Replies to This Discussion

Permalink Reply by KarenD on July 22, 2018 at 10:03pm

Hi Farrah,

Sorry that your doc is so blasé about things.  It certainly does not help when trying to figure out such an emotional situation.  I have been on Plaquenil for over a year now.  My dermatologist felt that it was safe and worth the risk.  The eye doc that I see for the yearly eye exams felt very comfortable with it.  I had my yearly physical with my internist last week and asked him if he thought it was safe and he said he has many patients on it and feels comfortable with it.  My thought is that I will try it for now after having 3 docs tell me they are comfortable with the risk vs benefit.  Giving the medication a try is what I feel I wanted to do as far as trying to halt/slow down the hair loss. I also understand those who don't want to take the risk of medications when there is no guarantee of results.  So hard to chose.  But having all my docs tell me they felt it was worth a trial helped me feel comfortable for now.  Good luck with your decision!

Permalink Reply by Farrah on July 23, 2018 at 12:14am

Thank you so much, KarenD for sharing your experience. It really helps! 

Permalink Reply by BubbaLu on July 23, 2018 at 9:39am

Jam,

i just started taking Hydroxyxhloroquine this week after the steroid injections had no real impact.   It is the generic drug for Plaquenil, I believe.   So far I do t feel any side effects but will monitor my eyes and blood to make sure I’m in a safe zone.   I am in my 50’s and not ready to go bald!   But, if the test results show damage to my body I will stop the medication.  I am willing to take the risk, eat healthy and get plenty of exercise.  

Permalink Reply by Kathy in Denver on August 30, 2018 at 9:56pm

I have been on protocol for 2 years now with no side affects. The progression stopped with in 2-3 months and and after a while I begin getting new hair growth around the scars which has really helped. The new growth has increased a lot in recent months. I know of two other individuals who take hydroxychloroquine for different autoimmune conditions, one for going on 20 years and the other for about 5 years. Both are doing great with no side affects. 

Permalink Reply by JAM on August 31, 2018 at 5:08am

Hi Kathy, what is Protocol?  Is this also another name for plaquenil. I must admit I do not have a team of doctors or other specialists as I have never needed in the past and at 63 years of age am a little concerned with being faced with constant visits to a GP who does not really understand the condition or the medication.  I am currently taking an amino acid to see if this will help, and am not sure if it is actually doing anything but as hair follicles grow at differing rates will need to give it time.  However my scalp continues to itch in spots but no noticeable inflammation.  Am about to head away on holiday for a month and if nothing noticeable has changed will pursue the options everyone is talking about.  Many thanks for your thoughts.

Permalink Reply by NancyinDenver on November 2, 2018 at 7:26pm

Hi Kathy in Denver-

I live in Denver too.   I am glad your FFL was halted.

I was diagnosed 3 months ago and have been getting steroid injections and taking doxycycline.   Just this week I have developed new tingling patches, though, and so my doctor is recommending Plaquenil.  

I was grateful to hear you have had a good experience with Dr. Sabrina Newman.  I am currently with Dr. Erin Wilmer at Kaiser but she is leaving town so I might try Dr. Newman if I change insurance here in January.

Thanks for all your posts on this site.  They were very helpful to me.

Permalink Reply by BubbaLu on November 2, 2018 at 8:00pm

I am in my 4th month of Plaquenil (generic) medication and my doctor thinks it is helping.   I do have less redness, however, my hairline is very itchy. I think because it is drying up.   I also believe I am experiencing new hair growth, time will tell.   I honestly believe this is the only thing that helps.   Steroid injections are a waste of time   I feel this is baby steps protocol for doctors.  

Permalink Reply by NancyinDenver on November 2, 2018 at 8:02pm

GTK, thank you!

Permalink Reply by Jennifer on January 6, 2019 at 6:02pm

Hi Kathy and Nancy,

I’m Jennifer. I also live in Denver. Was diagnosed last week with Graham-Little-Piccardi-Lassueur Syndrome, one component of the syndrome being FFA. It would be so nice to know other’s in my area who understands this disease. I’m also taking Plaquenil and Doxycycline with topical steroids.

I sent you both a friend request.

Thanks!

Jennifer

Permalink Reply by NancyinDenver on January 6, 2019 at 7:41pm

Hi Jennifer-

There is a support group forming in Denver through CARF if you're interested.  http://www.carfintl.org

http://www.carfintl.org/support/newly-diagnosed/

We are planning a first meeting for Sat, Jan. 26, probably in south Denver.

To join, email (don't call) CARF and tell them you want to be connected with the leader of our group, who is also named Nancy but lives in Wyoming.  They are short-staffed and slow to responding to phone messages but tend to reply to emails.   info@carfintl.org.

If you don't hear anything back from CARF, ping me through this site. 

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