Comment

Comment by PamW San Diego, CA, USA on January 13, 2013 at 12:04am

I only use it when my scalp is itchy or inflamed. how often do you use it?

Comment by Judy on January 13, 2013 at 12:03am

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?

Comment by PamW San Diego, CA, USA on January 12, 2013 at 10:44pm

There is nothing better than hope! I had a whole week of a peaceful scalp and it is acting up again today - redness is back. I think you should tell her about alopeciaworld.com and to look for the frontal fibrosing alopecia group. I am thinking that Actos really isn't helping, so I am not sure how long to stay on it.

Comment by Judy on January 12, 2013 at 10:27pm

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

Comment by Judy on January 12, 2013 at 10:12pm

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

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!

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