Rogaine, clobetasol, plaquenil or steroid injections?

Okay so after reading a vast amount of your blogs I have come to a conclusion. It seems there is no simple answer as to what works best for people suffering with FFA. I started using Rogaine back in February 2013. This was before my doctor started treating me for FFA. Once I had seen my doctor she put me on Clobetasol cream. I know Rogaine take about 5 to 6 months too see any results. I just noticed a few days ago that I started getting very small hairs growing mostly on the sides of my head.

So here is my question. Do I continue with the Clobetasol cream once a day or do I go back to Rogaine. It has been a month since I stopped using it. I have read on some of your blogs that mens Rogaine works better. I know when I see my dermatologist in October she wanted to start injections. The Plaquenil meds scare me the most. Side effects seem scary. What has worked best for anyone out there?

Also I have heard many people talking about itching and burning. Is this from the medication or FFA? I used to have an itchy scalp which my doctor had given me shampoo's to use. Now that I have FFA the itching has stopped. I believe this is all part of the condition. It seems you get the itching and scaling first than FFA. Oh well. Does anyone have any advice?

Still Hopefull.

Views: 4701

Comment by zoe on September 12, 2013 at 3:04pm
I get the injections and I've noticed I have giant dents in my head from the shots. I'm almost sure my dermatologist said they would go away but I got my first shots around April? And u still have tons of debts in my head, they're not noticeable unless I like take a shower and all my hair is slick to my head, it's just weird. But I am getting 100% positive results in the injections!
Comment by mycurlyhair on September 12, 2013 at 3:08pm

I agree with you on the allergies! Only change in getting a doctor to believe that would be a holistic doctor. I have LPP and believe for me it is brought on by mold and then followed the allergies. My daughter and I both have similar issues once we moved in this house. I moving in a few weeks and hoping to see some changes. LittleRhody, I can send you a link (anyone else with scarring alopicea) to a private facebook page with over 100 members where we discuss meds, causes, etc....Great info and support!

Comment by Starr on September 12, 2013 at 3:19pm
Ellyn - everything I had read stated that with AA there was little or no pain, so I was unprepared for the amount of pain or the intense itching, especially during hot weather or during stressful conversations. I am spending more time in deep-breathing exercises and water aerobics, meditating, keeping a gratitude journal. I think it will help. Thanks, Andrea and Ellyn, for sharing your experiences.
Comment by Gabe on September 12, 2013 at 3:48pm

What is LPP?

Comment by mycurlyhair on September 12, 2013 at 3:58pm

Its short for Lichen planopilaris, LPP/FFA are similar.

Comment by Gabe on September 12, 2013 at 4:06pm

I have never heard of that, thank you

Comment by Dorothy on September 12, 2013 at 5:35pm

Honestly, in the beginning several things were tried and nothing worked for me, so you have to decide what if anything is or will work for you. The only thing that ever produced results for me was mega doses of thyroid meds and I was living in Holland at the time and I can not get a USA doctor to give me high enough doses to replicate, so I am stuck. I do not subscribe to one fix for all.

Comment by Lauren A Engle on September 12, 2013 at 6:39pm

I have had allergies my whole life. I say that because when I was 3 months old I had excema and the Dr. told my mom that I would have asthma and many allergies throughout my life. Im Thirteeen now and he was right. I got AA when I was three and a half years old. We always thought there was a allergy connection because it came and went with the seasons. My mom never tried any AA treatments because I was already maxed on steroids for asthma I suppose. To get off them I did allergy shots. And my hair grew back..I know right! Gymnastics season started up and we couldnt do the shots. Hair fell out..Season over and time to train again resumed shots..hair came in. What do you all think? Im quite sick of Dermatologist etc. telling me coincidence when this happened 3 times!
Im thirteen and I want some hair even for a little while would be cool. What does it matter to them anyways.

Comment by fijifrangipani on September 12, 2013 at 8:23pm

I have lived with alopecia for almost 35 years now, from small patches to being totally bald. Having gone through all the treatments, Regaine, minocidil, steroid injections, all when I mostly had patches I still ended up completely bald. Knowing what I know now, if I could do it all over again I would not touch any of those drugs at all. They served no purpose in the end. My hair has grown back a few times, but not when I am on treatment of any sort, and it falls out again the same way. Fine hair growth does not guarantee it become real hair and grow back. I know it is hard as I was 13 when my hair started falling out, the worst time for a pubescent teen, and have struggled with how I look and my feelings of devastating loss.. but I made the call to be bald and am now happy in my own skin. I dont even think about it any more. I know not everyone may agree but now I would advocate against any treatment. If you are suffering from a diagnosed auto immune problem as well, then even more reason not to bombard your system with drugs. I know not everyone will agree, but having tried so many alternatives and spent so much money of specialists and treatments, I know really wish I had never gone near the drugs. I find meditation, yoga and massage a lot more healing.

Comment by sallylwess on September 12, 2013 at 10:42pm

What is FFA? Is that Frontal Fibrosing Alopecia?

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