Comment

Comment by Heidi Short UK on January 12, 2013 at 8:22am

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

Comment by Debs on January 12, 2013 at 5:00am

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

Comment by PamW San Diego, CA, USA on January 11, 2013 at 7:59pm

Heidi, Liz's meds are much different than what we are taking. Our meds take 3 to 4 months before they begin to work. I have been on hydroxychloryquine (Plaquenil) since the beginning of August. it is a long term medicine. Prednisone (Liz's drug) is a powerful steroid that is only given for a few weeks, and you should come off of it gradually. My sister is on that drug and it has serious side effects and people are given that drug as a bridge until other drugs can begin working.

I have had 5 days in a row of being pain free! Yippee for me. Last weekend was so bad that I really wondered how I would go through life with this disease. Don't know what is responsible - Actos,
plaquenil or being gluten free. Hair loss has slowed.

Judy, what did your doctor say on Monday?

Comment by Liz on January 11, 2013 at 2:35pm

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

Comment by Heidi Short UK on January 11, 2013 at 12:15pm

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!

Comment by ChrisC. Chicago, IL on January 11, 2013 at 7:58am

Let us know if we can participate across the pond as well. I think we'd all be interested in getting to the root of this problem. (sorry for the bad pun)

Comment by Jules UK on January 11, 2013 at 6:22am

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.

Comment by Debs on January 11, 2013 at 3:48am

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.

Comment by Liz on January 10, 2013 at 5:45pm

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

Comment by CJ- Christine from Ottawa Canada on January 10, 2013 at 3:14pm

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.

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