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Comment by Jules Australia on September 24, 2019 at 10:02pm

Halfbakedwho, I get the gist of what your saying about Dr Donovan. I sift through his site from time to time for info regarding lpp/ffa, however much of it I have already seen from researching Pub Med & other research sites. Some of the info on donovan medical however is iexplained in more 'laymans terms' which canbe helpful. But I find it odd when he describes his protocl for treatments as capable of stopping the disorder in many of his clients, .... when there is no research that proves catagorically that the treatments actually stop or slow down the disorder (xcept maybe ?one using finasteride or durasteride). There are women who have chosen a no-drug path (due to concerns of potential side affects &/or other reasons) & the disease can continue very slowly for many years, flare for periods, then calm down for periods of time, or stop as suddenly as it started with or without drugs (without any conclusive understanding in the research of why/how this happens). At this stage I simply can't fathom how the derms could possibly know if  the ffa/lpp is responding favourably to the drugs on offer or whether the flaring & settling of symptons are part of natural course of the disease. !? So often the literature seems quite contradictory.  I can relate to your description of at times 'feeling frozen' ..... when choosing not to use the drugs on offer, as the chronic continuance of the disease can make it all feel pretty hopeless, like a run-away-roller-coaster, ....'out of control'. In the end tho each of us ultimately have to make our own decisions after trying to gain as much knowledge as possible on this ghastly condition .... there are no right or wrong choices .... Again thanks for listening & for everyones input here, so grateful for this forum and to all here for your support, 'cause nothing has helped me more while dealing with the daily challenges of living with this  xxx 

Comment by Halfbakedwho on September 24, 2019 at 8:48am

Hi again, yeah my eyes are dry too along with everything else : b but my doctor says it's menopause. My hair is really thinning a lot on top and I'm not doing a dang thing about it aside from watching it leave my head - I'm kind of frozen these days in terms of trying other stuff. The facebook page has some good info, yes, but it doesn't feel so private to me, and I get sick of the cult around Dr Donovan in Canada, who seems way overpriced and very patronizing - posting things that seem a bit blame-y and sanctimonious though I could absolutely just be overly sensitive. Don't tell me what to do with my head... etc. etc. I'll be back later must help my son with a thing. And CurlyK yes do tell about your new hair. And BTW am coming back to Florida in February : )

Comment by Jules Australia on September 22, 2019 at 10:28pm

Thanks for the tips on relief with Occusoft. Will put that on my list of things to try.  & ps Curly K I LOVE your new hair ... does it work the same way as your last style where you keep on, wash & wear for several weeks before goingback to salon for readjustment; & how easy is it to care for? 

Comment by Jules Australia on September 22, 2019 at 10:21pm

Hi everyone, I haven't commented for a while, but I'm still here, still wit lpp/ffa & it's slow, chronic, ongoing symptons. Has been 7 years now for me since the onset of the pain burning odd scalp feelings & noticeable hairloss. I commented some time ago, & if you go back through the forum comments from past several years there have been many comments regarding ffa/lpp suffering from blepharitis/dry eye etc, including myself. There is a reference to this  connection on Dr Jeff Donovans website donovanmedical.com/hair-blog/lpp-and-the-eye "Lichen Planopilaris and the Eye". And I think he got the info by referencing a research article in review optometry 'Scalp disease patients at risk of MGD & Dry Eye. I told my GP 6 or 7 years ago that I felt there was most likely a connection.It is common with other autoimmune conditions as well as hypothyroidism.

Comment by Lisa D on September 21, 2019 at 10:26pm

I have blepharitis as well. My dermatologist and my eye doctor recommended doxycycline when my scalp was especially inflamed and my eyes were especially bad ( constant chalazions, red eyes, etc.) It seemed to be working but then it seemed to be triggering migraines. The dermatologist then had me cut the dose in half and try again. It was a big help! Everything calmed down and has seemed to remain stable for sometime since stopping (Knock on wood!). To be safe, however, I use OcuSoft Plus wipes (I cut in fourths to make them last longer) regularly.

Comment by KarenD on September 21, 2019 at 7:03pm

Halfbakedwho which FB page do you follow?  Do you feel you get any new tips/ideas from it?

CurlyK does the Rapid Lash irritate your eyelids at all?  I tried Latisse and my eyelids did not like it at all!  Very red and irritated skin after that.  I guess that is a common side effect for lots of people.

Hope everyone had a good summer.  I know I am ready to welcome the fall and some cooler weather!

Comment by illustr8r on September 21, 2019 at 6:42pm

Yep, the OcuSoft products are wonderful. I bought OcuSoft Platinum that is for use in the shower. It’s like a soapy mousse and a teeny bit goes a long way. So, no matter if I’m having issues or not I use that in the shower daily. I use the wipes at night too-especially if I sense trouble ahead. My right eye has it the worst. 

Ugh.

Comment by Plf on September 21, 2019 at 8:35am

1. Hola all, thanks for all the tips, will check out eye products tomorrow, seriously if they had a nurse clinic, the nurse would be on top of all this , suggesting non drug solutions for the side effects of FFA, unfortunately big pharma cology companies have way too much influence, keep up the dialogue girls, it's fantastic

Comment by Minter on September 21, 2019 at 8:13am

Oh man, yay another thing to do with FFA, well that explains all my eye problems then!   I've been using Lumify during the day for a couple of months and Sumilasan allergy eye drops at night, especially if my eyes have been exposed to something itchy or irritating.  Er, that is like everything, every day!  This routine seems to be the best for keeping my whites white anyway.  I've tried pretty much every dry eye drop there is for so very long and was still stuck with weird red/yellow whites, hated it. always looked like I 'just had myself a J' or was on zero sleep haha!

I am going to look into the Occusoft wipes and the Rapid Lash, thanks for the tips :-) 

AnnieMay, I've used Hairstory, it is great!  I only stopped because, well I am not sure why I stopped, probably because of the price! Though in the long run it actually isn't that expensive.  I guess I just keep searching for that magic hair stuff ;-/   I've been using moo goo shampoo and conditioner for the past several months and am equally as happy with it- Also, I don't use any meds for FFA, the side effects (to me anyway) are not worth it and nothing seems to be 100% effective.  I use boost n blend to hide the thinning and color my roots darker and that has seemed to help for the time being.  But the hairline keeps going back and back, so it is only a matter of time now. 

Halfbakedwho, good to see you back! 

 

Comment by AnnieMay on September 17, 2019 at 11:11am

Hello all! I had no idea that dry eye could be associated with FFA. My eyes have been driving me crazy. I’ll try the Occusoft wipes.

My hair texture has taken a turn for the worse now that it’s fall as well. It all seems to come and go for me which is so strange? I decided to give New Wash shampoo by Hairstory a try. It takes a while to get used to because there’s no “detergent” so it doesn’t lather but my hair feels thicker and my scalp seems calmer. 

I’ve never tried doxycycline but I’m curious what others think. My overall thinning seems to be worse so I think I’ll try minoxidil again. Ugh. . .

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