Comment

Comment by Kath UK on June 23, 2013 at 6:55am

Pam - I just read your latest post and you seem to have had almost exactly the same experiences with and progression of FFA as I have. I've now lost two and a half inches of hair from my forehead and I've recently started to wear a hairpiece which is really great and has given me a lot more confidence. So I'd say to you to give hairpieces a try. I've never tried couvre or toppik though I've seen them advertised so I'd be interested to hear from anyone who uses them.
I've just come back from holiday and the hairpiece I took was a great success. It was even totally secure on a breezy day on the top deck of an open-top bus! Like you I am not sure about taking hydroxychloroquine long term but I'm happy to take a natural product like turmeric (which I take in capsules) I really think that for me it's best to just learn to accept that I've got this problem and just get on with life. After all, this condition, upsetting as it is, won't kill me - there are a lot worse diseases I could have!
As for wearing wigs - well I just regard mine as a fashion accessory.

Comment by Pam on June 23, 2013 at 6:05am

Thank you for all your comments on turmeric - I had heard that it was supposed to be good for you, but didn`t realise it might be helpful in this condition. I will try it!
I have had FFA for aobut ten years, initially it started with losing my eyebrows and hair on my legs and arms, and then it progressed slowly up my forehead, so that now I have quite a visible hairloss of about two inches all round my hairline. I have tried a lot of the products mentioned, but I don`t really know if they have been effective, as the condition has not been arrested. I am currently taking hydroxochloroqine, but am not convinced that it helps either, and am never that happy about taking any drug on a long term basis.
I have been able to mask by condition by brushing my hair forwards, but recently have started to look at wigs and other concealing methods such as couvre and toppik. Has anyone had any experience of using them? Would elcome any advice.

Comment by Jodie UK on June 23, 2013 at 5:23am

Debs-I was also using veganicity which I was ordering from the Internet, but I now use Natures Garden from the health store, 400mg twice daily. I have never thought about using tumeric essential oil before, but I will certainly try this now that you have mentioned it , I don't know much about essential oils, does it make any difference the kind you use? If so what do you recommend? thanks

Comment by Celia on June 23, 2013 at 4:09am

On the subject of turmeric - I am using a Solgar product - Turmeric Root Extract - it's a PHYO2X blend of natural anti-oxidants - free from salt wheat soy gluten and dairy products - HOW DO THEY DO THAT ? !!!!!! Ha ! I take one a day. Am still using hydroxychloroquine and appear to have one of the side effects - hair loss .......................using dermovate (clobetasol) one a day - at night. So - losing my hair, trying to keep my sense of humour. The arsenal of pills includes a product - one pill a day for strengthening hair - high strength silica complex containing calcium, magnesium, zinc, boron, also aloe vera. Oh, and milk thistle to help counter the effect of all of this on the liver. Hmmm !
I am beginning to think now that research should be focussing on the cure, primarily, the cause (s) may never be pinpointed. I'm sure many of you would disagree with me on this ! XX

Comment by Debs on June 23, 2013 at 3:56am

Turmeric Essential Oil... have seen on internet you can apply turmeric directly to skin. There are quite a few 'receipes' where you mix turmeric powder with water or honey and apply, this method will leave a temporary yellow stain!! However, I hadn't realised you can get turmeric essential oils. I do sometimes use essentail oils in a carrier lotion or oil. I am not applying anything to my scalp so I may as well get some turmeric essentail oil, there are lots of brands on the internet, mix it with a carrier oil and put it on. Turmeric is used topically for psoriasis, scabies, ringworm, cuts etc.. it is safe to use on skin. I will report back how it goes. I hope taking it internally and externally will help reduce inflammation. Have a lovely Sunday everyone. XXXXX

Comment by Debs on June 23, 2013 at 2:50am

Jodie, can you please advise how much turmeric you take and what brand you are using ?? I am using it too and am happy to try different formulations if people think their brand is effective. I am using veganicity brand. Thanks

Comment by dee on June 23, 2013 at 2:47am

Is it just me or does anyone else get cramps and diarrhoea from the placquinel.I'm taking iron supplements as well and the combination can have a dreadful effect

Comment by Jodie UK on June 22, 2013 at 8:05pm

Celia-I have never had any wigs or hairpieces, I have lost between 3/4 inch and 1 inch all around my hairline, I have really thick hair and up until now have managed to cover up the hair loss, but I hate windy days and always feel a bit self conscious. I have tried all the medication including ciclosporin which did help but the side effects were too dangerous, I am not going to take any more
medication, as I think this condition will eventually burn itself out. I now only use dermovate cream every other night and take tumeric twice daily

Comment by Maddy, California, U.S. on June 22, 2013 at 3:39pm

Pam, I was on HRT (Vivelle) for about 5 years, starting about a year before my first hairloss started. My hormones were going crazy at that time and I had a lot of anxiety...panic attacks almost. The HRT was a God-send to me at that time, but I have also wondered about it and the hairloss (and even called Vivelle once and asked them about it)...but, it could also just be the huge hormonal swings during perimenopause? I was also having insane periods at that time and was losing a lot of iron. My ferratin level was almost non-existant. I also got a bad case of influenza that same year that everything was going crazy, it took me a long time to recover from that. I don't know...there were so many factors going on for me during that year. Sorry about all the details, but I always think details can be helpful because maybe someone else had a similar experience. Anyway, I have also had FFA for about 7 years, although it went undiagnosed (properly) until this current shed started and I started to really look for answers. Mine seemed to go into "remission" for about 4 years until a few months ago.

Comment by Rita - Canada on June 22, 2013 at 3:30pm

Pam, I have been ON & OFF a very mild dose of Bio-identical (creams) hormones.I haven't taken regular hormones,have colored my hair for many yrs, have been on B/P med for 7 1/2 yrs, exercised most of my life, first went to a derm re thinning hair 10 yrs ago but was told it's probably genetic & part of aging and am really not sure when the frontal area started to disappear.

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