Comment

Comment by Jean on September 19, 2014 at 2:36pm

Hi Jules

I've also completed the questionnaire - hope something positive comes out of it!

I've got your informative fact sheet but would be really interested in your experience (and that of others) on the best place to get the toppers, please.  I've got a couple of wigs for when I REALLY need them but the toppers could be a good intermediate for now.

Many thanks

Jean

Comment by Jules UK on September 19, 2014 at 2:21pm

Thank you Meme. That's great! Apparently, it's got off to quite a slow start..... But I've just heard that CARF have signed up as partners. As well as other major organisations, like BAD. Perhaps some of the issues raised here might provide questions for the survey, if enough of us contribute , such as the efficacy of steroid injections.
I'm still not brave enough to go for injections and considering following Debs by leaving off meds altogether.
Off to Spain on Monday - I'll put the hairpieces through their paces with the heat and the pool!
X

Comment by Meme on September 19, 2014 at 1:54pm

Hello Jules

Have just filled the questionaire in,

Comment by Debs on September 19, 2014 at 1:09pm

Dear Catherine, i am delighted to read your post. can you give us all the link to the study, i have not seen any studies that show a 97% success rate for steroid injections or any other drug. All
Studies i have read mention using injections but have not achieved much of a result even when combined with other oral drugs.

The atrophy that can happen made me decide against this treatment, my derm does use steroid injections but was not seeing results at his clinic that made it worth me risking being left with dents. I use retinol on my face, for wrinkles and it does fill out shallow wrinkles however it would not fill in very deep dents.

If the clinicians that published this data have a technique that differs from other derms or are using a different type of steroid to inject then we could have a viable treatment for FFA.

Any more info on this study would be much appreciated.

Comment by Spenser on September 18, 2014 at 8:18pm

Missouri members: is anyone going to some of the Bald Girls Do Lunch events in Missouri Sept 24-28? The details are here . Thea will be at all the events. I have relatives all over the place so I try to meet her when I can.  It's also posted at http://www.baldgirlsdolunch.org

Comment by Classical Anne in NC mountains on September 18, 2014 at 6:20pm

Actually, I am my dermatologist's FIRST patient with FFA.  She knew nothing about it when the biopsy result came in, but she looked it up on the internet and then suggested the injections.  I know that sounds scary risky, but I trusted her and it has worked well. I believe she may have used steroid injections for some other condition in her specialty.  If you like your derm, it wouldn't hurt to ask.  Mine is one hour away, I'd hate to drive 3 or 4 hours every 6-8 weeks.

Comment by Annie on September 18, 2014 at 3:09pm

I'm also considering steroid injections.  The topical / plaquenil combination hasn't helped with the irritation & hair loss as much as I'd like.  I am thankful for any improvement, but I think it's time to take the next step.  My doctor has never mentioned injections, so I doubt he'll be able to administer them.  I live in southwest Missouri.  Can anyone recommend a doctor in this area?  I'm about 3 hours from Kansas City & a little more than 4 hours from St Louis.

Comment by Catherine on September 18, 2014 at 1:02pm

Dear Anne,

Thank you so much for all this information! It is so kind of you to share your experiences with me. I am now quite keen to give the injections a go, but need to find a doctor experienced in administering them. It is good to know that the atrophy can be combatted with Retin-A cream.

I will keep you posted! Thanks again for the encouragement!

Hi Terry I am sorry to hear that your FFA has flared up again. I really empathize. It is the most frustrating, relentless condition... I am looking into wigs too. Not easy to accept, I know! Will let you all know how things go with the injections. C x

Comment by Classical Anne in NC mountains on September 18, 2014 at 10:49am

Catherine, I haven't commented in a while, but if you could do a search on my name or steroid injections, you'd find I have praised them many times, yet continue to be in the distinct minority.  Because of a very large group of other chronic diseases and 13 daily prescriptions, several in multiple doses, I had to refuse any other medications.  My derm assured me the steroid in the injection therapy is totally non-systemic and would not interfere with any of my other issues or have any build up or lasting effects anywhere in my body.  Therefore it has been the ONLY medical treatment I have had since diagnosis about 15 months ago.  And I have said repeatedly, my hair loss sounds minimal compared to other ladies' stories.  The angry, itching follicles are totally under control, though I'm not saying they never ramp up and annoy me.  My hairline continues to recede at such a slow pace that neither my husband nor my derm can actually see any difference.  Of course, I do -- because like most of you, I can't help sticking my forehead right up to the mirror and studying it!  But again, the loss is there, but absolutely minimal.  And because I'm following no other treatment, how could I not praise the injection therapy?

Some ladies are concerned about the discomfort, and I want to emphasize that's what it is: discomfort, not pain.  Each treatment takes about 5 minutes and includes a dozen or more injections, with a teeny tiny needle.  Of those, maybe 1 or 2 cause me to wince for a moment.  Rarely have any continued bothering me by the time I get back in the car.  But there is the occasional one that may sting for up to an hour -- that has happened only twice in my experience.  Surely we're tough enough broads to handle that!

Another concern is that "dents" in the forehead skin may follow, [essentially skin atrophy].  Yes, I developed one dent, eventually about 1/4 inch wide and almost 1 inch long, coming diagonally from my receded hairline down my forehead.  I thought it was a little weird, but easily covered with wispy bangs.  Now here's the GOOD NEWS: a few months ago I asked my derm for samples of Retin-A, which she was happy to give me.  I started applying it to my forehead several times a week at bedtime, and within a month the dent was nearly gone!  Added benefit, so were the wrinkles!

Conclusion: I see no reason why anyone should refuse steroid injection therapy.  Go for it, Catherine!  I hope it will work wonders for you.

Comment by Jules UK on September 17, 2014 at 5:31pm

Hi Terry, thanks so much for doing that! The results of all the completed surveys will be collated after the closing dat of 31 October. Then the 10 most frequently mentioned topics will be identified. Part of this process will be a series of workshops where, I understand, willing participants will be invited to help with this process. That may be when you here something more. I'm sort of getting to grips with this step by step...... Apparently, it's a tried and tested process that's been used successfully for other medical conditions to secure research funding.

Please, please, if you haven't already done so, have a go at the survey!!

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