Comment

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

Comment by Liz on November 19, 2013 at 5:15am

Hi. Can I ask you all if any of you suffer from Keratosis pilaris.? It's a condition where the skin on the back of your arms and tops of legs looks a bit like chicken skin and where the skin feels rough, like sandpaper. Please use google images for pictures. Both me and my mum had it throughout our childhood and young adulthood. I have read that it is caused by an over production of Keratin and it can affect the follicles of the eyebrow hairs. It would be interesting to know if any of you have it as I wonder if it is somehow related to this condition.

Comment by Debs on November 19, 2013 at 4:26am

www.ukdermarollers.co.uk

I have ordered my microneedle roller from this site.  I have the 0.5mm needles.  There was a study on males with alopecia that used needles of 1.5mm needles, another study in Australia used 0.75mm needles, however manufacturers advise less length for females.  The 0.5mm needle length if recommended for use on ladies scalps on this website and seems to be a length that females use when needling their faces to apply anti-aging creams.  Needling is not done every day.  2/3 times a week because the skin must have time to heal and for collegen to be produced.  So I will be only using topical treatments 2/3 times a week.  I can of course just needle and not use any topicals because the action of slight injury to the skin on its own is effective.  I have already experienced this from having my tattoing on eyebrows/eyelash enhancements.  This is just another tool for us all and a tool that we can use without drugs if we want to avoid any more medications.  I have bought a numbing cream just in case it hurts!!!

Comment by Liz on November 18, 2013 at 5:49pm

I'm not using any medication. When I was first diagnosed in September 2012 I was prescribed prednisolone and Doxycycline. I took prednisolone for 6 weeks (which was the whole amount I had been prescribed) and the Doxycycline for about 3 weeks (I stopped due to re currant thrush and concern how it might affect my health long term). I tried Rogaine in April which was prescribed by my derm bit I had to stop using it after a few days because it made my eyes burn and I had a permanent headache whilst using it.

For me, the best way forward is to try to limit the stress in my life. Easier said than done!I have changed recently changed one of the jobs I had which had caused me a lot of stress and I am making more of an effort to sort the things out in my life that are causing me stress rather than just letting them fester under the surface. I continually tell myself that doing my best is good enough rather than feeling that my best is not good enough. I am also trying to listen to my body more. I know that I feel bloated if I drink milk and eat bread so rather than accepting that I feel bloated I have cut down on these foods. I have some way to go with that but small steps.

I'm also one of those people who appears laid back to other people but I tend to worry a lot about things that haven't actually happened. I'm trying to work on stopping myself doing that!

I'm feeling lucky at the moment. My youngest  struggled at school. Quite often he would skip lessons and he hated going in. In September he started college and he loves it. He was choosen to represent is college at the skills show at Birmingham NEC. This has made me feel so happy and I know that I'm feeling less worried for him and so maybe that is what is helping my stress levels.

The one other thing I am doing which I think may be helping is to massage my head several times a day. If I am sat down watching tv I gently massage all around the front and temples. It was when I was doing this that after a few weeks I felt bristly bits of hair around my temples. It might work, it might not. But it does help me to de stress.

xx

Comment by Rita - Canada on November 18, 2013 at 5:20pm

Thanks Carol, yes the Rogaine on the Amazon site, haven't checked Walmart as yet, is the best price yet.  Now to decide whether to use it. Yikes, didn't realize such side effects.  I am on a blood pressure medication so will need to consider that too.  Did you personally have shedding on start up and if so, how long did it last?

Comment by Annie on November 18, 2013 at 5:20pm

Wow, Liz, that's unbelievable!  I'm so excited for you. 

Carol, my eyelashes have also gotten longer & thicker since I started using Rogaine 6 months ago.  I use the generic 5% foam version every morning on my entire scalp & on my eyebrows.  I 'm able to pick up a 4-month supply at Sam's Club in the US for $32.95.  I don't know if the foam version is available online due to the aerosol can it's packaged in.

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