Comment

Comment by Jules UK on January 2, 2013 at 1:55pm

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.

Comment by PJ - MN, USA on January 2, 2013 at 1:34pm

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.

Comment by KarenGinny - Iowa, US on January 2, 2013 at 11:46am

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.

Comment by PJ - MN, USA on January 2, 2013 at 11:45am

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.

Comment by PJ - MN, USA on January 2, 2013 at 11:11am

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.

Comment by PJ - MN, USA on January 2, 2013 at 11:05am

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

Comment by Heidi Short UK on January 2, 2013 at 3:13am

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!

Comment by Debs on January 2, 2013 at 2:41am

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....

Comment by PamW San Diego, CA, USA on January 1, 2013 at 11:56am

Wow! I thought health care was complicated in the United States! Celia, Plaquenil is actually the first line med given in the United States for LPP. The specialist I saw said it is the safest of all the drugs that can be prescribed. I did hear that hair loss could be a side effect, but I always felt like the doxy caused more of my hair loss than Plaquenil. I almost one month on Actos and I have had 3 days in a row without pain and itch.

Comment by PamW San Diego, CA, USA on January 1, 2013 at 11:47am

Plaquenil takes 3 to 4 months to work and it is supposed to work with your auto immune system to tamp down the inflammation in your body that is causing the redness, itch and eventually the hair loss. The hair loss is because of the inflammation. Good luck to you and Happy New Year to all.

• ‹ Previous
• 1
• …
• 474
• 475
• 476
• 477
• 478
• …
• 507
• Next ›
• Page