Comment

Comment by Debs on March 27, 2013 at 3:53am

STEROID INJECTIONS - has anyone that has used the steriod injections on the scalp had indentations that have now filled out and healed. Lots of ladies are reporting dents and marks on their skin after these shots - but do these dents go away after a few months??? I asked Dr Harries and he said it can take several months for the dents to heal but I would like confirmation from ladies that have used them. And OMG we now have 50 ladies in this group - we can reassure ourselves we are accessing info from all over the world in this condition.

Comment by Lorn. New York, USA on March 26, 2013 at 8:54pm

Hi everybody -
Chrisy - My doctor told me to stop using the desonide on my eyebrows because I have been using it for about 7 months, he didn't want to put me at risk for cataracts. I believe it has minimally worked for me (eyerows) as well as the shots - but at the moment, my dermatologist
has stopped the shots as well. My skin has thinned and has become rather dented, At the moment, I am taking 100 mg of doxycyc 2x/day and the 200 mg plaquenel 2x/day. I also put 5% minoxidil 2x/day on eyebrows and behind hairline and hydrocortisone butyrate topical solution behind the hairline 2x/day. Mentally, I feel better about stopping the shots and the desonide - at least for the time being. I think that this regimen has kept the hairloss at bay and some hair on the temple region came back as well as a little eyebrow hair. I see a dermotologist in the clinic in one month and the very specialized hair dermatologist in 4 months.

Regarding my eyebrows, I am taking Celia's advice and looking into tattoos. I thank everyone for their input.

I emailed Wake Forest and put my name on the list. I heard back from them - it hasn't started but they asked me for my info.

Comment by Caro UK on March 26, 2013 at 5:00pm

Rebecca I've just read your post. Very sorry to learn of your bad experience with the steroid injections. As your specialist said, once hair follicles have been scarred there is no possibility of hair regrowth from these areas. All that can be done is to try to reduce any inflammation in the remaining hair follicles. I am taking Planquenil and while I know that it may not work, I am encouraged by the knowledge that there is a 50% sucess rate. Rebecca I do hope your skin recovers in time and all the best for your further treatment.

Comment by Debs on March 26, 2013 at 6:02am

Rebecca, so sorry you have been through all those shots for no reason, very good news though that the plaqeunil has a 50% success rate and also that your derm in Berlin says that steroids (in the right place) can help. I think you should take photos of your scalp where this doctor injected in error and see if you can get some compensation from the health authority. Good luck with your treatment from now on.

Comment by Debs on March 26, 2013 at 5:59am

Heidi, as you have been diagnosed with FFA by a doctor in the UK I would suggest you ring Dr Harries receptionist to get a message to him and ask if you can do the study, if you give her your details she can action this and pop a survey in the post to you if he agrees 0161 206 1012.

Comment by Kath UK on March 25, 2013 at 6:22pm

Rebecca, that was very interesting about your specialist in Berlin saying he reckoned he got a 50% success rate with plaquenil. My dermatologist didn't give me any indication of success rate, she just said it would help the inflamation so it's good to get some idea of the possibility of success, even if it is only one doctor's opinion.
It's worrying that your local dermatologist may have given you the steroid shots in what was apparently the wrong place because as a patient you have to trust that your doctor is doing the right thing for you.
I hope your next lot of steroid injections work for you.

Comment by Simone NJ USA on March 25, 2013 at 6:09pm

Thank you Rebecca for sharing..hope your forehead heals very soon...xx

Comment by Heidi Short UK on March 25, 2013 at 12:47pm

Hi everyone, you have all been so busy its hard to keep up with all the conversations!
Sandy i have registered to the survey, I don't know if they will take me as I'm in the uk, but I'm sure my doctors will confirm the diagnosis!
Debs could I complete one of Dr Harries surveys as I'm not registered with him although I have had contact with him?
Its good to know there is some interest in this disease!

Comment by PJ - MN, USA on March 24, 2013 at 4:47pm

You can go under the settings of your profile and add on your location after your name, then save your changes. Then you don't need to type it in each time.

Comment by Simone NJ USA on March 24, 2013 at 1:35pm

Hi Celia:

I live in New Jersey, USA

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