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Steroid injections for FFA
I am just back from my appointment with my derm. I wasn't expecting much, have been on Cellcept for 6 months with no change...no luck with Planquinil before that.
She was just back from a conference (in Aus) and was talking to her colleagues specialising in hair and they have been using steroid injection for FFA cases, cases where there hasn't already been a lot of recession in the hope of putting it into hibernation.
Well so I was a bit shocked at this point so forgive me if I am vague on details! I had heard of scalp injection for LPP but not FFA. So we did them there and then, about 5 injections where my activity was.
She said they discussed a technique where they inject as they are pulling the needle out so the steroid is more where it needs to be and not deeper in the scalp so less chance of skin thinning. The injections had a local in them as well. It wasn't a walk in the park but it wasn't that bad either.
I see her in 6 weeks to access the results and she said I may need one more, or maybe not, so I am feeling kind of hopeful. Something I haven't felt in a while.
She said FFA makes her feel a little helpless as all she could do in the past is throw drugs at it and see and was pleased to have an option that may mean an end to that.
We talked about sunscreen whilst she was injecting and she didn't believe there was any correlation to FFA at all.
So I am allowing myself to be a little hopeful on this one, just a little and wanted to share it here with you all. Of course I will let you know if I have any success. Fingers crossed.
Jacqui
Replies to This Discussion
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Permalink Reply by PamW San Diego, CA, USA on
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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 she has been getting shots, and feels that it has helped. She is in the beginning stages of the disease. Good luck!
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Permalink Reply by Jacqui on
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Thanks Pam I am keeping my fingers crossed but will probably only do it twice if I don't get results.
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Permalink Reply by Mattsmate on
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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.
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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!
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Permalink Reply by Classical Anne in NC mountains on
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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 disease -- I don't think anything will, simply because it's an autoimmune response. But I have no doubt that my course of injections has slowed the progression a great deal. The first year or so I kept comparing my loss with others' on this site [photos and descriptions] and felt confident that I was losing less, and more slowly than others. And was so relieved not to be adding any more systemic chemicals. My faith in the injections was bolstered the 2 times that I had to miss an appointment and went 4 months before the next. Both times I lost considerably more hair in that gap. But slowed way down again when I got back on schedule. I don't believe this is a "life sentence", because all reports of even the most horrific examples online say that it does eventually burn out. It just might take a bit longer to burn out with injections, but the progression is held back more acceptably along the way. And so much kinder to your innards.
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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 :)
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Permalink Reply by Halfbakedwho on
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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?
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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
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Permalink Reply by Minter on
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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" where the injections are given along with just getting steroids shot into my skull, plus it hurt :-( so I finally stopped the treatment. The way your doctor is doing the injections does sound interesting though, hopefully it will slow it down for you!
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Permalink Reply by illustr8r on
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Thank you the information! I waffle back and forth from do nothing to try something-anything!!! Right now all I use is Clobetasol but steroid injections have been offered too. I'm just sick of meds and tests I've waited to do more.
I was doing OK until a few days ago when I started to flare again and my scalp hurt and my face got new blotchy spots. It's just maddening and frustrating. I broke down in tears at the gym as I was sweaty and my head burned and it just got to be too much. When I'm flaring I get a weird pain/itch circle in the palm of my left hand. What is that?!? Stupid disease.
Anyway, thank you all for listening and for all of your helpful insights. We seem to know more than doctors do! -
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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 country who seem to know what to do. Hopefully this will calm down. So today, feeling hopeful. Please take care.
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