Glimmer trial : Has anyone been on the... - PBC Foundation

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Glimmer trial

Lilbear89 profile image
7 Replies

Has anyone been on the Glimmer trial in Queen Elizabeth hospital Birmingham? If so what is it like and how did you find it? I'm starting this week on the 25th and am getting really nervous and anxious.

Hope you all are well.

Lots of love

Xxx

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Lilbear89 profile image
Lilbear89
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7 Replies
Rozm2004 profile image
Rozm2004

Hi

Is this the one for itchy skin ?

Roz xxx

Lilbear89 profile image
Lilbear89 in reply toRozm2004

Yes it is

Thanks for replying.

Tasha xxx

Melwoods profile image
Melwoods in reply toLilbear89

Yes I started it 2 weeks ago

Nothing to worry about at all staff are amazing and you get a mini medical every time you go!

I may be taken out of it as my billirubin has increased on the day I started the meds ( nothing to do with the meds☺️

They have strict protocol

I take 4 tabs in the morning and 2 at night

Have a e dairy which you fill in morning and night on a phone

This week I have had to wear wrist watches at night to growth how much I’m disturbed

I’m the past week I have got 1,5 hours sleep as the itch has been horrific

Let me know how you get on

I have tried everything the itch had destroyed me and taken away my life

I hope you get some relief from on it x

GrittyReads profile image
GrittyReads in reply toMelwoods

Just want to say 'Thank you' for doing this test, so as to possibly help everyone who has the dreaded itch.

I'm okay, but I'm always shocked by people who can't be bothered to do these sorts of things. So just a big 'Thank You' and an imaginary 'hug' to say thanks, for all those who are suffering.

Here's hoping something comes of it and you get some relief.

Thinking of you,

Gritty xx

EileenUSA profile image
EileenUSA in reply toGrittyReads

Yes Gritty, you are SO RIGHT. Thank you to those who take part in trials that might find hope for all of us. Godspeed.

Melwoods profile image
Melwoods

How you getting on.

Lilbear89 profile image
Lilbear89

Going okay, got some feedback to give when I see them in 2 weeks odd. Finding I'm getting really bad dry skin. Other than that itch does seem to be getting less which has been great.

How you doing?

Thanks for checking up. :)

Big hugs

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