My opthalmologist said she had seen only 1 case of retinal problems resulting from to plaquenil. It was a 80+ year old woman who had been taking it for over 20 years and it reversed itself once she stopped taking the drug. She also told me that a lower dose is being used now than in the past, so the danger is lessened. I tried it for a while, went off when I didn't think it was helping but am thinking about going back on it for the long haul. My internist also told me that it was generally well-tolerated. As long as you get regular eye exams, I think it is safe. But I would recommend getting a baseline exam before starting it, just to be on the safe side.

Rebecca - I know this can all be so overwhelming. I struggled with the decision as well. I did not have an eye exam before starting it, but was told to be sure to have my eyes checked every six months from here on out. I did have a liver function test before starting and my derm took one again when I had been on it two months. It is interesting to see what different doctors recommend. My doctor did say that it is quite safe for the most part. Almost all drugs have some sort of side effect, but as far as plaquenil goes, the extreme side effects are very rare, from what I understand.

Hi Rebecca. I was prescribed Plaquenil and I wont take it. The eye hospital said that they would keep an eye on my eyesight if i do choose to take it but I am very short sighted and to be honest I would rather be bald than have any further eye problems. I have been told by my optician that any problems are not reversible and that the drug can interfere with colour vision which is another thing I would rather not risk.
x

Hi Simone. I was prescribed Doxycycline and Steriods. The Doxycycline was the alternative to the plaquenil. The steriods were prescribed for 8 weeks for a boost. However I have now decided that I am not going to take anything further until I have spoken to another doctor. I was a nurse for many years and I always err on the side of caution when it comes to medication. When it comes to my eyes I prefer to take the advice of the eye hospital and not of a dermatologist.
x

Hi everyone. I'm new to the group and have been following this discussion with interest. I'm seeing a dermatologist in a couple of weeks after a gap of two years during which I've been using Dermovate. Last time I saw a consultant dermatologist he suggested I take a course of Cyclosporin but when I read about possible side effects I decided against it. I wonder if this new dermatologist might suggest I might take plaquenil?

Hi Rebecca,
I have been on Plaquenil almost 2yrs with no side affects that I can detect. My specialist made sure I had an eye test that included checking the retina before going on it. At first she said I needed to have the test every year, but last appointment she told me once every 2 yrs now seems to be the requirement as research has shown there only appears to be a chance of getting retina damage over long term use. It would be wise to make sure you don't already have any retina issues before commencing the medication I would think. I am happy at this stage using Plaquenil as I do believe it might be slowing the process for me - I don't believe that or anything at this stage will stop the process though, which appears to be the consensus in our discussions. Ultimately you need to be happy with taking any type of medication yourself. It's good that you can get feedback from others who have the experience.

Ellen, Thanks for the info about the FM med you are using for itching. I tried it orally years ago, when they were prescribing it for just about everything but all it did was make me feel spacey. I didn't realize it came in a topical form. I'm glad the tea tree oil is helping. I've been using it along w/ TTO conditioner but now my hair seems very dry. I'm wondering what I can use for the dryness that won't further irritate my scalp. If it's not one thing, it's another.

Hi Has anyone tried Nizoral Shampoo and how did you get on? I have shed loads in the last few weeks and the main difference that would cause any effect would be the nizoral. I have read about possible shedding when you start but wonder if I should just stop it. I have also found out that the pill I was on and the implant before that were andronic so I have changed to a less androngic one in the hope that the loss slows down. My hair line is going rapidly now

Hi Celia, yes I am jetting up to Salford tomorrow... I will ask about gluten/diet and see if Dr Harries has an opinion on that. I suspect that most medical doctors tend to not look at the whole person and taking a holistic approach where you examine effects of diet, stress etc is not really taught during their training. I will of course ask the question. I know I will be offered the same meds that you have Celia, which is OK because at the moment I only have the steroid lotion Dermovate to use and I have not been applying it because I don't thank goodness experience any itching or redness with my FFA... Stacey, I do use Nizoral once a week, I have not found any problems with it, I use other regular shampoos too, I feel that because I wear wigs to work now I want to make sure I keep my scalp extra clean for hygiene reasons and I feel that as Nizoral is a medicated shampoo it must give a more thorough clean - this is just my opinion. XXX

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.

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

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.

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.

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.

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!

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..

Thank you, Debs, for taking to the time to report on your visit. I do find it astonishing that there is no one in London who deals with this at all, but I'm glad you found a good doctor who cares and is doing his best to treat women. Of course, there is no evidence that a gluten-free diet will help FFA, but there's also no evidence that it doesn't. There have not been any studies done, nor will there be anytime soon. No one knows much about this condition. My aim is to try to get at what is causing my body to have an autoimmune response and to cut off any other possible autoimmune illnesses. There is plenty of evidence that gluten sensitivity is related to autoimmune conditions.

Thank you so much, Debs, for posting the report of your visit to Dr. Harries. I'd read about him some time ago but had never seen a report from anyone who had actually had an appointment with him. I might ask if my dermatologist would refer me as I could fly down to Manchester from Scotland but I've already lost about 5 cm from my hairline and it is still progressing. I've had FFA for about 10 years so it is a slow moving thing. All I've ever used is Dermovate.

Hi Simone. Nice to hear from you! To answer your questions - no I don't wear a wig though I am now considering some sort of hairpiece - maybe a sort of fringe type thing. I don't know where I would go to get one here in Edinburgh but I intend to have a look online. I've lost almost all my eyebrows now so I use a semi permanent eyebrow pencil. I lost all the hair on my arms and legs first off (at the time I was quite pleased because I thought it'd be great not to have to shave any more!).
As to losing your mind..... maybe it's a bit easier for me because I am not a young woman. If I was in my 30's I'd be truly devastated and I am very sympathetic towards younger women (and men) who have alopecia. I've found that being older makes it easier for me to be philosophical. Also I have a very supportive husband and family and friends too. That helps a lot.
I've lost four good women friends to cancer in the last six years. Each one went through chemo and lost their hair and they had to deal with suffering from cancer too. Seeing that, kind of put things in perspective for me a bit.
I do still get a bit depressed of course! I wear hairbands a lot and hats too (I HATE windy days). I've probably got the biggest collection of hairbands in Scotland......
I guess I cope because I haven't much choice!

Hi Donna and Kath - it's good to hear your thoughts and stories. Donna, yours makes me a bit more optimistic about taking a gluten-free approach. I'm glad you joined the group. Kath, it's always good to read something which puts this whole thing in perspective. I'm so sorry for the loss of your friends.

If you're new to this, Simone, then I really sympathise. It is a shock, I know. But doctors are bound to come up with better and better treatments and I think you seem to be doing all the right things like healthy diet, exercise and lowering stress levels. I'm sure that helps - especially avoiding stress. And apparently FFA can stop at any moment. I can empathise about being scared to start the Planquenil - maybe one of the others in this group could tell you how they've got on with Planquenil.
It is confusing, I agree. All I can say is that I think being in a group like this can help - just knowing that you aren't the only one with this problem is comforting, I've found.

Morning :o) I've decided to buy a wig sometime soon. When I looked last time I was told that they fit more securely on a bald head but I don't want to shave my hair off. Has anyone who has a full head wig and has hair, had any problems with it staying in place? xx

For those of you who, like me, have a lot of scalp tenderness and itching, I think I have stumbled upon something that helps - Oolong Tea. I read about it helping people w/ eczema, so figured it was worth a try. I've been drinking 2 cups a day and my scalp feels decidedly better. Could be coincidence or placebo effect but, whatever it is, I'll take it. My scalp feels better than it has in months. I'm also taking turmeric capsules for inflammation. I'd be interested to see if it helps anyone else.

Liz, I have my own hair (well, minus the bit missing from the front) and my wigs stay on just fine, you don't need to shave your head to wear a wig - in fact you can use small bobby pins a couple at the front and back to anchor the wig in place. Your head is inside it, it isn't sitting on top of your head like a hat does, inside the wig and the back there are 2 straps that you can tighten and if you want to feel extra secure you can buy wig tape for about £5.00 on the internet and just put about 1 inch at the front of the wig to stick it down, it pulls off easily and the wig tape normally stays stuck on your head, you can pull it off or soak it off with rubbing alcohol (£2.00 for a big bottle on Ebay). A wig will not blow off in the wind or fall off if you turn your head upside down in a yoga class... Check out Patti's Pearls videos online, she is a lady that has survived cancer and has a wig salon she does these amazing videos of how to put wear wigs she is full of life and they are really fun and inspiring. If you do decide to get a wig rememeber you don't have to wear it 24/7, I have not worn mine since Friday, I went to gym and Tesco today just wearing a wide headband but having a wig gives you a few more options.

Jules, can you ask Dr Harries:
GRISEOFULVIN - antifungal is being used by Michelle in the USA with MINOCYCLINE ( minocycline is a tetracycline antibiotic like the doxycycline that is being used) what does he think of trying the antifungal?? I was so busy asking about gluten when I saw him last week I forgot to ask about the antifungal drug.

Celia it would be super if you could have a get together, it was great when we had a coffee back in November, I am up for that.
Jules, OMG I am astonished that your FFA stopped for 8 years after taking fucidin - yes, please do ask about that too. There are not many wigs that are designed to be slept in, you can sleep in a wig of course but you will find it does not last very long, there are some wigs that you wear non-stop for several weeks at a time (bonded full lace) they are available from online wig shops for about £200 and there are shops in London that sell them. I suggest you go on the www.wigsupport.com site and look at a recent post about sleeping in wigs.