Hi All,  Just wondering how those using the Dermaroller are getting along.  Are you using it on the areas where the ffa is active?  I think those areas would be too painful for me to tolerate it at present.

Also, for those taking Zyrtec:  How much are you taking each day, and how are you tolerating it?  Are you taking it along with the oral meds prescribed by the doctor?

Thanks in advance for sharing.  I so appreciate everyone who shares their experiences.

Annie, 'yes' I use it on the first 2 inches of my hairline, so basically the next bit of my hair that is going to disappear!!!! I don't get any pain from my FFA so it is OK for me to do but I can appreciate for those ladies that have painful scalps the dermrollers would be a problem.  I only use it 2/3 times a week as you are supposed to let your scalp heal in between rolling (or needling as I like to call it).  This is just one of many methods we are using to try and control our FFA, if you are unable to use it Annie please don't worry, it is just one of several options that I and other ladies are pursuing.  

Hi All, Just a note for those (including myself) thinking about using Zyrtec.  The side effects listed include a small chance of liver damage.  I'm definitely going to ask my derm at my 3 month appointment in January since I'm currently taking Plaquenil, which can also cause liver damage.

Debs, thanks for your information regarding the Dermaroller.  You are such a blessing!  It might be something for me to consider in the future.  I can tell that my scalp is very slowly getting better.  I noticed this morning that it no longer hurts when I put my sunglasses on - a small thing, but a blessing nonetheless.

My doctor also ordered blood work me after being on Plaquenil for one month, then again at three months.  I've been taking it for five months, and my blood work has been normal so far. 

I posted on Dec 5th that my GP categorically said that liver and kidney function tests are unnecessary with regard to using Plaquenil but that vision monitoring IS.  I was told by the secretary to my dermatologist that the results of blood tests done automatically go to my GP.  I asked the GP to check and there were no results.  I have requested copies of the test results from the derm as I would like to see for myself how the process works.  My GP had liver and kidney function tests done for me anyway and the results were fine, but I have asked for a printout of these.  I guess I just feel more confident if I know what is going on.

I saw cetirizine in the chemist at around £7 for a month's supply.  It's available on Amazon for just over £1.  I am going to try this even if it means dropping the anti-biotic I am taking. 

Brenda, how are you getting along with the zyrtec? I haven't tried it yet but did try claritin, another antihistamine that my husband takes for allergies. It seemed to help the itchy scalp but made my eyes, nose snd mouth very dry, which seems worse than the itching. I've also had the same problem with benedryl, when I tried using it for sleep. I'm wondering if zyrtec is different than these others.

Hi Celia, Do you have to drop the antibiotic if you start taking the cetirizine? I am considering to start on it too, but I am also on Doxy, and don't see my dermatologist until late January.  Thank you, Maddy

Hi MJ, I do not have any scalp irritation either...just the hair loss. I think the theory behind the Cetirizine is that this is some form of allergic reaction that makes our autoimmune system go haywire...something along those lines. I'm sure someone else can explain that a bit better :). 

I am wondering the exact same thing MJ! I have some Claritan sitting here on my desk! The study that everyone is referring to happened to study Zrytec...but that's all I know.

Alice, zyrtec has stopped the itching but it does cause my mouth to be dry.  I didnt have itching until a couple of months ago and it was driving me crazy.  I sip on water often to alleviate the dryness.  I take zyrtec, plaquenil, and doxycycline as prescribed by my dr.  I have to have my eyes checked twice a year while on plaquenil.  My eye dr gave me a chart to check my eyes each day but ive been on plaquenil so long that i forget to do it.  I was taking plaquenil for lupus a long time before i was diagnosed with FFA.  I have blood work done twice a year. 

I just took my first zyrtec - fingers crossed that you guys are on to something here! Also, has anybody had their heavy metal levels checked?  I just had mine tested and my mercury and lead are high.  My mercury is actually quite high (and I don't eat seafood or have any fillings) not sure if it could be from fish oil I am now taking but my holistic doctor seems it may just be from a lifetime of exposure.  Anyway, I read that mercury could lead to autoimmune issues so I would love to be able to get rid of it and get rid of this problem although once the FA is triggered, not sure if it will go away if the mercury is gone.  Just throwing this out there in case there in the event anyone had something similar and/or wanted to check their levels in case it is a potential cause.  Belated thanks to Debs!  I will send you an email as well.

Sam that is a very interesting idea about mercury.  I had my teeth filled at a young age (5 years) because I was prescribed tetracycline antiboitics to trea ifant peunomia this damages childrens growing teeth (not us now as adults), so I have been exposed to mercuy in fillings and I do eat lots of fish.  I wish the derms would give us all blood tests to see what our bodies are doing and test us for everything possible and see what we have in common and how we differ from the general population.

Hi All,

Regarding antihistamines:  I have seasonal allergies and have taken a generic version of Claritin year-round for several years. I wondered if it might interfere with the plaquenil, so I stopped taking it mid August when my seasonal allergies lessened.  I experienced my worst flareup ever in early September.  I'm wondering if antihistamines in general may lessen the severity of ffa.  Has anyone's doctor said if it's okay to take Zyrtec & Plaquenil together since both list liver damage as a side effect?   

I can't find anything referring to liver damage as a side effect of cetirizine - very young children are given this and also lymecycline.  I think probably any existing liver/kidney probs may be exacerbated by using these drugs.

Christmas soon ! Amazon have e mailed me to say the cetirizine is on it's way !

I dont think zyrtec causes any liver problems.  My 9 year old granddaughter was prescribed it.  My doctor prescribed it and he knows im on plaquenil.

Just received my DNA sampling kit from Dr Tziotzios.  I thought it was an unexpected Christmas present until I opened it!   I'll send it away tomorrow and hope it doesn't get delayed because of the holiday coming up.  

Yes, my present turned out to be a saliva sampling test! It does seem a bad time to put things in the post, with Christmas coming up next week!

What does liver level mean ?  How does your GP know it is due to plaquenil and not something else ?  What did she suggest ? One tab a day ?  I take only one tablet a day and I don't think it is making any difference to my hairloss, certainly not slowing down.  Kath - my Christmas present arrived today too -  something to enjoy later.

Sorry to hear this Rebecca!  If I were you, I would not do anything without further discussing it with your GP.  Maybe your levels are not significantly higher to warrant a change in your prescription.  You should discuss the risks and decide at that point whether to continue on with the plaquenil at the current dosage.  Plaquenil is very helpful when trying to stabilize this disease.  I hope this helps.

I'm sure we have all read the info regarding taking plaquenil and the side effects, but I've pasted this below.

This medication should not be used if you have certain medical conditions. Before using this medicine, consult your doctor or pharmacist if you have:

• certain eye problems (retinal or visual field problems from other aminoquinolines such as chloroquine)

Before using this medication, tell your doctor or pharmacist your medical history, especially of:

• alcohol dependency
• certain blood disorder (porphyria)
• certain genetic problem (G-6-PD deficiency)
• kidney disease
• liver disease
• certain skin problems (e.g., atopic dermatitis, psoriasis)

This drug may make you dizzy. Do not drive, use machinery, or do any activity that requires alertness until you are sure you can perform such activities safely. Avoid alcoholic beverages because they may increase your risk of liver problems while you are taking this drug.

As I said a few days ago. my GP said that it wasn't necessary to monitor liver and kidney function when on this drug.  I will ask him to explain this further for me.  I have asked to have copies on my test results done by the dermatologist.  Do the results of these tests go to GPs automatically for anyone in UK I wonder ?

my derm perscribed me 400my of hydroxy and I am only 5'1".  do you think I am taking too much?

I am 5'3" - I was prescribed 200mg twice daily but I did not feel good with that - I take 1 only and feel OK.  It is a little disconcerting that the prescribed dose seems to vary according to who we see. Does 'size' mean body mass as opposed to height - that would make more sense.  Anybody agree ?

Rebecca - interesting that your derm said plaquenil doesn't work.

Kath - how are you doing without a derm ?  Who is looking after you now ?

Polly -    I sent away my saliva sample today and I'd noticed when I read the literature that came with the kit that it mentioned blood and/or skin samples.  Dr Tziotzios never said anything to me about wanting blood or skin samples and only asked me if I'd be willing to send a saliva sample for DNA testing.  So I just figured that the literature that came with the test kit was what they sent to everyone who participated in any kind of test for the hospital  (There must be many other research projects being run at Guy's all the time, I reckoned).  Did Dr Tziotzios say anything to you about wanting blood or skin samples?

Celia - I guess I'm just getting on with my life!!  I haven't had a derm since September when she told me that the hydroxychloroquine hadn't worked for me and I might as well stop taking it.  She said that any other medication she had to offer would come with risks of side effects and weren't guaranteed to stop the FFA.. I told her I didn't want to risk drugs that could cause side effects. and she said that in that case she didn't need to see me again.

I guess I've just had to accept that for me the FFA will have to run its course.  It's bound to burn out some time!!

I use dermovate if my scalp gets irritated and I'm trying to be as fit and healthy as I can and get on with doing the things I enjoy.  The hairpieces are a great help in looking as good as I can.

How are things going for you with Dr Harries?  Are you OK with the hydroxy?  I think I rremember you saying you were considering taking an antibiotic and possibly an anti histamine too.  How's that going?

xxx.  

Happy Christmas everyone ! XX

Merry Christmas to everyone. xx

I wonder if Dr Harries' previous questionnaire results might become part of the research being spearheaded by Dr T ? I think Dr H's research may have had insufficient funding.  I have asked him for updates on my last 2 visits but no conclusive thoughts.

Kath - I am so sorry that your derm stopped seeing you after she thought the hydroxy wasn't working. The hydroxychloroquine does not work for me in that I still lose hair, still red etc.  I don't understand how you can be written off.

I am taking antibiotics. No effect. I know that one of our group recently posted that she was considered to be now free of FFA - I have not heard of this happening before - I hope that is still going strong.  Hope for some good news in 2014 !

I was just looking at how many have signed up on this website.  It's now at 117.  I was the 50th member to sign up in late March, 2013.  I don't believe this disease is nearly as rare as doctors think.  I think there are a lot of women who don't have any physical pain, and just accept the hairline recession as part of the aging process. 

I wonder if any of you are experiencing any kind of joint pain.  I certainly am - this has been noticeable for about a month now but has worsened lately.  I understand that arthritis is an autoimmune inflammatory disease and that one of the drugs used to manage this is hydroxychloroquine..............................

The other day someone shook my hand - a rather too firm handshake and I cried out - it was soooooo painful !  I have researched (as one does) on the internet and one of the tests for rheumatiod arthritis is squeezing the hand or foot - if this is unduly painful then that may be an indicator.  Has anyone got a view on this or any experience, please ? x

Celia, I'm sorry you're experiencing joint pain.  I wish I could offer you some advice, but the hydroxychloroquine seems to have helped my aches & pains.  My knees have hurt whenever there's a change in the weather as long as I can remember.  I've been taking hydroxychloroquine for almost six months, and  now have very little knee pain.  I do, however, experience pain in my hands when I do a lot of tedious work such as wrapping gifts, decorating cookies, sewing, etc...  I have some joint pain right now in the joints that connect my thumbs to the rest of my hand because of the extra work preparing for Christmas.

Thank you Annie for your reply.  I will go and see my GP I think and see what he suggests.  Perhaaps the different things I've been doing lately have triggered this situation.  The weather certainly doesn't help - this dampness really seems to get to me.  Sorry to moan !!

I had severe joint pain.  My Dr. said it was from lupus.  Hydroxychloroquine has helped immensely.  I tried to quit taking it because i thought it was the reason i was loosing my hair.  My joint pain got a lot worse and my hair still kept falling out so i resumed taking it.