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Question on scalp itching
Hi all! I was recently, 12/31/18, diagnosed with Graham Little Syndrome. I don’t fully understand the itching component of FFA. My sense is that most of the inflammation, redness, bumps etc. are located in the frontal area of my scalp, which is also where I’ve noticed most of the shedding. However, it seems that the itching of my scalp is more diffuse in that it’s all over my scalp in varying locations. Does the itching in the non-frontal locations mean that there are areas of inflammation and bumps in these locations too? And that the itching and inflammation in those non-frontal regions will eventually result in hair loss from those areas as well? Or is the all over scalp itching just a symptom that goes along with having FFA and not specifically related to the hair loss from the non-frontal areas.
Of course, since I can’t see the scalp on the back of my head in the same way that I can the frontal area, perhaps there are inflammatory follicular bumps there too!
I still have my brows and I believe that I’m in the beginning stages of FFA. My hairline has not yet receded and there is no visible scarring along my hairline. I’m anxious after having received the diagnosis. I’ve lurked in the forum and read so many of your funny, heartbreaking, informative posts. What is most disconcerting and demoralizing about the diagnosis are the lack of first person successful accounts of remission. For the first time in my life I have the feeling that this is something outside of my control and despite my conscientiousness/best efforts to seek the available treatments that, in the end, it might not make any difference in the progression and outcome of the disorder. Sorry for being a downer, I guess I just haven’t had much time to fully wrap my head around this and come to terms with all of it.
Replies to This Discussion
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Permalink Reply by pauliegirl on
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Jennifer, Appreciate your thorough and thoughtful post. You’re not a downer...your worried about the blow you’ve been dealt and we all get that. Sorry to welcome you to the club but at least there’s comfort and understanding AND the best part, hopefulness when we have some to share with each other. I was diagnosed exactly 3 years before you. After 3 years of this journey, here are what I believe are things that are working for me, with a quick disclaimer that autoimmune conditions (and I truly believe this is one of the many and growing number of autoimmune diseases) can impact different people in different ways, AND please note these things I’m doing have evolved over these YEARS since diagnosis so don’t be overwhelmed and think that you need to make all sorts of changes immediately...it is a process: 1) Go natural! I changed everything I put on my body head to toe. All skin care and cosmetics are now from a local herbalist. No chemicals. This includes sunscreen. Shampoo is decently ranked on the EWG website. 2) Dietary changes. Ooph this is a big one as it has really evolved. I do as much organic fruit and veggie as possible. I was doing only grass fed meat and pasture raised chicken and wild caught fish having discovered the autoimmune protocol diet in 3/2018. I am recently impressed by and following Dr Brooke Goldner green smoothie/healing protocol which is hyper-nutrition via mostly veggies and some fruit, and vegan. 3) Meds: I have been on the 20mg accutane protocol for 14 months. Please google the study from Poland on this. IMO it’s the best thing going for halting the progression of FFA. I have also been taking Actos 15mg daily for 12 months. I take a plethora of supplements designed to strengthen the immune system (I have another confirmed autoimmune disease since age 21. I am 51.) and strengthen the gut. It’s important to have a comprehensive lab work-up which includes Vit D and ferritin. I am weaning off Plaquenil which I started upon diagnosis. I had been on finasteride from 7/17 until appt spring of 18. I may have noticed some “baby hairs” from it but nothing significant so I went off it, BUT then there were posts here with promising outcomes on the finasteride so I went back on it 11/18. Some people use topical minoxidil...I use it oral as a treatment for my Raynauds and I’m pretty sure it brought a decent amount of my brows back! 4) Work on stress management. Yoga/meditation/tapping...whatever works for you.
After diagnosis my hairline was stable as far as loss though with some inflammation for over a year, but then flared and i lost a little more up top over a year+. Now it seems very quiet for about two months. Correlates well with the accutane but who knows it could be the Actos and/or dietary changes and supplements. Hate that there are so many variables but I am impatient to wait to see if each modality was working!
As far as other areas of the scalp itching, I have not experienced that; only front hairline, forehead and brows and ears. It would seem that if there is itching it is possible there is inflammation happening in other areas of your scalp. I think it’s important to have your trusted healthcare provider carefully examine all of your scalp so you know what’s going on there where you can’t see. I would do what I can to quell inflammation. After using topical steroid liquid often over 2 yrs I went off it and was using natural stuff like my custom combo of witch hazel, lavender oil and rosemary oil. Not sure if that worked but I liked not using the steroid. For these past 2 months the itching and creepy-crawly feelings are finally gone so I’m using nothing topically. So, a case of remission?? I hope and pray so!
I hope some of this helps. Blessings, healing and peace I hope and pray for you!
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Thank you so much pauliegirl for your thoughtful and detailed reply.
I will ask my dermatologist about Accutane and Finasteride. Currently I’m using: Doxycycline, Plaquenil, Desonide for my brows, Clobetasol, Rogaine, and Latisse. It’s my understanding that it can take several months to determine if Plaquenil is even working. Therein lies the difficulty with waiting months to find out if something is working or not, and all the while I’m shedding bangs and frontal hairs.
Have you noticed many side effects from taking Accutane such as dry eyes, peeling skin, emotional state, etc.? Does Accutane make the scalp dry and peely?
In regard to my diet, I have made significant changes. I no longer eat: dairy, sugar, flour, red meat or any type of processed food. I eat mainly anti inflammatory foods. Not sure how much the diet changes will help, but when faced with this diagnosis I’m willing to do whatever I can if there’s a possibility of it helping. Also, I’ve been mediating which is helpful in reducing anxiety and my catastrophizing thoughts about future balding.
Last week I had about ten inches of my very long hair cut off. Psychologically I think it’s easier to deal with because I no longer have to see the hamster sized ball of hair in the shower drain; but, of course, I realize that I’m shedding the same amount of hair. It just APPEARS to be less and this reduces feelings of anxiety.
I’m so happy for you that you’ve found treatment that is working for you.
Best regards!
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