Comment

Comment by Debs on September 4, 2014 at 4:44pm

Polly, yes I had episcleritis diagnosed back in June. Used steroid drops in my eye for 28 days. I am seeing a medical herbalist now to get extra anti inflammatory herbs in a tincture. I am certain the FFA and episcleritis are linked as both are unflammation in the body and cause is unknown.

Comment by Meme on September 4, 2014 at 2:05pm

Hello Norfolk girl

 

I am in Suffolk so if you need a lift just let me know.

Comment by Annie on September 4, 2014 at 10:31am

Hi all,

I just wanted to update everyone.  I had my annual eye exam yesterday.  It's been 14 months since I started Plaquenil, and my eye doctor says he can see absolutely no adverse side effects to date.  I wish I could say positively that the Plaquenil is helping with the hair loss, but it's hard to know where I'd be if I weren't taking it.     

Comment by Polly UK on September 3, 2014 at 2:30pm

Hi C, I'd love to meet up again, I too find it helps talking to people who understand. However we're away for the last 2 weeks of September and in the middle of October so I may have to miss this time.
-------------------
I went to the eye clinic yesterday because I've had a pink/red eye for more than a month and now on Steroid eye drops and something to lower the pressure caused by the inflammation. I think Debs posted something similar a few weeks ago. I'm sure it's connected as I have recently been suffering spotty blotchy facial skin. I have been taking one Hydroxy instead of two for last 2 months because of the possible side effect of dark skin pigmentation and seeing derm next week to check if it's made any difference. It's definitely not as dark now - I look like I've washed my neck now;) and although my hair is still falling out I don't think it's receded further.
I've been enjoying the summer and tried to forget about FFA but the recent eye and skin problems have made me focus on it more.
I've been mainly gluten free since March and feel better for that and still taking turmeric extra, biotin, zinc, D3 and a multivitamin for the immune system.
I think a course of steroids would help me right now as I inhale them daily for asthma, snort it for rhinitis and blocked ears and now eye drops... does anyone else on here have those things in common?

Polly

Comment by Norfolk Girl on September 3, 2014 at 1:23pm

I'd be interested but it may be tricky from North Norfolk!

Comment by Meme on September 3, 2014 at 9:16am

Hello C

Yes I would love to meet up again, I found the last time very comforting to talk to others who instantly understood how I felt. 

Comment by Celia on September 3, 2014 at 9:14am

That's good thank you ladies - I will look at some dates and we will try to suit all as before - will pick 3 and hope for the best - I am trying to contact Caro but - no joy ! X

Comment by Jules UK on September 3, 2014 at 6:43am

Mush?? Sorry....

Comment by Jules UK on September 3, 2014 at 6:42am

Same here, Celia, thanks.

The survey goes live on the 8th Sept. It has been improved greatly since the first draft went out and feedback from everyone who completed that was instrumental in clarifying the wording and making it mush more succinct! I'll be something of a nag, I suspect, with regular postings to encourage our UK ladies to take part.... It's open until the 31st Oct.
At the last meeting of the steering group, there was someone with contacts withe media such as Vogue and other mags, as well as radio and press, who will aim to publicise the survey. Another member is a GP who will organise official NHS emails to UK wide surgeries with flyers to display. Everything has to be done along official lines because of ethics etc.
I have to work out how to open a discussion on this site to inform about it.
Debs, I wonder whether you would do a similar post on your wig support site, if you wouldn't mind?
Btw, house moves are BAD for hairloss!!
X

Comment by Catherine on September 3, 2014 at 5:55am

I would love to join you this time if I may? 

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