Replies to This Discussion

Permalink Reply by Halfbakedwho on April 16, 2018 at 9:26pm

Hi BubbaLu, 

This is a comforting and interesting thread - how are you holding up? 

Ellen - Plaquenil scares the heck out of me, but the idea that NOTHING topical can work seems logical, and yet not what the doctors tell us (or me, in any case). So injections don’t work either? Not that I have had or want injections... I haven’t and don’t. 

I am « lucky » in that (knock wook) I haven’t had any other hair loss other than on my head. 

I too would be interested in the medicine you talk about for lung cancer (of all things!)

could you post a link?

Permalink Reply by Ellen on April 16, 2018 at 9:43pm

Dear Halfbakedwho (?),

I've seen some pictures of people who had too many injections and it ain't pretty.  Really ugly forehead, etc.  Can cover that with a wig!

I googled something like:  experimental drugs for autoimmune diseases curing cancer.  And there it was!  However, it's still in R&D.

I have no affects from the Plaquenil.  The eye doctor told me that it only affects your eyes after you use it for two years.  I'm at 10 months.  I know, there are risks.

Ellen

Permalink Reply by Susiewoo on April 25, 2018 at 3:22pm

hi BubbaLu,

so sorry to hear you've been given this horrible diagnosis.  I have suffered with ffa for just over 2 yrs now.  Iv tried antibiotics and steriod foam which didnt seem to help for the first 6 months, then my dr gave me hydroxychloroquine

Permalink Reply by Ellen on April 26, 2018 at 3:40pm

Dear Afraid,

It's hard for me to answer your question of how long I took the Plaquinel before it started showing results.

I started by using a topical for about a month or two along with Prednisone.  Then I finally got on the Plaquinel.  It seems like it responded quickly.  I simply don't remember.  Maybe the Prednisone did the trick, but they don't like you on that for long.

My PS is that, I guess it was BubbaLu that referred me to a Pinterest FFA page where I found an article that said something like this (I may be misquoting, but close): In a study of Plaquenil, 73% had success.  And that the peak was at 6 mos.  I have been taking it for 10 mos.  So I decided to get off of the Plaquenil.  It's been a week.  No red bumps.  Some itching, but no bumps.  So, I am waiting to see if it will return, but praying to God that it doesn't.

That's it for now.

Best wishes for your success!

Ellen

Permalink Reply by Afraid on April 26, 2018 at 4:11pm

Thank you so much Ellen for taking the time to reply and giving me a little more hope  :-)))))). Haha!  I can’t even begin to tell you about the crazy things I’ve been doing in addition to taking plaquenil and clobestal... headstands are my latest attempt to scare off this ridiculous condition.  We could write a book couldn’t we?!??!?

Best wishes to you too x 

Permalink Reply by Ellen on June 11, 2018 at 8:33pm

Hello again!

It's been two months since I got off the Plaquenil.  Nothing!  No red bumps.  No hair falling out.

Had my eyes examined.  Perfect!

I couldn't be happier!

Ellen

Permalink Reply by Afraid on June 21, 2018 at 5:03pm

Ellen 

thats absolutely wonderful news!! Big hug xx

Permalink Reply by Ellen on April 26, 2018 at 4:45pm

Dear Afraid,

Yes, it’s a tough gig.  I thought I would be bald by now wearing a wig, but not so.

I have hope now.  Where would we be without hope?

Ellen

Permalink Reply by Afraid on September 29, 2018 at 12:53pm

Hi Ellen

how are you?  I was wondering how things are for you in the world of Ffa?  I remembered things were going well earlier in the year for you...is it still positive news? 

Best wishes 

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