Comment

Comment by sammi on December 31, 2013 at 2:48pm

Happy new year to all!love and best wishes Sammi x If anyone wants to meet up in Manchester let me know, maybe for a coffee after or before appointment if travelling to see Dr Harries x

Comment by MJ on December 31, 2013 at 1:06pm

Pauline,
Have you been told how long you will be staying on hydroxy and has it been working for your ffa after two years? I just started a couple of weeks ago. By the way, you look fantastic in your picture. Was it taken before your hair loss? Your hair looks great! Would never know you lost an inch.
Marla

Comment by Celia on December 31, 2013 at 1:01pm

How is your hair loss now, Brenda.

I went for my hair do today - I used to so enjoy visits to the hairdresser - fortunately they are very caring and made a nice job of it for me.  I can go a bit longer before the wig plunge I think.

Anyway - Happy New Year to all of you.

I would like to plan a day here for the UK dwellers in Jan as we have done a couple of times before. It would be nice to see you all. x

Comment by Brenda, IL US on December 31, 2013 at 11:25am

I had severe joint pain.  My Dr. said it was from lupus.  Hydroxychloroquine has helped immensely.  I tried to quit taking it because i thought it was the reason i was loosing my hair.  My joint pain got a lot worse and my hair still kept falling out so i resumed taking it.

Comment by Celia on December 30, 2013 at 5:16pm

Thank you Annie for your reply.  I will go and see my GP I think and see what he suggests.  Perhaaps the different things I've been doing lately have triggered this situation.  The weather certainly doesn't help - this dampness really seems to get to me.  Sorry to moan !!

Comment by Annie on December 30, 2013 at 5:07pm

Celia, I'm sorry you're experiencing joint pain.  I wish I could offer you some advice, but the hydroxychloroquine seems to have helped my aches & pains.  My knees have hurt whenever there's a change in the weather as long as I can remember.  I've been taking hydroxychloroquine for almost six months, and  now have very little knee pain.  I do, however, experience pain in my hands when I do a lot of tedious work such as wrapping gifts, decorating cookies, sewing, etc...  I have some joint pain right now in the joints that connect my thumbs to the rest of my hand because of the extra work preparing for Christmas.

Comment by Celia on December 30, 2013 at 4:53pm

I wonder if any of you are experiencing any kind of joint pain.  I certainly am - this has been noticeable for about a month now but has worsened lately.  I understand that arthritis is an autoimmune inflammatory disease and that one of the drugs used to manage this is hydroxychloroquine..............................

The other day someone shook my hand - a rather too firm handshake and I cried out - it was soooooo painful !  I have researched (as one does) on the internet and one of the tests for rheumatiod arthritis is squeezing the hand or foot - if this is unduly painful then that may be an indicator.  Has anyone got a view on this or any experience, please ? x

Comment by ElleMN, USA on December 27, 2013 at 5:09pm

Thanks Debs!

Comment by Annie on December 27, 2013 at 2:40pm

I was just looking at how many have signed up on this website.  It's now at 117.  I was the 50th member to sign up in late March, 2013.  I don't believe this disease is nearly as rare as doctors think.  I think there are a lot of women who don't have any physical pain, and just accept the hairline recession as part of the aging process. 

Comment by Debs on December 27, 2013 at 12:30pm

Ellen I bought mine for just £24, i use it on my face too as an anti ageing treatment, you can use it any where on your body. The 0.5mm needle is suitable for our faces/scalp, you only use it 2/3 times a week, I run mine over my face, the skin where I have lost hair and into my hairline for about 3cm. I think it is worth trying as a non drug option. It compliments any of our drug options. It will encourage collagen production and does stimulate a healing response of course as with other options it will work for some people and not others I know my hair loss stopped in my brows and eyelashes after they were tattooed because of this effect.

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