Replies to This Discussion

Permalink Reply by DW on January 19, 2016 at 1:32pm

I am not from NC, but I have had a similar experience with the hair loss specialist I had been seeing in Canada. When I called to make my 3 month follow-up appt. I was told the doctor was no longer treating hair loss!? He now does only transplants and treats skin cancer patients. I don't think there's enough money in hair loss for them. My current doctor told me a lot of dermatologists won't see hair loss patients as they can't give them answers to solve the loss - they can't "cure" them (and people want answers and cures) and because it's an 'emotional' condition - it involves a lot of "chit-chat" (which I interpreted as "time is money"). I guess it's not worth their while. Sad.

Permalink Reply by ammie on January 19, 2016 at 1:45pm

Sorry to hear you had a similar experience. It's a little disheartening but I at least her PA will be treating me. I saw the PA during my first visit. She spoke to me before the doctor did and followed up with me by phone. I bet she was training to take over her patients at the time and they didn't say anything about the transition. 

Oh well. Somebody has to treat us, right? Glad you are in the care of another doctor. 

Permalink Reply by cbs1007 on February 5, 2016 at 2:47pm

I got this phone call too.  I was on Dr. Olsen's schedule for February 29th.  I would have been a new patient so I was especially distressed to get this call.  I've decided not to go to Duke just to see a physician's assistant -- particularly as this is my first appointment.  Instead, I'm going to Miami to see Dr. Antonella Tosti.  I've heard good things about her.  She has published many articles in the areas of alopecia areata and FFA.  If anyone is interested, I can let you know how my appointment goes.  I will see her on February 19th.  

Permalink Reply by ammie on February 6, 2016 at 8:08am

I met with her for the first time last year before getting the call from her office this year. The PA was there the whole time as well. Looking back it seemed like she was training her to take over her patients. I should have suspected something. 

Please let us know how your visit with Dr. Tosti goes. It's always good to know what other doctors say and what is their approach to treatment. Good luck with your visit. 

Permalink Reply by cbs1007 on February 22, 2016 at 11:38am

Hi everyone.  I wanted to let  you know about my appointment with Dr. Antonella Tosti at the University of Miami.  I saw her on February 18th.  I went to see her because a specialist at Johns Hopkins diagnosed me with a mild case of FFA.  He did not do a biopsy because he said he's seen so many cases he didn't need to.  He prescribed Plaquenil.  I went back to my local dermatologist who originally thought I had alopecia areata.  She conducted a biopsy and the results said "likely alopecia areata."  The local dermatologist felt vindicated and told me to stop taking the Plaquenil and to instead continue with Minoxidil and kenalog injections.  I felt caught in the middle and very confused.  From my perspective, my symptoms resembled FFA more than AA.   I decided to go to Miami to see Dr. Tosti because I know she is an experienced and well-respected specialist in the areas of both alopecia areata and FFA.  First, let me say that she was very kind, reassuring and took her time with me -- which was the exact opposite of my experience at Johns Hopkins.  Dr. Tosti said that yes, I do have mild FFA but -- and I quote -- "we can stop it where it is and probably improve with hair regrowth."  I took my father --- a doctor -- with me to the appointment because I was so nervous and he heard these words also.  She said to take finasteride once daily and to use tacrolimus on my hair line and eyebrows every evening.  She said it was very important to rub the finasteride into my skin for a period of 20 minutes.  She also said to use minoxidil 5% on the rest of the my hair because that will make everything healthier and improve overall appearance.  She said absolutely to discontinue the kenalog injections as they are not helping and are instead causing depressed areas in the skin.  Dr. Tosti also took detailed measurements and pictures.  I will return to see her in 3 months.  Also, I agreed to participate in the FFA research study where they are collecting information to try to understand the cause of FFA and the recent increase in cases.  I hope this helps.  If anyone has any questions about my experience, let me know.  

Permalink Reply by DW on February 22, 2016 at 12:37pm

Hi. Your appointment sounded promising. I also take finasteride but it is in the form of a pill. Is yours an ointment or lotion that you are able to rub it into your scalp?
I have also been receiving the kenalog injections and am shocked at the depressed and discolored areas I am exhibiting now along the edge of my hairline as a result. It feels like a ski hill with a bunch of moguls!

Permalink Reply by cbs1007 on February 22, 2016 at 1:07pm

Hi.  Yes, I take finasteride in the form of a pill in the the morning -- and then I rub the tacrolimus (an ointment) into my hairline and eyebrows at night.  Yes, the kenalog injections can cause a bigger problem than the hair loss, I think.  My father is a plastic surgeon and he says that if the depressions in the skin are really bothering you, you can have a plastic surgeon inject a filler and you should get a good result. He also said that the depressions can improve on their own after the injections are stopped.  What dosage of finasteride do you take?  

Permalink Reply by DW on February 22, 2016 at 1:24pm

I appreciate that information from your dad! I take a 5 mg tablet of finasteride daily. I was also prescribed Elidel and Lyderm to massage into my frontal hairline alternately 6 days of the week and then clobetasol on the 7th day to use on my entire scalp. I've only had the injections done twice, the first time was at the end of October and the second was mid January. When I started the meds I found my head became so itchy I could hardly stand it - consequently I have stopped the Elidel and Lyderm and only use the finasteride and clobetasol. To be fair though, I don't know if the itchiness was due to the meds or if that's just part of this whole disease. I did seem to get some relief for a period of time but I'm noticing more recently my head is getting itchy again and I haven't been taking the meds so I can't blame them this time.

Permalink Reply by cbs1007 on February 22, 2016 at 1:27pm

Thanks for your response!  I was told to take 1/2 of a 5 mg tablet daily so I'm going to check on that!  Good luck.  It helps me to be in touch with other people in the same boat. 

Permalink Reply by ammie on February 23, 2016 at 6:44am

Thanks so much for this update. It does sound like a promising visit! I like that she said they could stop it and improve it. When I first heard about this disease everything I read was along the lines of there wasn't much that could be done. But it sounds like doctors are feeling more hopeful. 

Did she tell you to alternate between tacrolimus and mioxidil? Or apply them at the same time? I was told to alternate. Did she advise to continue using Plaquenil? 

Permalink Reply by cbs1007 on February 23, 2016 at 9:56am

Yes, she seemed very hopeful.  And as I mentioned, I took my dad -- a doctor -- with me because I don't trust my own perceptions under stressful conditions.  He confirmed that she said "we can stop it and probably improve it."  

I was told to apply the tacrolimus every night at the hairline and on my eyebrows.  She emphasized rubbing in the tacrolimus for at least 20 minutes to make sure it is absorbed into the skin.

She said to use the minoxidil twice daily on the rest of the my scalp -- particularly the crown and sides which are the areas that typically respond better to minoxidil.  Two points she made about the minoxidil:  don't apply right before bed or else it can wind up on your pillow!  Instead apply with enough time for minoxidil to be absorbed before you go to bed.  Also, I was told to apply minoxidil to dry hair because if you apply it on wet hair it can be diluted.  

She said to stop using the Plaquenil as the research now shows that results from finasteride are better.  

Dr. Tosti mentioned the CARF conference in New Orleans in June.  I'm wondering if it's possible to obtain the proceedings from the conference?  

Thanks!  

Permalink Reply by Lo on February 23, 2016 at 12:07pm

I am going to this conference in New Orleans so I will definitely report back to this forum with the notes I take!  Promise!

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