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Comment by Lorn. New York, USA on February 23, 2013 at 11:28am

I thought I would give an update with the medications I have been taking. I saw the dermotologist yesterday and I no longer use the clobetasol propionate solution in my hair and instead I am to put in the scalp behind the hairline the desonide cream. I am to no longer put the desonide cream on my eyebrows but instead use rogain applied with a q tip. I originally started with one dermatologist and this is the second time I have seen this one. I think that's rat of the issue this time was my skin thinning. He also said that the desonide cream on the eyebrows for a prolonged period of time is not good. Still taking placquenel and antibiotic. The dr asked me if I had any signs of lichen planus since this is related which I don't. I also had more shots yesterday which hurt like nobodies business.

Comment by Debs on February 23, 2013 at 11:03am

Rebecca, the problem is that because the condition burns itself out at different places you can't be certain if it is the drug or it would have stopped at that point on it's own... He did not give a figure of what percentage of people it can help because you can't prove it was the drug... I have no irritation or itching either Heidi, the steriod injections are to stop the hair loss, Dr Harries said he has found them to be helpful. He was realistic and did not in any way lead me to think there was a cure but we can try to stop further hair loss. It is just a question of having a go and seeing what happens. I have agreed to be part of a survey that I know Celia is already involved in. It would be extremely useful for medics if they did have a central database for FFA and they could compare the effects of drugs/doses etc..

Comment by Heidi Short UK on February 23, 2013 at 7:26am

Hi Debs
So glad you had such a good experience with Dr Harris, he really does seem to be thorough and knowledgable, which makes a huge difference from alot of doctors, which in turn gives us confidence! I had contact with him a few moths ago, and he was trying to get founding for a data base for all FFA sufferers, which would be really interesting,did he mention any progress on this? Iam not under Dr Harris, as I am happy with my own dermotologist but I am on the same medication as you, except the steroid injections which at the moment I have said no to as I don't have iritation or itching. Glad it went well!

Comment by Debs on February 23, 2013 at 1:07am

MY APPOINTMENT WITH DR HARRIES:

I gave him my letter from my own derm confirming I have FFA from a scalp biopsy. Dr Harries examined my scalp. He sent me for a blood test to check liver/kidney function before I start hydroxychloroquine sulphate, he will ring me in a week with results. I have got the drug. He gave me a prescription that I filled at the pharmacy at the hospital so I can start the drug immediately he gives me the all clear on my blood test. I went to the medical photographer and had my hairline photographed so he can see the progression of the FFA. Dr Harries said he will give me steriod injections in scalp next time - said he has seen evidence that can help. He can also give me the doxycline when I have started taking the hydroxychloroquine (you can take both together but he starts you on one to check for side effects because if he gives you both you can't tell which drug is effecting you). I had an eye test with a nurse.

I asked how far the FFA can progress. He said it can be between 1cm and 8cm. You can also lose hair from the back hairline (nape of neck). You can't tell for certain how much a person will lose but often people that lose hair slowly lose less than people that lose hair faster.

So, it is hydroxychloroquine, doxycline and steriod injections in scalp to start with. He said there are other drugs you can use to suppress the immune system, like Actos, however since Actos has now been banned in France for all uses it is something you need to really think about - I said I don't want to use that drug.

Dr Harries asked if I wanted to keep seeing him because of the distance involved (I flew up from London to Manchester) because he could recommend treatment and my doctor could prescribe, he did then add that he can't make my doctor prescribe a drug for me he is only recommneding... I don't want to take a chance of my GP not going along with Dr Harries recommendations so I will continue to fly to Manchester and be treated by him.

I asked about the gluten free diet. He said there is no evidence to say it helps FFA.

Any ladies in the UK I would strongly advise you ask your GP to refer you to Dr Harries. I know it is not convenient for most of us to travel to Salford but it is worth the trek. I flew to Manchester. The taxi was £28.00. I used a fixed fare taxi company that have a booth outside Terminal 1 Arrow Cars 0161 489 8899 and I got a taxi back from the hospital that was a fixed fare of £23.00. There is a free phone to a taxi company in the main reception opp the M&S shop.

I am so SO grateful to Celia for giving us all this info on Dr Harries and encouraging us to see him. This is the first doctor that has really understood this condition.

Comment by Alice on February 21, 2013 at 7:23pm

Stacy, I am interested in your comment that the pill and implant you were using when you started losing your hair were androgenic. I noticed my hair loss a few months after I had a hysterectomy and began using a vaginal cream w/ testosterone in it. Not long after I switched to one w/ just estrogen, my hairdresser noticed new hair growing all over the top of my head. Unfortunately, I haven't had any regrowth at the sides, where it's the thinnest. or along the hairline. But I'll take what I can get. I tried Nizoral but found it to be a bit harsh, especially since my hair tends to be dry.

Comment by Susanne on February 21, 2013 at 4:18pm

Sure, Simone. Yes, eyebrows are affected. Hard to know how long I've had it, actually. I didn't notice it properly until I went to the derm to see about my eyebrows and that was in July. It was clear that I had had it for a bit. I've been taking Plaquenil for not quite three months.

Comment by Simone NJ USA on February 21, 2013 at 2:59pm

Hi Susanne:
Could tell me how long you have had FFA and have your eyebrows been affected as get and also what are taking and how long you have been it? I'm sure you have said it already but since I'm still fairly new to the group I need to catch up...thanks a lot...

Comment by Susanne on February 21, 2013 at 10:00am

Here is an M.D.'s take on the whole gluten "fad". http://www.huffingtonpost.com/david-katz-md/gluten-free-diet_b_9070...

Comment by Susanne on February 21, 2013 at 9:32am

All the best to you tomorrow, Debs.

As the gluten-free guinea pig, I want to let you all know how it is at almost six weeks without gluten and without much replacement through other grains, but rather more meat and veg and healthy oils. (I'm eating a pumpkin "pancake" for breakfast as I type). I'm leaning a bit toward the paleo diet, but am not following strictly by any means. I've had a couple of days of itching and one small red patch, but it seems that the hair loss has slowed down somewhat. It certainly hasn't increased. To be honest, I'm not sure if this is going to stop it - I'm skeptical. BUT while I was super skeptical of this whole gluten-free business to start with, I can already tell you I'm not going back. My diet is a lot better, I've lost a bit of weight, my skin has cleared up, my mood is significantly better. It feels like I'm on some sort of low-dose anti-depressant. I haven't sobbed uncontrollably about this whole mess in weeks and weeks and it's not because I haven't felt distressed by it. It's the strangest thing. Since everyone says to watch out for other autoimmune diseases, I've decided that this just may keep me from getting on. I think the big problem with the whole gluten-free thing is that (at least here in the U.S.) it's such a diet fad at the moment and that makes a lot of people skeptical. By the way, the nutritionist/acupuncturist who is treating me studied conventional medicine in Germany before coming to the States and turning to alternative medicine.

Comment by Simone NJ USA on February 21, 2013 at 8:53am

Hi Debs:

Good luck tomorrow...I'm curious about the doctor's opinion on gluten/diet as most doctors aren't trained to provide nutrition to their patients but rather treat them with just meds. Xx

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