Frontal Fibrosing Alopecia and medication/ food intolerances?

[REvansherb]

Hi I am researching a little on Frontal Fibrosing Alopecia for a patient of mine who is interested in whether there are any people who have this condition and also have glaucoma.

If so are you taking medication and which meds for this please?

Also does anybody take HRT and has this affected their symptoms/ presentation of the FFA?

Do any of you take nasal sprays for nasal congestion/sinus problems/hayfever?

Do any people with FFA have any food intolerances at all?

Sorry for all the questions but she is 8 months from diagnosis at age 68 and is wondering about a lot of things...

Maybe you can help by responding to this post.

Thank you all so much for your help.

[Countrygirl481]

Hello,

Yes I have FFA and also AA. I also experience debilitating neuropathy with it that has not responded to any pain control, including morphine. The disease damages the nerve ends as well as the other structures deep within the scalp. Like some others, mine was caused by my hairdresser leaving a perming lotion on my head for far too long while under a hot drier. The toxic chemicals caused a severe immune reaction. (I wonder if perming lotions are a general cause of this condition?)I think it's association is with other autoimmune diseases that, of course, are trigger by environmental exposures such as toxins, viruses and vaccinations. I have a number of them, including one that has an autoimmune component that has confined me to bed or home for more than 30 years. The root is a dysregulated immune system and early evidence of a tendency to develop this family of conditions is hayfever. Ultimately, it is a three-stroke problem: genetics (my grandfather died of RA), environmental trigger and timing. The trigger for my major initial problem was a tetanus vaccine and exposure to OPs and Organoclorines and perming lotion for the FFA. According to a medical trial in which I have been involved the immune dysregulation is caused by a gamma retrovirus that was accidentially created during vaccine and cancer research and manufacture. (Rituximab and anti-RVs are helping those who are able to gain entry to clinical trials.) Such scarring alopecias are also found in Lupus and HIV. I have not read of any assoiciation with eye diseases. I think it is best to start wearing a wig before the condition becomes too noticeable, although if you have the chronic fiery pain with which it can be associated, it is very difficult to cope with the exacerbation of pain they cause. I have been taking hydroxychloroquine for FFA, but it it hasn't helped and it can cause sudden blindness in about 4% ? of patients.

[Countrygirl481 in reply to Countrygirl481]

I forgot to make reference to 'food intolerances'. Yes, I have many of them but they are associated with my main problem and they have responded to pancreatic enzymes and the almost exclusion of milk (yogurt is okay ) and bread and similar products.

[REvansherb in reply to Countrygirl481]

Thanks so much for this full reply....very complex!

I'll pass on the information

[deejames]

Am I right in thinking you are looking for people with FFA AND glaucoma ?

[REvansherb in reply to deejames]

Sorry for delay.

Yes That's right....

[Carlaann]

I have FFA but not Glaucoma. Not yet anyway. I had lymphoma when I was a teenager and I am 46 now. Having been told that the condition is associated with the immune system I am convinced that it is caused by the cancer or chemo or both

[Stellenbosch]

I have FFA, diagnosed just recently. I am 72. I use a prescribed nasal spray every morning, for polyps in my nose, and lanzaprazole for acid reflux. I don't have any food intolerances. I understand FFA is an autoimmune condition. My mother had severe RA, which is autoimmune, and my son has ulcerative colitis also an autoimmune condition. I also have macular degeneration for which I take Viteyes 2 tablets. Hope this helps.

[REvansherb in reply to Stellenbosch]

Thanks for your help

I will pass on to my client

Happy Christmas!

[154emma]

Hi

I also have FF

[154emma]

Hi

I also have FFA

I don't take any medication

I don't have any diagnosed intolerances to anything

I'm only 47 and not started menopause

The only think I do have is a mirena coil. Nothing else,

I'm really confused about what I can do to stop it

[woollysheep in reply to 154emma]

Me too. I had the coil replaced May this year & ive recently noticed my hair is getting worse. As I understand it the issue is a hormonal one so surely a link ought to be investigated. I am keeping a menopause diary as I’ve had hot flashes in the last three months.

[Leeds64]

Hi, maybe the lady would benefit from joining the Facebook group FFA...there are over 600 ladies with this same condition in the closed group and she might have a more accurate response than with a one to one chat.