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Comment by Celia on November 24, 2013 at 8:57am

Mandy ! How do you know what pond water tastes like ! ?? Sorry you've had a testing time - I check my hair every morning when I pull the blinds up - crazy !

There has been a lot of uplifting news lately from some of our group - I would feel so lonely in this situation without you all, so - a heartfelt thankyou to everybody.

I will contact Dr T next week.  Mandy - do you live near Birmingham - I can't remember, but Caro I believe sees Dr Rajpar too.  Enjoy your spirulina (without algae hopefully) and I hope it works, sounds positive so far.  Don't give up hope, Mandy - we all have down times with this beast of a disease.  Enjoy your Sunday X

Comment by Mandy on November 24, 2013 at 5:19am

Oh by the way I have also emailed Dr T about being involved in his research.

Comment by Mandy on November 24, 2013 at 5:19am

Morning folks, thanks for your comments... I have been using Betnovate twice a day since May... Think maybe I need to speak to my Derm about something different!
Seeing my Derm tomorrow and not looking forward to it as she is not that good! On the up side have just got my appointment with Dr Rajpar at the QE in January :0)
This week has been one of those weeks :0/ Had a very bad out break and think I may have lost a little more hair... But my scales has settled down over the weekend.
I'm frustrated with myself, the constant looking at my scale and hair... Have I lost more haven't I... Is driving me mad! Just wish I could get my head round it all and stop the constant checking! My lovely family assure me they can see no difference and would tell me of any noticeable change... And to top it all I tried Rapid Brow and now have a lovely red reaction around my eyes! If I didn't laugh I might cry lol... And I've done a bit of that this weekend :0(
The lovely thing about the site is hearing the successes. No matter how small... They lift my spirits and and give me hope :0)
So no more moaning... Thought I'd share something I'm trying... spirulina powder... I'm taking 2 table spoons a day in a small amount of orang juice. Not a great taste, a bit like pond water lol but I have been using it for 2 weeks and feel like I have more energy, skin looks great... So May comments of other people. Check it out has lots of benefits... Fits in with the whole improving the autoimmune system.
Will let you know how I get on with the Derm... Happy Weekend x

Comment by Pam on November 23, 2013 at 5:22am

Caro- I spoke to Dr Tziotzios last week, and he asked questions about the history of my FFA and what treatment I had received. I had a sheet with me of key hospital appts and what I had been prescribed, so it made it easier to answer.

He asked about general health, family members with similar conditon.

He also asked ME what I thought the causes could be! I said that I had always wondered whether it could be hormone related, as it seemed to primarily affect women of a certain age, and we were also some of the first generation who had taken the Pill and gone on HRT.

He then asked me what oral contraceptives and HRT I had taken over my life -  when I had started taking them - what brands - I found that harder to remember!

Comment by Kath UK on November 22, 2013 at 6:11pm

Caro - I spoke with Dr Tziotzios yesterday and he was very nice.  He  asked when the FFA had started and what progress it had taken.  He asked what I'd noticed first etc.  He also asked about my general health and if any other members of my family had had any alopecia or immune system disorders.  He wanted to know if I'd had a definite diagnosis of FFA and I told him the name of the consultant dermatologist I'd seen.  His questions were all very straight forward really.  .

I found it useful to have a note of dates when the hair loss had started and so on but I certainly didn't find anything he asked was difficult to answer.  He ended up telling me a bit about the research.

Hope that's useful. 

Comment by Caro UK on November 22, 2013 at 5:30pm

Thanks Pam. I'm feeling better about myself now.

Dr Tziotzios is phoning me on Monday. Wondering what questions he willl ask? I'd like to be prepared in advance of his call. Can anyone help with this? Thanks!

Comment by Alice on November 22, 2013 at 4:25pm

I have also had a lot of trouble with topical meds causing scalp soreness. I'm getting ready to try another one and hope I can tolerate it. I don't understand how something that is supposed to help inflammation can make it seem much worse.

Comment by Pam on November 22, 2013 at 9:44am

Caro I am so pleased to hear your story about finding a good wig! I am at a similar stage to you, and need to hear some success stories!

Comment by Annie on November 21, 2013 at 5:04pm

Mandy, your story sounds like mine.  I had very little pain until after I started using topical steroids.  I'm currently on my third one.   I don't know if the ffa is causing the pain or the steroids.  The redness & inflammation is much better, but my scalp is so tender that I can barely stand to style it or go outside on a windy day.   I'm hesitant to stop using my anything on my scalp because I had a flareup when I took a break from topicals for a month.  I've also been taking Plaquenil for almost five months. 

Comment by Caro UK on November 21, 2013 at 5:03pm

Thanks Annie, Kath and Debs. It's recently become impossible to disguise my hair loss by hair styling as I had been able to do. I am on medication but of course, as for all of us, have no way of knowing if it has slowed down the progress of this disease. All I can do is hope!  I'm taking Planquenil 200mgs daily and using Dermovate scalp lotion. 

Debs, thank you for attending the CARF meting and for posting all the info on the forum. I've been in touch with Dr Tziotizios to sign up for his DNA research and he's phoning me on Monday. Also will check out the needle rollers -  I've noticed that since I had my eyebrows tattooed I have had some regrowth of my eyebrow hair which has to be good!

Mandy, I'm sorry you've had no benefit from Dermovate lotion. I've been using Dermovate on alternate days for about 10 months but have had no adverse reaction - on the contrary it has helped the inflammation of my scalp. Wondering what others using it have experienced? It is a very strong steroid and I was worried about using it but my derm reassured me that it was the best course of action to reduce the follicular inflammation.

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