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 Saraloujay on September 13, 2019 at 4:32pm

Hi Margaret,

I will definitely keep an eye out for them.. in the meantime though I think we should all move forward with our own journeys.

Although I have lost all hair on my head and just noticed a patch on my eyebrow, I am determined to forge ahead and self fund my own treatment on JAKs.

Just seen on the tracking system that my first order has today been released from customs so hopefully they will delivered soon - so not bad given they were ordered on 28/08.

Off to get my baseline bloods done and will speak to Dr Cohen when I see him at the end of the month.. I got the impression that he was keen to get as much info as possible from folks who are wanting to start on this treatment.. he's a Doc and a researcher so he was quite excited to hear that some of us who have suffered with AA/AU are willing to self-fund.

Hope your London goes well .. have you ordered your pills already?

Cheers,

Sara

Permalink Reply by magmck on September 20, 2019 at 4:46pm

Hi Sarah. 

Yes. I’ve started taking them and my GP has agreed to monitor my bloods

fingers  crossed for us both :-) 

Permalink Reply by magmck on September 10, 2019 at 2:42pm

Hi. How are you getting on ?

clinical trials are beginning in Glasgow. I’ve found a dermatologist in London and my GP is referring me and has agreed to monitor my blood with her support.  Progress ! Hurrah ! 

Permalink Reply by y yules on September 11, 2019 at 2:20am

hi magmck

i am in London and was wondering if you could share your London dermatologist details. Would be amazing if you can Dm me 

many thanks 

Permalink Reply by Saraloujay on September 11, 2019 at 5:26pm

Hi.. That's great news!.. so pleased that you have GP support and a dermatologist referral. I know its always a case of one step at a time but that's a huge leap!

I am about to get my baseline bloods done by my GP as expecting the pills to arrive any day now. I ordered from Beacon on 28/08 and tracked them as they left Dhaka airport, they got to Coventry on 04/09 and have been held there for inspection ever since.. been advised that this is quite normal but I am keen to get my mits on them and get started so am checking the EMS tracking every day :-)

Hopefully it wont be too long - I have an appt wit my Dermatologist for the end of Sept when he will take a 2nd blood test so really wanted to be on the pills for over a week by then.

I haven't seen any info re the clinical trials in Glasgow - if you have a link to this could you ping it across.. interested in any new developments.

So made up for you that you have got a referral through.. fingers crossed that we are both starting treatment soon! 

Permalink Reply by magmck on September 20, 2019 at 4:53pm

Hi Sara Lou. 

Best of luck.  I don’t know if the trials are common knowledge yet.  I think Pfizer are trialling in 3 centres throughout the U.K.   I’m waiting on my GP to refer me to dermatologist and keen to get blood tests soon as I’ve started the medication :-)

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