My alopecia journey, The tests and process


 Hi


So I have been getting a lot of messages asking about the process and tests you need to be able to start Litfulo. 

Here is my story. 

I have been with dermatology for over 10 years for both alopecia and eczema. 

Last year when I heard about the treatment I emailed my dermatologist and was put on the list, she advised me it was still waiting approval from National Institute for Health and Care Excellence (NICE) in my local area (Derbyshire) and I was put on the waiting list in April 2024. 

I never thought it would actually happen but on 26/112024 I got a letter with an appointment for 05/03/2024. 

I couldn’t wait. 

I was unsure what the initial tests would involve but as a nurse I looked it up and knew I needed bloods and x-rays. 

The day of the appointment came and I was so excited. I only had to wait 5 minutes and was taken into a room where my height, weight and blood pressure was taken. They also took numerous blood tests for  TB, hepatitis, ALC (blood sugars), liver enzymes (LFT) platelet, immunisations and CPK (creatine phosphokinase). Be prepared for a lot of vials to be taken and don’t be scared it’s for your own benefit. 

Unfortunately for me there was a problem with the bottles at the hospital I went to and on the 07/03/2025 I received a call stating due to a manufacturing error one of the tests needed to be repeated. I was lucky as I know my consultant works at my local hospital on Fridays so instead of having to go back into the main town hospital I was able to have my blood tests done locally. I had the repeat tests on the Friday and had a tense weekend thinking maybe they needed to repeat the test as something was wrong however on the Monday morning I got the message below. 


Morning

I have checked all your bloods and they are fine. I have sent your prescription off today.

JO

Monday, Mar 10, 2025 8:04 AM


I was advised it would take up to 3 weeks however I got a call later that day and was told I could have me delivery on the Wednesday 12/03/2025. 

The drugs arrived early (before 8am) but for once I was happy to be woken up. Started that day and now keeping this blog to share my story. Still excited, apprehensive but hopeful. After all these years I dare to dream 

Love and hugs xxxx


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