Comment

Comment by PamW San Diego, CA, USA on December 28, 2012 at 11:48am

Actos is actually a diabetic drug that changes the way your body metabolizes carbs. The research is showing that toxic lipids are attacking the sebaceous glands which are located near our hair follicles. The toxic lipids are a byproduct of the way we metabolize. There is a gene called PPAR(g) which is turned off in LPP and FFA patients. The Actos turns the gene back on. Actos is the brand name but the generic name is something like Piglatezone. Actos has been known to cause bladder cancer and heart problems in patients who have taken it for a long time and at high dosages, so doctors are reluctant to prescribe it. My doctors gave me the ok because I would take it for a few months only and at a very low dose. I have been reluctant to comment because I don't want to give people false hope. However, I have noticed a difference in the amount of hair that I have shed. Also my scalp is less bothered. My bad days are when I eat gluten. I was on Doxy for three to 4 months and went off because the specialist I saw didn't think it was going to make a difference. It does have anti-inflammatory properties so derms prescribe it because they want to keep the inflammation down. inflammation is what causes our hair follicle to let go of the hair and eventually scar over to protect itself. Actos has been the only drug that has been shown to stop the hair loss. There is a doctor, Dr. Vera Price, out of the University of San Francisco who has done a lot of research for CARF and they found out about Actos. It is not the "standard" in treatment because there hasn't been enough research.

Comment by Jules UK on December 28, 2012 at 6:42am

Pam, what is Actos? It has probably been mentioned before, I'm sure. Does it have another name in the UK? I've just started doxycycline but Dr says it can take 3months to see a difference, if any.
Celia, hope the flooding passed you by and your Christmas was a good one.
Debs, It's so reassuring to hear your positive comments about starting to wear a wig. You really help! Thanks.
Bit early, but Happy New Year all!

Comment by PamW San Diego, CA, USA on December 27, 2012 at 5:10pm

Another gal on another board says it helped her and she started noticing the difference after being on the drug for about 4 weeks. I am on for a little over 20 days. She says she sees regrowth -- I always thought regrowth was impossible. I will be happy if things don't get worse.

Comment by PamW San Diego, CA, USA on December 27, 2012 at 5:08pm

Chris, I think it is. I don't see hair all over the place anymore, the redness is down and itching and burning only occurs if I don't eat right. I am taking 15 mg per day. Let me know what you decide!

Comment by ChrisC. Chicago, IL on December 27, 2012 at 5:01pm

Hey Pam, is the Actos helping? I'm in the waiting room at Dr. Barbosa's office. Looking for something else.

Comment by Debs on December 22, 2012 at 9:39pm

Celia I do hope the rain stops and you don't get flooded. X

Comment by Debs on December 22, 2012 at 7:53am

Jules thanks for passing on what happened with Dr Harries, I am waiting to hear when I will get my first appointment with him. I went outlast night with 4 girlfriends. 3 have seen me wearing wigs before(I am experimenting wearing them when I go out in the evenings) but one friend I had not told, amazingly she complimented me on my hairstyle and thought I had just tonged it straight! If I can't save enough hair I have been experimenting with wig wearing now for 2 months and feel comfortable in them thank goodness.
MERRY CHRISTMAS TO YOU ALL AND A HEALTHY NEW YEAR, thanks for all your support during the year.

Comment by Jules UK on December 21, 2012 at 2:24pm

Also..... Dr Harries said that thinking now leaned towards an environmental cause for the condition, since it's such a new thing. But stupidly I didn't press him on ideas about what in the environment might be responsible...... Food, pesticides, pollution? Anyone heard anything about this? I'll make sure I follow it up next time. (1st March,)

Comment by Jules UK on December 21, 2012 at 12:14pm

Thanks, Debs. It was as I anticipated really, but at least if any research is undertaken, hopefully we'll be in the right place to benefit with Dr Harries, perhaps. He didn't tell me anything I wasn't already aware of, but prescribed a stronger Protopic plus antibiotics. My impression from what he said is that, with this condition, we are each "pre-programmed" to lose an amount of hair. He cannot predict for anyone how much they will lose, nor how quickly. He cannot even say with any certainty that treatment makes a difference. For some, it seems to, but they may have slowed hairloss anyway.
It sounds quite negative but in a funny way, I feel a bit more accepting of it now. I'm crossing fingers that I'll be one of the lucky ones who only lose an inch or so from the front. The rest is OK really.
Celia, I'm sorry but I didn't pick up your email until after my appt. I went up on Wed night and didn't have Internet connection. But when I lost my hair from the temples this year, I didn't notice any redness either. I think recession from there has now stopped but I'm still putting Protopic there.
Happy Christmas everyone! Let's forget FFA for a few days if we can! Xx

Comment by Debs on December 20, 2012 at 11:15pm

Jules - good luck with Dr Harries today. I will be thinking of you.
Barbara - welcome to the group. XXX

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