Comment

Comment by MairiM on November 12, 2012 at 5:01pm

Jules - yes I was trying the 5:2 fasting diet. I have not done it for the last two weeks as I've had a really bad cold and haven't felt up for it. I did see it being recommended in a newspaper, with the proviso that we should eat a healthy 2000 calories on the non-fasting days. I do really like it. I do put on weight very easily and find it easier to fast two days rather than be constantly watching what I eat. Who knows if it affects the FFA? Website is playing up again - can't see any 'Reply' boxes :-(

Comment by MairiM on November 12, 2012 at 4:55pm

I have virtually no hair on my arms and legs. I think this went pretty quickly - not a gradual retreat like the hair on my head. Does anyone else agree? If so, it would be interesting to know Dr Harries thoughts about this.

Comment by MairiM on November 12, 2012 at 4:52pm

Some dogs, especially poodles, get a disease called sebaceous adenitis(SA) in which the sebaceous glands become inflamed, leading to progressive loss of hair and scaly skin. Some websites say that the hair grows back after treatment - dogs are more fortunate than us humans!

Comment by Jules UK on November 12, 2012 at 4:45pm

Thanks everyone. Heidi, I'm in Birmingham so a virtual hug will have to do, but it's no less welcome for that! I'm not quite wallowing in a corner, weeping, but sometimes it becomes overwhelming, especially when applying the steroids because then I'm forced to confront it. I went to an alopecia uk coffee morning on Saturday and met kath, a fellow sufferer. She's further on than me, wearing a custom made hairpiece which was very good. I've asked her to join us but haven't seen her here yet.
I've seen diets mentioned. Is anyone else trying the 5:2 fasting diet? I've been on it for about 4 weeks. It's getting easier but not helping the FFA that I can tell.

Comment by MairiM on November 12, 2012 at 4:42pm

There was an article in The Times on Saturday about the increasing occurrence of acne in the adult population. In teenagers 80% of sufferers are male. For adults the ratio is reversed. It goes on to say that Androgens stimulate ..... and the division of overlying skin cells. If these rapidly dividing skin cells stick together hair follicles become blocked, trapping sebum inside. Do you think there is something environmental causing both the acne and FFA, since both relate to damaged hair follicles and both are relatively recent phenomena? Sorry the article isn't available online without subscribing to The Times.

Comment by MairiM on November 12, 2012 at 4:29pm

Celia - it is a closed group on Facebook. If you click on the little lock beside the name of the group you will see it says 'only members can see the group, who's in it, and what members post' I think the only difficulty we are having is finding each other on FB. Who'd have believed there were so many Heidi Shorts in the world :-)

Comment by Heidi Short UK on November 12, 2012 at 3:26pm

Hi Jules, we have all been there, I know when I first found out I cried all weekend, I cried at work, at home , with my family, alone in my bedroom I felt so helpless. Until you have tried every possible thing you can do, like the best dermatologist, the best shampoo, the best diet etc and you are confident that there is no unturned stone you haven't tried, then you get some peace. I know now that I'm not going to wake up one morning with my hair left on my pillow or that when I have a bath all my hair is notall going to go down the plug hole in one big swoop! I haven't got that feeling of complete doom any more, I know that I am doing what I can, it is still receeding slowly but life still goes on and if the worse thing happens then yes I will get a replacement, but at the moment I can hide it. I've just been away to Newquay for a cheap and cheerful weekend away with my husband and 6 other couples. We drank too much, we eat too much and we laughed for 3 days and not once did i worry about my hair, they wouldn't have cared if I was bald or if I was wearing a full wig, they liked me for me. Some of them know about my problem but half of them didn't know and it really didn't matter. You will feel better soon, I know you don't think so now but you will. I send you a big hug! Where are you as i live in Somerset.

Comment by PamW San Diego, CA, USA on November 12, 2012 at 12:30pm

Don't cry Jules. I cried a lot too and I do think the stress makes things worse. I just know that I am doing everything that I can to fight the disease. Taking meds, using clobestasol and I have even decided on a gluten free diet, which is recommended for people with auto-immune diseases. I have eliminated wheat and artificial sweetners from my diet. Don't know if it has helped because you don't know what it would be like if you didn't take all the meds, etc.

I am going to do the best I can with my hair until I need to wear a wig and then I am going to plop the best one I can find on my head and get on with life. Think about this - if you spent the day today crying and sad with your hair, then you have lost a whole day of enjoyment.

I think about all the days I spent worrying or fretting over something and the next day I found out I had this disease, which was far worse than anything I worried or fretted over. You don't know what tomorrow is going to bring so take the good days you have and enjoy them. Get out and take your mind off of it. Go do something nice for yourself and remember the people who love you, love you for much more than your hair. We are all here for you.

Comment by Jules UK on November 12, 2012 at 12:05pm

Hi. I've just found this comment wall. Doh! I'm thinking along the same lines as Debs about trying to throw everything possible at this as early as possible. I'm really panicking at the moment as my hairline is getting pretty thin at the fringe now as well as losing a couple of inches each side. I've just had an appt come through to see Dr Harries, on 20 Dec. I know Celia is seeing him before then so it'll be interesting to see what she thinks of him. Feeling very low though, crying alot, which achieves nothing of course. Anyone had any counselling? I'm trying a meditation class which is great while I'm there but not so easy to try it with so much going through my mind at home. How quickly has hair gone from the front for anyone else?

Comment by PamW San Diego, CA, USA on November 12, 2012 at 12:02pm

I have been taking the generic for Plaquenil. I was given a baseline retina exam - just in case. The eye doctor said that eye damage was very rare, and in fact, if I did have problems, the problem would correct if you stopped the drug. He also said it was very rare. In any event, Plaquenil takes approx 3 months to get into your blood stream. I have been taking the drug since the beginning of August. I don't know if it is working. I am interested in knowing if your contact who has had the disease since 2006 has had any relief?

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