Jacq
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  • SA
  • Australia
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Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Hey Susiewoo good luck at your appointment today. I wonder if your immune system would attack the transplanted hair like it does the natural hair?  Let us know how you get on. :)"
Tuesday
Susiewoo replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Hi Jacqui, Iv had FFA for 16 months and have tried numerous treatments which havnt really worked. I am taking Hydroxychloroquine 2x daily and steroid foam every other day. I'm going to see my dermatologist today and was going to ask about a…"
Tuesday
Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Oh Jo I am so sorry to read this. Yes you are gorgeous dents or not. My derm only thought I would need one or 2 sets on injections so will interested to see in 6 weeks what we chat about. I must say I had had no discomfort at all, nothing, I small…"
Tuesday
Jo replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"I did the hydro cortisone injections about 6 times.  Sadly for me I now have what appears to be dents in my scalp, yep it reminds me of a worry stone, that same smooth dent that I seem to fit my finger tips in quite nicely.  Bummer as of…"
Tuesday
Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Me too. I was all set at this appointment to say "I will give CellCept 6 more months and then that's it" but my derm was excited about trying something else it took me by surprise!"
Monday
Halfbakedwho replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"I get strange itches too. Mostly exzema that comes out of nowhere - on my forehead, around my lips and especially around my eyes. This has gotten worse in the past couple of months. I am just relieved that I am going to see the only people in this…"
Jun 18
illustr8r replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Thank you the information! I waffle back o.and forth from do nothing to try something. right now all I use is Clobetasol but steriod injections have been offered too. I'm just sick of meds and tests I've waited to do more. I was doing OK…"
Jun 17
Minter replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"I also got steroid injection treatments about 5-6 different times, but to be honest I have no idea if it slowed the progression down or not and eventually I started worrying about the thinning of the skin and possible "dents or hollows"…"
Jun 17
Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"It's so hard to say as many derms do many different things.  Planquinil seems a common first point of call.  Good luck with your journey and  this is a great group for support x"
Jun 17
Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Oh thanks for the info.  Yes my derm feels helpless that all she can do is throw strong drugs at me so maybe injections and thinner skin is better than some of the drug side effects.  Good to see you have results from them :)"
Jun 17
Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Yes she mentioned the skin thinning but explained by injecting on "the way out" would help with that.  i will only give it a couple of goes for this reason and hey they are injections on your head yikes!"
Jun 17
Jacq replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Thanks Pam I am keeping my fingers crossed but will probably only do it twice if I don't get results."
Jun 17
Halfbakedwho replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"I am just beginning this journey and don't have a dermatology appt till the end of July. I really don't want systemic medicines if possible either. I wonder what will be the first line of RX?"
Jun 16
Classical Anne in NC mountains replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"Jacqui, I'm glad to hear you started the steroid injections.  I have had them for almost 4 years now, and have always been pleased.  I get 15 to 20 injections, on average every 2 months.  No, it has not totally stopped the…"
Jun 16
Mattsmate replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"My derm backed away from them because she said that she was not seeing much effectivity and eventually the skin thins in that area due to the steroids."
Jun 16
PamW San Diego, CA, USA replied to Jacq's discussion Steroid injections for FFA in the group Frontal Fibrosing Alopecia
"When I was first diagnosed, I had steroid injections every 6 weeks. I did it 3 to 4 times, but discontinued because I had been told by a dermatologist that he didn't think it would help. However, I have a friend recently diagnosed with FFA and…"
Jun 16

Profile Information

Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (2 comments)

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At 11:06pm on September 15, 2015, LeslieAnn Butler said…

You will find a lot of support here!

At 7:37pm on September 14, 2015, LeslieAnn Butler said…

Hello and welcome!

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