Comment

Comment by Debs on June 15, 2013 at 7:26am

Caroline, I hope your father is as comfortable as possible at this time. Lots of love to you and your family.

Paula, thanks for letting us all know what Sir David Fenton has prescribed to you and I think it is definately viable that some of us can meet him in London.

Comment by Rita - Canada on June 14, 2013 at 1:26pm

Hello all, Unfortunately, I have mild hypertension and have been taking 40mg of Micardis for several years. I have FFA so it is clearly not helping this scenario. Perhaps a higher dose is required but I can't imagine doing so as B/P will then be lowered to an unacceptable reading. All these drugs that are mentioned seem to add more problems. I wish there was a natural approach, Yes, I know, dream on.!!

Comment by Rita - Canada on June 14, 2013 at 1:23pm

Comment by Paula uk on June 14, 2013 at 12:42pm

Hi all,
Had an appointment with Dr.Fenton this week and also celebrated my 50th birthday!
I have now got a prescription for 40 day course of Prednisolone starting with 40mg and reducing 5mg every 5 days this will be my second course of Prednisolone also hydroxychlorquine 200mg (first time to take it.)Once I have liver/ renal test and eye test.He also suggested that I double my intake of Ferrograd c iron tablets as he is not happy with serum ferritin level below 70.
I have an inflamed scalp so he would like me to continue with Etrivex shampoo each morning and elocon scalp lotion daily.
I did mention to him about this lovely group - if we happen to meet up in London he said he would gladly meet up with us too.
Have a good weekend,x

Caro - thinking of you and your family at this sad time .x

Comment by Caro UK on June 14, 2013 at 8:43am

Hello everyone. First time I've had a chance to post anything or even read your recent posts. My father is terminally ill and has deteriorated rapidly in the past two weeks. I have been helping to care for him. It really puts things in perspective re my hair loss. I'm carrying onb taking Planquenil and using Dermocvate scalp lotion every other day which is the treatment my derm prescribed. Howevedr, my scalp is still inflammed. I am very pleased with the eyebrow tattooing I had done recently. For anyone who is concerned about having it done, I'd say Go for it, but make sure you do to a very experienced practitioner. It has improved my appearance a lot and even better, I no longer have to worry about applying eyebrow pencil. Saves a lot of time!
Great to hear that there is to be more research into Lichen Planopilaris and FFA.

Comment by Debs on June 14, 2013 at 3:46am

Liz, thanks very much for your info. I really feel that the trigger for FFA is something in the environment that we are all in contact with, like your derm says insecticides or something similar. Liz, I nearly fell of my chair when I read your post... I didn't know my vulva needed to be included in a study of FFA... Good grief what next... I hope this is just the ladies with lichen planopilaris... The fact that so many women are now presenting with FFA is very sad however the upside for us is it is being seen as a condition worthy of study so lets hope we can get a more treatment options soon.

Hydroxychloroquine sulphate - I have been taking 2 pills a day since 6 March and the sides of my hair and temples have stayed the same but more front hairline has continued to shed hair. I see Dr Harries on 12 July. I know this drug takes a few months to get into your system so I am giving up all hope but it is interesting that Liz's derm has said doxycycline is a prefered treatment option if tolerated.

Comment by Celia on June 13, 2013 at 5:45pm

Hi Heidi - no repeat prescription - unless I go into London and have another expensive consultation !

Comment by Celia on June 13, 2013 at 5:40pm

Sorry - just reread what you said and you have tried minoxidil (in Regaine ?)

Comment by Heidi Short UK on June 13, 2013 at 5:40pm

Hi all
Celia_ I used Philip Kingsley products about a year ago but it was just the shampoo,conditioner and tonic not the 3M drops. I got mine online but Charlie works in a salon who stock some PK products so you could try a local salon, but I don't expect they could prescribe! Sorry I'm not much help! If you have already been to their clinic can't they give you a repeat persciption!
Jane you sound like you have had a nightmare! I wish you well, your luck must change soon!x

Comment by Celia on June 13, 2013 at 5:39pm

Liz - are you going to try the doxycycline again - I stopped because I started getting a rash on my face. I am taking hydroxychloroquine now and am losing more hair than before - confusing to say the least - have you tried Rogaine ? x

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