Happy New Year to all of you ladies. Goodness Celia, this is getting very confusing, as you know I see Dr Harries on the 22 Feb, so we can all compare notes. I thought that since the plaquenil is an old drug (I believe it has been around since the 1970s) it would be cheap and there would not be any issues with health authorities prescribing it. I assume it is a cost issue if it is prescribed by some NHS trusts and not others....

Happy new year everyone hope you all had a lovely xmas, I did! we saw family and friends, eat and drank far too much but back to reality I start work at 8.30am so i shall be quick!!Celia I'm really surprised that you can't get the medication, it was the first thing I was given without having to take any bloods. I do have blood test now, every few months to check liver and kidney function since being on the drug, I'm waiting to hear now from my last blood test before xmas. Everything upto now has been fine, touch wood, I don't want to tempt fate by saying anything to positive !! This FFA is so confusing, is the doxycycline a similar drug to the hydroxy. I think my hair loss has slowed down but it is still going at the front. I don't know how long I can go on the hydroxychloride if there is a time limit or not I will find out in Feb when I see my dermolologist. It would have been nice to start the new year with a positive but here we go a again, it is a complex problem we are all suffering with, keep your chin up we will get through this!

Did a facebook page get set up? I wasn't able to find it.

I am new to this group and haven't been able to read through everything yet with the holidays, etc. I'm hesitant to put much on here since anyone who goes on this website can see what your writing. I did want to let everyone know that the University of Minnesota Derm Dept is trying to get a study going on FFA. They apparently see quite a few patients there including me. I will let my Dr know of this website and let you know when I hear more about the study. It will be by invite only that you can join. It may be a couple years down the road. I thought it would be interesting to start a page with just a list of questions that we would all like to ask each other. This might help to find our common link and help when a study does come along. I know I have alot of questions I'd like to ask to see if we have anything in common. Like - exposure to pesticides/herbicides.

Just went back and looked at some notes from my apts. I think the study on FFA at the U of MN has been approved, but had to go through a reviewal process. So not sure how long that will take. Also has anyone gotten a SKIN allergy test done? I have had the typical allergy test done but not one specifically for skin.

PJ, there is a group on Facebook called "Frontal Fibrosing Alopecia" that was created by Liz Coleman. You have to request to be a member I believe. There are quite a few postings on it. Also I live in Iowa and would participate in a study if there is one. It would be nice to see if there are more factors we all have in common.

When I search that it just comes up with a wikipedia looking site and there's alot of Liz Colemans on facebook. Sorry I keep posting but I have so many questions. I've seen some comments on getting eyebrow tattoos. How do you go about looking for someone to do that? Tattoo shop? Any negatives to doing that? Safety, etc.

Hi PJ, welcome to the group. It's good to know that some research could be going ahead. I'd love to participat but the UK is a bit far! I'm planning to have eyebrow tattoos done soon. From what I've seen, you certainly get what you pay for - I've seen some terrible results. So I'm going to use a wig shop that specialises in customers with alopecia / undergoing chemo. The cost is high - £400ish, but hopefully worth it. I think if you use a reputable place, you should be OK re safety / cleanliness / results. Ask to see photos of previous work perhaps.

Hi everyone and Happy New Year!! I have been out of touch for several weeks and enjoyed reading all the interesting posts. I have my 2nd appointment with dermatologist Monday and have so many questions this time.
I, too, was initially scared to take the Plaque(Hydroxycloriquine) but learned much more, from this site and from doctors.. I had an appointment with eye doctor this week and he said that eye problems rarely are seen until very long use. Hope we all won't be on it forever!!! He gave me a chart/grid that I am supposed to look at every day to make sure the lines are straight, not wavy.
One of the questions I have for the dermatologist is about the
autoimmune disease part - what do they know. I have a feeling that
stress is a big factor, at least for me. Anyone else?
Also curious about the red spot/rash between the eyebrows. I know a few of you also have that.

Celia, I feel for you with the septic. I have one, a very old one, also and it is a huge fear that the darn thing will flood.
Good luck.
Pam and Lacy - I am in San Diego for only a week. But I plan to be back in mid February - look forward to meeting w/you.

Pam, thanks! Actually I think my hair loss has slowed also and I think I have several new hairs sprouting on eyebrows - possible?? Maybe it is this COLD weather? I will let you know if anything interesting at apt tomorrow.

Hi Celia. I shall write or phone and ask to be included in the research x

Will you ask if we can all access and fill it in online or shall I phone and ask for one individually? x

Hi, I too received one of Dr Harries' questionnaires today. The last question made me go cold - do you regularly use a computer screen? I've been an ICT trainer/ teacher since 1982! Of course, I know at this stage it means nothing but .......
Celia - thanks for the info re eyebrow tattoos. I'll look into it, but Surrey is a long way for me.
Hairloss is getting quite bad at the moment. Whether this is linked to using Protopic and Doxy... i don't know. Has anyone noticed improvement with any medication?

Hi all,
I'd love to participate. Do you have an email address for your Dr. Harries??? I just filled in one for Dr. Donovan here in Canada and let him know that if he wants we can put it online and get all of you to fill it in too. so far, no response. It would be good if they pooled their responses/data.

Hi Jules. I was losing a lot of hair. I then took 5 weeks of prenisolone and doxycycline. I was prescribed 8 weeks but stopped at the 5. Now my hair loss is minimal. Not sure if it was due to the medication or it would have happened anyway but I have lost lots this year and the slow down conincided with the medication, after taking it for those 5 weeks it slwed right down x

Hi Celia, fantastic news about the survey, I will definately take part. Jules, I am computer literate but I rarely have to use a computer of any kind in my job. So I can say with certainty that I have not got FFA as a result of using technology. Please don't think that you have contributed to having FFA by your career choice. I was told by my derm that it may be chemicals used in shampoos and hair dyes etc.. the bottom line is the doctors don't know, it may well be a combiniation of things and an inherited predisposion to be sensitive to certain chemicals... if the doctors in the UK and Canada can pool their data that will give them a much better chance to find out what the triggers are. At least some research is being done.

Hi Liz, Just wondered why you stopped the meds after 5 weeks rather than carrying on for 8? I'm tempted to stop everything to see if hairloss slows, but I'm aware that it can take a while for their effect to kick in. It's so hard when you know that every hair lost is gone for good!
Debs, you're quite right about the shampoos etc. The questonnaire asks detailed questions about skin and hair care products. I'm trying to remember what I've been using over the years I've had this. I'm hardly brand loyal! But this questionnaire is a good start.... and I'm grateful to be involved.

Hi everyone, great news about the survey, I will ring Dr Harries for a copy if we can't get a downloaded version. I'm a bit concerned about the different messages we have been given re our meds. Liz has only been given 8 weeks supply I've been taking hydroxychloroquine since May which is over 36 weeks!! My hair lose has slowed down and I have my bloods tested every few months everything has been clear so far. But a bit worrying why has Liz only been given 8 weeks!

Hi. I stopped the meds because I was annoyed with my doctor. I saw him in September 2012 and was in his office for no longer than 15 minutes. He gave me 8 weeks worth of medication and when I had my next appointment through the post it is for June this year so as far as I am concerned how can he decide if the medication had any effect at all on my hairloss. I also went on his website where he says that 'Follow up consultations often take just as long as the initial appointment and I believe patients need time to have the diagnosis explained and to go through the different treatment options. This high level of service would be compromised by trying to carry out the consultation in 10 or 15 minutes to keep costs down.' This was for his private patients. He obviously feels that the care of those who do not pay can be compromised!. So I will have nothing else to do with him or his medication xx

Hi Heidi, I am so pleased for you that the meds are having an effect and your pain has stopped. X

Thanks for the clarification Pam re my confusion with Liz and my medication!I was getting worried that I had been given the wrong info.I am seeing my dermotologist in Feb, I'm not expecting much but I am going to ask how long I am to take this drug, the worry is if I do stop taking it, is my hair loss going to speed up again ( should i have a spare lot of medication just in case?)
Pam I'm so pleased you are pain free, thankfully I don't suffer that way my head is sensitive but not painfull. Can you remind me why Actos is ment to be the new wonder drug as I would like to ask my dermotologist about it, I can remember it has some harsh side effects but its worth a discussion with her!
Liz I'm sorry you have had such a negative response but don't let one person cloud your judgement, we have all had some kind of negative feedback, but just keep going back until you get what you want, there are always second opinions. But to be quite honest I have found more infomation on this web page than any of the 3 doctors I have seen! Thank goodness for all of you!x

Hi, sorry I am so late in getting back. Pam, it was a good and informative appointment. My dermatologist, Dr. Pelle, is very familiar with our disease and also very interested in the medical part, blood reports, etc. She said most of the patients she has seen are between 40-60 and I asked WHY ME? at 72? She thinks I was healthy and it was delayed. I was so surprised at that )the healthy part - I don't especially see it that way) and it felt good! I have never had the pain you talk about - glad you are without now. However, I have bad chronic pain from arthritis and have often missed other pain so maybe I just don't know.
I had good news. It seems the hair loss is slowing or stopping, there is no reddness so I am to continue same treatment for 2 more months - Plaquenil 2/200mg/day and Clobestol.
What you all might be interested in......Dr Pelle is interested in our website and would like to visit it. I was so busy and not able to be on the computer this week that I haven't sent it to her yet. I will on Monday. This is good news, yes?
Could one of you techies please tell me what website I should send to her? Hugs to all, Judy from San Diego

She also said sometimes it is possible for hair to return in some degree. Sorry I can't be more specific because I got a quite confused about that. I was so surprised as I thought it was impossible for hair to grow back with FAA.
One thing very intesting at the appointment was: first appointment she took photos of the hairline and it looked AWFUL!!!! Lots of red bumps and inflamation. So different compared to this time - 2 months later

Thanks Pam. I always go to the site through email and wasn't sure of the website. I am happy about the interest she showed.
Yours (and others symptoms certainly seems to be mysterious the way they change. How long are you supposed to give Actos a trial? Don't give up if you still have some time left - there are always "ups and downs" for most things. But still, I wonder why yours can change so much. How often are you using the Clobosel?

I have been using it every 2-3 days on all the "bare" areas but that is a question I need to ask her by email. Forgot at appointment. Originally she said to use every day or every other day - that was when it was so red.
Pam, have you had your blood checked? She sent me for 2 tests that my regular doctor hasn't done. Also she was questioning that my protein level was low and iron near low mark. Both are important to be near to normal.

PamW - I thought I would comment on the red scalp issues, My scalp has times when it's relatively normal but right now in winter it is really dry and flaky and a little itchy - like dandruff. The front bare parts of my scalp are white and not irritated - only irritation is on the part with hair. When my hair loss first started 1 1/2 years ago it was more irritated and very itchy - that's when I first saw my dermatologist and was prescribed the Clobetasol. I haven't used that in a while and usually use T-gel shampoo to control the itchiness and flaking. I'm not on any other meds since my doc didn't recommend anything as most of my hair loss was already done. If it gets worse I will go back to the clobetasol.

Hi Pam, I don't have any white flakes. My scalp doesn't feel any different than before I had FFA. I have the dermovate lotion, I am not using it simply because I have not got any reddness or visible iritation. My hair however is continuing to receed.

And mine had the white flakes before I was diagnosed. I was putting baby oil on it. My redness was along the forehead and temple at the hairline, tiny red bumps. Now it is white. From the sound of these posts it seems the clobesol helps or eliminates the irritation.

Hi, Robyn. Welcome to our merry little club. I am pretty sure that most of us have been recently diagnosed within the last year or two so we really don't have long term experience with Plaquenil. Coincidentally, I had an appointment with my regular dermatologist today. I see two doctors - one regularly and one is a "specialist" at UCSD (University of California San Diego). My regular doctor knows just as much as the specialist -- but she has never treated anyone with this condition. I asked her tonight about how long you can be take Plaquenil and she said it is safe to take for years. Many patients with Lupus take Plaquenil and she said as long as your liver panels are checked periodically, you can stay on the drug for a while. This is good, because our disease is a long term affair. She said I will probably deal with it for at least the next 10 years. I have to get used to the idea that I have a chronic illness. She thinks my hair loss is progressing slowly. She wants me to stay on Actos for a few more months and continue with Plaquenil and Clobetasol for the itching and burning.

Anyway, don't be shy. Just chime in -- we have all ranted and raved about how we feel. Within the last two days I have had some pretty awful news about the health of friends much younger than myself and with young children. I feel ashamed of myself sometimes when I think about how I obsess over my hair.

Anyway, Debs - I wanted to tell you that the reason why you look so beautiful in your wigs is because you are beautiful.

Oops - Wasn't sure where to respond and looks like I hit add comment too quick! Thanks so much Pam for responding so quickly. It looks like this condition is a 'waiting game' and I will have to be patient. I like to be prepared for what is to come (like a few others it seems), so I will continue to do research and try to keep up to date. Thankfully I haven't had the 'itching & burning' and didn't need to use the Clobetasol (which my specialist had prescribed initially). Of course I don't presume to think that may not happen!
I have also had reality checks with family who have faced far worse situations - so I try to keep things in perspective which I have to say does help cope at times.
Many thanks once again. I look forward to keeping in touch with the group.

Pam, your compliment is very much appreciated. Your doctor clearly is very informed about the long term use of Plaquenil. It is a huge relief to know that we can use if long term if needs be. I feel much more positive this year about my FFA and am not obsessing on it as I have in the past 12 months since first noticing my hair loss.

Hello to you Robyn - lovely to have your input.

Good mornign Celia. I wonder who the 'good dermatologist' is in Brighton. I imagine it's the one that I saw who isnt thaat good unless you want to pay him privatly. Strange really becuse now Im waiting for my appointment with Dr Harries!
I was prescribed plaqunil but I'm not risking it. I'd rather be bald that have my eyesight get worse than it is already. I've been told that one effect of the plaqunil is that you lose the colour vision in your eye. As an artist with poor eyesight I cant afford to risk it
It's a shame that there is no definative answer to our hairloss. I guess we can just try to find out as much as possible so that eventually they find a way of helping. It runs in my family so hopefully my children and grandchildren will be able to treat it because of us and our input.
Have a good day Celia and my best wishes that everything goes well for your sister in law.
xx

I have exactly the same thing Celia, just in front of the hairline. Its a dip in the central area of my hairline (where it was originally), seevral inches long at least and it was definatly not there before I had this problem.xx

It reminds a bit of a burn scar because the skin is thinner, indented and has no colour at all x

I can't detect anything like a ridge yet, but my hairloss is mainly at the sides so far. I'll keep a look out and see what develops over time. This might be the sort of info that should be interesting for Dr Harries - he said he'd not heard of red spots between the eyebrows as has also been mentioned.