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Comment by Jules UK on November 20, 2013 at 7:56am

Thanks, Liz. We're all so different. I've now got my needle roller and am trying to pluck up courage to use it. Maybe try it on a leg first.
Pam, I'm sorry you're disappointed with your hairpiece. Trendco in Bham also makes custom hairpieces and when I saw them when first diagnosed, they said that they could arrange a meeting with another FFA sufferer who had one to see how they looked. I'm not yet ready for that but maybe you could take them up on the offer? X

Comment by Liz on November 20, 2013 at 6:24am

Hi Jules. I have not had a biopsy. I lost a lot of hair very quickly, within 1 year I had lost several inches. My mum has had this condition for about 7 years and has lost about 4 inches. She has never used any medication. I have male pattern thinning of my hair as well and I think at some point my shedding took place very quickly ( I cant remember the name for this). I think that the hair that has grown back is maybe the hair that shed quickly, maybe? 

xx

Comment by Pam on November 20, 2013 at 5:32am

I had a long talk with Dr T yesterday, and am going to be taking part in his research. I am so delighted that more research is being done into this awful condition.

It is great that Liz has experienced some hair regrowth, it really does give us some hope! I feel full of drugs at the moment, and don`t know where or when it will end!

I`d love to know more about your hairpieces Kath, as I got one yesterday but when I wore it home my husband said it was appallling, and you could see the contrast between my own hair and the top piece so clearly it was obviously fake, and it looked too top heavy as well! At least he is honest, which is a good thing!! Do your pieces clip in, or are they taped on? Are they synthetic or real hair? I know it would give me more confidence if I could find a good one that just covers my front and sides, and feels lighter to wear than a full wig.

 

 

Comment by Jules UK on November 20, 2013 at 4:24am

Liz, just wondered whether you'd had a biopsy to confirm FFA? Mine was diagnosed without because the pattern was so typical, there was no need. Maybe you were the same. We're always told there's no hope of regrowth, and yet you clearly have some!! It's certainly given me a more positive outlook and I'm sure I'm not alone in that.
I've emailed Dr Tziotzios; just waiting for a reply. X

Comment by Kath UK on November 19, 2013 at 5:32pm

I've also contacted Dr. Tziotzios and will speak to him on Thursday.  I agree with Dee that it's nice to be able to do something to help research into FFA to benefit people in the future.

Liz - it's great that you've had some regrowth - long may it continue and I think you could be right about stress.  

Stress certainly could have been a factor for me (my hair loss began at the time when I was helping care for my mother who had dementia).   I'm not on any medication now except for Dermovate which I use only when I get a flare up.  The dermatologist I was seeing earlier this year told me that the hydroxychloroquine hadn't worked for me and the only other medications available carried the risk of side effects - which I don't want. ( I suspect she felt my age was a factor too).  Anyway I'm going to do the stress reducing bit like you, Liz, get on with my life, hope the FFA burns itself out and be glad it is nothing worse!  At least I've got my nice hair-pieces which have really boosted my morale.

All of you ladies who are trying the treatments - I'm rooting for you!.  It's only a matter of time before the doctors find a cure so hang in there.

 

Comment by dee on November 19, 2013 at 2:59pm

Thanks debs for gathering all that information. I've contacted Dr Tziotzios and will be giving a sample. Its not going to help me but I felt better today knowing that some research is starting and that people may benefit in the future. I'm confused about what the rollers are for. Never heard of this before. Take care

Comment by Maddy, California, U.S. on November 19, 2013 at 11:38am

I have a phone call set up with Dr. Tziotizios this coming Thursday afternoon (a bit harder to coordinate with me being in the US).  I just wanted to say thank you to Debs again for getting all of this information to us! I am looking forward to it. I have never had Keratosis Polaris, nor has anyone in my family that I know of. 

Also, Annie, I have been wondering that same thing about those rollers. It makes sense to stimulate the scalp, but, then again, I think my hair loss started up again after my biopsy, so I don't know. It is so hard to tell with this stuff!

Comment by Annie on November 19, 2013 at 10:36am

Liz,  I've also had little pink bumps on the backs of my arms since I was a teenager.  I've never been concerned enough about it to consult a doctor.  The funny thing is that after reading your post I felt the back of my arms only to find that they are now completely smooth. 

Debs, I have a question for you if you don't mind.  Please forgive me if I'm asking something you've already answered.  Should the Dermaroller be used on the bare spots and where the ffa is active?  I'm concerned that this might cause a flareup. 

Comment by Betty on November 19, 2013 at 9:48am

Liz,
I also have keratosis Polaris. My Derm says that about 40% of the us population have it (she has it) I am not inclined to think it is related only because if it were, a LOT more people would be suffering from hair loss. Mine is just my upper arms. 2 of my 6 children have it as well.

Comment by Polly UK on November 19, 2013 at 9:11am

Hello all, so much is happening on here at the moment which is great!

Thank you Debs for your excellent notes taken at the CARF meeting. I sent an email to Dr CHRISTOS TZIOTZIOS and had a phone chat with him this morning. It was interesting answering his questions about my medical history and that of close relatives as there were a few things which may be relevant that I wouldn't have thought of! He will send out a kit to me in due course.

I'm so pleased for you Liz and thank you for sharing your photos and changes of lifestyle. I'm sure a major cause of FFA is stress.

I've now been taking Hydroxychloroquine for 3 months and I'm still using Dermovate lotion though not every day. I get flare ups when I feel stressed and also when I think my sugar levels are high eg when I've had a bit too much wine or cake! This is usually when on holiday! My annual blood test usually shows my glucose levels to be a bit high so I try to keep carbs to a minimum but I do like a glass of red wine in the evening.

It's been 4 months since seeing a GP and getting an NHS referral to a dermatologist and at last I have an appointment for early December. I have seen the same derm privately 3 times already and all prescriptions and blood tests have been funded by the NHS.

Also there was more good news on here from Paula uk I'm really pleased for you too. You had taken a 40 day course of Prednisolone, this steroid drug always helps when I have an asthma attack but it's usually only 5-7 days of 8 tablets needed to clear the inflammation. Based on your success I am going to ask my derm for a course, however at my first appointment he said he didn't like prescribing it long term because of side effects but I know some asthma sufferers who take it for long periods.

I have lost just over an inch at the front hairline, more at the sides and small patches are appearing in the back. The whole front section has become very thin but fortunately my hair was originally very thick so I can still hide it but not sure for how much longer.

Thank you so much Celia for starting this forum, I'm sure without it many of us wouldn't be aware of the wide variety of treatments available and good to feel we're not alone. Also a big thank you to Debs for attending the CARF meeting as we most likely wouldn't have heard about the research being carried out by Dr TZIOTZIOS.

Best wishes
Pollyxxxx

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