Comment

Comment by April on November 15, 2013 at 3:04pm

Pam, are you talking about UV laser treatment? I am currently undergoing the treatment for FFA. The nurse treats the first few inches of hairline. I am on my 16th of 20 treatments. I have lost little to no hair at the hairline since I've been on the treatments. Also, little wispy hairs are growing in along my hairline. The affected follicles no longer look red and enlarged. The scarred area I have has not filled in though. I do no other treatments. I eat a primal/paleo type diet. It seems maybe it is stopping the progression?? Hard to say 100% but it seems to be working at least at the hairline. The rest of my head still itches and it seems my hair is thinning. Does FFA affect the whole scalp or is this a separate issue? Anyhow, laser may be worth a shot.

Comment by Betty on November 15, 2013 at 12:56pm

Celia, thank you for the warm welcome. I am still in the shocked stage right now and just trying to come to terms with what may come. 18 months ago My hairdresser found a small pea sized bald spot on my right temple. I didn't worry about it too much but did go to the dermatologist who said it was AA. I still was not overly concerned at this point and we did the injections. Nothing happened and the spot got to about the size of a nickel. At that point I did start to worry about it a bit. I moved to a new state and my new Derm thought it was time for a biopsy. I had the biopsy last week and it came up with LLP and FFA. Fortunately she took a rather large biopsy and so basically it was like a mini scalp reduction and the spot is pretty mush gone lol. Now I am just trying to figure out what is next and what I can do to prevent this from progressing. I have no issues with body and facial hair and haven't shown a rash though there was (and is) some itching.

I also have IIH (Idiopathic Intercranial Hypertension) and fibromyalgia.

Comment by Celia on November 15, 2013 at 11:19am

Welcome to newcomer Betty.  Sorry you have FFA, but we hope you will find this forum helpful to you.  I wonder what your story is, I couldn't find you anywhere - I hope you're able to navigate this - it isn't difficult and if you read back ( there's loads !) there is a lot of information that might be of use to you.  Best wishes.

Comment by Debs on November 14, 2013 at 4:16am

Pam, I am seeing Dr Harries and I am using exactly the same drugs as you.  I am taking both the doxycycline and hydroxy for 6 months then have to go back to be reassessed.

Flu jab - I did ask about this.  I was told that it is OK to have a flu jab with these drugs.... BUT I have decided I am not going to have the flu jab because I don't want to stimulate my immune system as it is in overdrive already.  I am also not going to renew other vaccinations when they lapse ... I will have a few essentials but the ones I keep up to date in case I travel to tropical destinations I will not renew.   For the past 20 years I have kept all my vaccinations up to date and this has been everything; yellow fever, typhoid, diptheria, hepatitus etc.. so I think my immune systems needs a rest especially  now I am autoimmune.

Comment by Pam on November 13, 2013 at 7:07am

I saw Dr Harries last week, who prescribed doxycycline antibiotic for me, two tablets twice a day, as well as keeping on taking the Hydroxychloroquine, plus Dermovate scalp solution, as it is stronger than the Synalar gel which I have previously been using. Feel fairly depressed that I am just taking more and more drugs, and the hair loss doesn`t seem to have improved at all. Now I am scared that if I stop them it could get worse!

Interestingly I also went to see a trichologist locally in Evesham, Sally-Anne Tarver, who says she is seeing more and more patients with this condition - she says that she reckons it is far more common than people think. We also discussed the possibility of laser hair treatment for this condition -  it could perhaps be a suitable topical treatment - has anyone had any experience of this?

Comment by Maddy, California, U.S. on November 12, 2013 at 4:14pm

I think the triggers for this disease are different for everyone. For me, the flu shot always makes me have a big hair shed. I had Influenza, BAD, in 2006...and afterwards, started to notice a bit of thinning around my temples. The next year, I decided to get my first flu shot (2007), and that was my first MAJOR hair shed...lost most of the hair from my right temple. Then, nothing for a year. The following year, 2008, got another flu shot and lost most of the hair from my left temple area and the rest of my right...then nothing for the rest of that year. I got one final flu shot in 2009, and that is when I started noticing a lot of thinning around the top of my hairline. I have not had a flu shot since on the recommendation of my endocrinologist. She believes that is my trigger...or, at least, one of them. I am going to see an immunologist in a few weeks to discuss this with him...and also to find out about the Shingles vaccine. I'd like to get it, but am so scared that I will have no hair left.  Ugh. Again, I think this all varies from person to person though.

Comment by Polly UK on November 12, 2013 at 3:30pm

I had my flu jab a few weeks ago because of asthma and heart problems. My derm said it was more important this year as Hydroxychloroquine is a mild immunosuppressant. He also said that it's live vaccines to be wary of and the flu vaccine is not live.

Comment by Alice on November 12, 2013 at 3:03pm

I have had pneumonia in the past. so always get a flu shot.  My thinking is that I'd rather give my immune something "real" to fight, instead of my hair. 

Comment by sammi on November 12, 2013 at 2:38pm

Does anyone know if it is okay to have flu injection I usually have it every year but I'm worried it may compromise my immune system? I wondered if anyone has mentioned to their derm. as I did read something a long time ago regarding side effects?! best wished Sammi

Comment by christiekd on November 8, 2013 at 5:39pm

Hi All!  I watched the Youtube video about autoimmune disorders and digestive issues - leaky gut syndrome.  I have been diagnosed with IBS and have had pretty bad digestive issues for some time.  I have been toying with changing my diet, but haven't done it yet because it seems too difficult right now since I have a husband and 3 kids.  Preparing separate meals for myself always seemed a bit daunting.  However, after doing some research on "leaky gut", I think I am going to give my diet a much needed overhaul.  I just read the book "Digestive Health with REAL Food" by Agalee Jacob.  It does an amazing job of explaining all sorts of digestive issues and the link with autoimmune disorders.  So, here we go.  Will let you know how it goes.  It would be nice to feel better and help both my issues - digestive and FFA.  I'll keep you posted. 

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