me on my treatment journey of any concerns etc. Traveling to the UK is not a problem for me. Hoping to hear from you soon. Thanks 

Permalink Reply by magmck on June 23, 2019 at 6:11pm

Hi Sara. 

I think you, Libby and I are at the same stage.  I’ve ordered from Beacon and. Once I receive the Tofacitinib I will contact my GP to ask if he will monitor my blood.  I would also like to discuss with him whether he would prescribe predisinone as some people seem to have results when combining the two. I’m not sure that he will agree as  I emailed my dermatologist and she was strongly against becoming involved I. Her response and may have contacted my GP re her views.  It would be really helpful for me to give some information to my GP re other sympathetic GPs in the U.K. willing to prescribe.  Would you mind messaging me with info ?

many thanks

Permalink Reply by Saraloujay on June 24, 2019 at 3:51pm

Hi magmk

great to know we are all at the same stage - I am about to visit my Dermatologist at Broad Green Hospital (Dr Cohen) to see if he will look to support me (& others maybe..) with this treatment - he has been looking for UK trials but hasn't found anything yet.. or if he can recommend a specialist who would be willing to.. I know there is a Dermatologist at Royal Liverpool who is specialising in Alopecia for children. I am afraid my GP only supports those who live in his catchment area.. he is a great GP (from Australia) but I did make a note that I had told him I was going to do this on my own, which he made a note of, so he could almost be let off the hook - he said "if you are going ahead then there is nothing I can do to stop you but I would have to support you with regular blood tests etc.". I have found a lab in Warrington to send a sample of the tablets of to and as long as everything comes back OK then I'll go ahead. In all honesty, you could present to your GP and say you have started on the pills and I am almost sure that they can't refuse you at point of service.

I hope this helps and as soon as I get my batch through and tested, I'll be sure to let you know the results.. I will speak to Mr Cohen and let him know that I have found another x2 people who are looking to move forward with this treatment and see what he says.

Cheers,

Sara

Permalink Reply by bibby on June 20, 2019 at 5:47pm

Due to receive my beacon supplied batch tomorrow at my Uk address. 300 pills. Going to ease in an take 1 pill per day for the first 2 weeks and slowly increase. Its great to have a forum to share experience and support our journey to hopeful recovery 

Permalink Reply by Saraloujay on June 24, 2019 at 4:07pm

So if there are no UK trials then why not try to get a small (but perfectly formed) sample of us supported by a UK dermatologist who specialises in AA/AU.. I have found a doc who practices out of west Yorkshire so I have sent him an email to see if he would be interested in following our progress/ supporting us and maybe reporting on our results (fingers crossed\). His biog says he has an interest in this are so lets see if he comes back to me.. nothing ventured..

https://www.spirehealthcare.com/consultant-profiles/dr-david-fairhu...

S x

Permalink Reply by magmck on June 26, 2019 at 8:20am

Hi Sarah 

i would be interested in that! However spite health care as far as I know if a private set up and not NHS and may not see this as being part of their remit. However I’m interested to hear what they think :-) 

Permalink Reply by Saraloujay on August 18, 2019 at 4:21pm

Hi all,

Back from summer hols and just had a great appt. with my dermatologist... wasn't sure which way it would go when I mentioned that I had given up on the mycophenolate he was prescribing and wanted to start on Tofacitinib but it couldn't have gone better.. he is v.excited about me self-funding and seemed almost relieved that I have made this choice! So he is going to speak to his colleagues in Rheumatology as this drug is prescribed in the UK for R. Arthritis so he can get his head around any expected side effects, he will write to my GP so they can monitor my bloods etc. in conjunction with each other and he has asked if he can conduct some personal research off the back of my journey.. couldn't be a better outcome as I genuinely thought he would be slightly reticent about the whole thing.

So I am about to transfer funds for 6months worth across to Beacon Medicare who are the UK partners for Beacon Pharm and once I have the initial batch tested at a local lab, I will get my baseline bloods done and I am all set.. excited and hopeful.

How are you getting along Magmck? Hope all is well for you also.. did the pills come across OK? Feel free to let him know that I am being supported by both my GP and my dermatologist at Liverpool Broad Green Hospital.. hope this helps!

Will update once I get the pills across and send for testing of reactive agent.. fingers crossed!

Sara x

Permalink Reply by magmck on August 20, 2019 at 5:20pm

Hi Sarah.

I thought I’d responded to this!  Such good news ! Am very pleased for you. Sounds like you have a very good dermatologist ;-). I’m not feeling too confident about mine.   Apparently Pfizer will be enrolling for large scale clinical trials for Tofacitinib throughout U.K. .... I wonder if some dermatologists are aware of it ? 

Coukd i ask - would you mind PM me your dermatologists details as I think I might get in touch in the event of my dermatologist refusing to support me.  

Thank you !

Permalink Reply by Saraloujay on August 22, 2019 at 3:00pm

Hi Magmck,

I have been looking out for Pfizer's trials in the UK but haven't come across them yet so will keep an eye out.

I would be more than happy to share my dermatologists info.. I am meeting with him to start me off on the pills shortly so will be sure to ask if he is ok with that.. 

Where about in the UK are you? Surely (if NHS) your dermatologist should support you even if this isn't something they can prescribe via the NICE guidelines for you?

Cheers,

Sara

Permalink Reply by magmck on August 22, 2019 at 3:47pm

Hi Sara. 

Thanks for asking your dermatologist. I appreciate it. I think,Southampton are gathering info for a clinical trial and October seems to be the time frame for this beginning.   I had a conversation with someone there and she advised that other trials should be carried out in other parts of the UK.  I live in Glasgow 

thanks. 

Margaret 

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