Saraloujay
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  • Liverpool
  • United Kingdom
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  • NicoleT
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Saraloujay's Discussions

Inspiration to start my journey on JAKS!

Started this discussion. Last reply by magmck Sep 20, 2019. 18 Replies

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…Continue

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magmck replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Sep 20, 2019
magmck replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"Hi Sarah.  Yes. I’ve started taking them and my GP has agreed to monitor my bloods fingers  crossed for us both :-) "
Sep 20, 2019
Saraloujay replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Sep 13, 2019
Saraloujay liked Frida Rupert's profile
Sep 11, 2019
Saraloujay and singh are now friends
Sep 11, 2019
Saraloujay replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Sep 11, 2019
y yules replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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 "
Sep 11, 2019
magmck replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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 ! "
Sep 10, 2019
magmck replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Aug 22, 2019
Saraloujay replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Aug 22, 2019
magmck replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Aug 20, 2019
Saraloujay replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Aug 18, 2019
magmck replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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 :-) "
Jun 26, 2019
Saraloujay replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Jun 24, 2019
Saraloujay is now friends with magmck and bibby
Jun 24, 2019
Saraloujay replied to Saraloujay's discussion Inspiration to start my journey on JAKS!
"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…"
Jun 24, 2019

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