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Comment by Maddy, California, U.S. on June 17, 2013 at 4:10pm

Hi Everyone, Well, I am still really struggling with the latest flare-up of this alopecia. I don't know if it is still going or not. I was put on the topical steroid, Clobetasol, and have been using that for two weeks, but over the last week, I have had a horrible feeling of fatigue (I have absolutely no energy...very unlike me), light-headedness, dry eyes/sort of blurring, some stomach issues and even some minor shortness of breath when exerting myself. Basically, I just feel horrible almost all of the time and just want to lay down and nap (which I can't since I'm trying to work). I just spoke to Dr. Strick in Santa Monica (who prescribed it) and he says no way could it be causing these symptoms. Anyway, I was wondering if anyone on here has had any side effects from topical steroids? Maybe it's depression, but I don't know...

Comment by Pam on June 17, 2013 at 3:53pm

Can anyone recommend the best type of wig for frontal fibrosing alopecia? I need something to cover the sides and top, but have got hair at the back of my head.
Feel pretty depressed about the whole situation! Am getting increasingly self-conscious about windy days and people staring at me!
Also what is the view on eyebrows? Mine have vanished. Is it worth trying a tattoo?

Comment by Debs on June 17, 2013 at 1:15pm

Rebecca, 'no' my hairloss is not as fast as this. Is your derm certain this is FFA and not something else? It is very distressing for you to lose hair at this fast rate. I just wonder if this is a reaction to medication you have been prescribed because some of these meds for hairloss bizarrely can have hairloss as a possible side effect. I am very sorry you are having this experience. XXX

Comment by Debs on June 17, 2013 at 1:11pm

HYDROXYCHLOQUINE SULPHATE AND EYESIGHT.

I have been wearing reading glasses for 4 years. I have not had an eye test since September 2009. I went to an eye test today as recently I have experienced eye strain whilst reading and because this drug can on rare occasions affect eyesight I wanted to get it checked out.

I went to Vision Express where I had my previous eye test. I do need a stronger prescription for reading - but this is only a normal amount of change that would be expected over a 4 year period. I said I was on this drug and they knew exactly what the side effects could be and were very considerate. I was given an excellent eye exam and told to come back in a year rather than the usual advice of every 2 years to get a check up. I was told that it is very rare for the drug to effect sight and I was advised to do the AMSLER RECORDING CHART eye test on myself at home every 2 weeks as a way of keeping a careful check on my vision. I was given a print out of the test but you can print a copy out and have instructions on what to do

www.garetina.com/amsler-recording-chart

I am really impressed with the care I was given when I disclosed my use of this drug and the thorough eye exam optometrist gave me. It has definately given me peace of mind.

Comment by Celia on June 15, 2013 at 2:14pm

Carol - that was funny about the onion juice - I'll try it on my husband first - he has a good head of hair.................

We ladies in the south east should meet up again soon I hope.

And for the west country ladies also , please - I would love to host another get together in the Autumn. I know it was a mission for Caroline and Heidi as well as Julie to get over here - but - we shall see..... Liz - I hope to meet too soon. Hope all is going well for you.

Today I caught sight of myself on the car window as I was getting in - what a shiny pate !!!!!!!!on the forehead !

I wonder if I might ask if you haven't done so already - please add where you are from / continent / or a bit more specific if in UK after your name eg London/ MC - whatever - I find it quite helpful. Thank you - I hope you don't mind me asking. x

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.

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