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Comment by Pam on June 18, 2013 at 2:46am

Yes I am the Pam from the UK and a new member!
In reply to Liz, my dermatologist based in Bristol was reluctant to prescribe oral steroids, as he said the side effects were too great. He gave me a topical steroid cream, Synalar, to use at the front of my scalp around the affected area. I do not really think that it has been very effective though, as the hair is still receding, and the scalp looks shiny.
Any advice from other members welcome as to where to go for a good hair top piece in the UK?
Also, has anyone tried cover up masking products such as couvre, or toppik? What is their feedback?

Comment by PamW San Diego, CA, USA on June 17, 2013 at 11:18pm

Maddi, did you get to meet Dr. Goh? What did she say? Try to hang in there. Tomorrow will be better. Your symptoms sound like there is more going on with you. Could you be diabetic or have thyroid problems?

Welcome to Pam... I think this might get confusing. I am PamW. I think you should look into a topper. It just clips on and blends with your hair.

Liz, I think you could buy some pretty nice wigs for that money, but I know the feeling of wanting to try everything.

I think for all of us our biggest fear is having to wear hair. Deb is so brave and has just embraced wearing hair. Deb, are you calmer now knowing that you can pull it off?

Question for the group - does anyone get really, really red cheeks on their bad days?

Comment by Liz on June 17, 2013 at 4:39pm

Hi Rebecca. I was prescribed oral steroids for 8 weeks because I was losing my hair at quite some speed.
Last Thursday I was prescribed some medication by the dermatologist and have since found out that it's going to cost me £200 every 6 months. To be honest from what I read on here I wonder if medication does any good at all. We all seem to continue losing our hair, despite pumping our bodies full of drugs. The fact that we have this condition in the first place suggests to me that we all have sensitivities to something. If we then pump strong medications in to our body, I wonder if we are doing more harm than good to a system that is already struggling. Perhaps we are all grasping at straws , because it's better to take medication and live in hope than to give in and see what happens. If we are all going to wear wigs eventually why take the medication anyway? Sorry if I'm being controversial but this is how I feel at the moment.

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.!!

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