Comment

Comment by Jules UK on February 28, 2014 at 8:51am

The steering group is a new initiative ie. it hasn't yet met! Dr Harries asked whether I'd like to represent FFA since I'd mentioned this forum. Right place, right time perhaps, I don't know why he asked me particularly. The group will be a consortium of clinicians and patients who treat alopecia in all it's forms in the hope of pooling information and securing funding. The first meeting is scheduled for the last week in April in London. Exact time and venue still to be confirmed.
Don't worry, just as soon as I know what is wanted from us, I'll get straight onto the forum for contributions!!

Comment by MJ on February 28, 2014 at 7:19am

Jules, what is the steering committee you are referring to? I really think that if the many details of our med histories were accumulated, a pattern or commonality would be identified. I firmly believe stress is a trigger. The two bouts of greatest loss for me were on the heals of high stress. When I told my first derm not a hair loss specialist) about my overuse of omeprazole, he gave me a list of drugs responsible for 109 common reaction patterns. Omeprazole was listed under Lichen Planus. Do not know if there is a link between LP and LPP, but I thought this was eyebrow raising. Also, one of the side effects of omeprazole is hair loss.
MJ

Comment by Polly UK on February 28, 2014 at 6:38am

Celia - are you still taking Lymecycline? My scalp feels much better since taking it but I'm worried what will happen when I stop. I've only been prescribed 2 months supply and I will run out soon. My derm said 2 months was the norm but if others take it for longer I could try asking my GP for an extra month.
Hope you all have a good weekend. We saw the NT digital War Horse at our local cinema last night and it was a truly wonderful experience. xx

Comment by Jean on February 28, 2014 at 5:36am

I wasn't born by C-section but have a leaky gut and other digestive issues.  In fact, I'm feeling really sorry for myself just now because I had a bout of ascending cholangitis (blockage of the bile ducts) yesterday and still feel pretty rotten today.  However, I had my hair cut like Julie Walters last week so notwithstanding the gut problems, I decided to embrace my extremely high forehead and go for a less-mumsy hairstyle!!

Very best wishes to everyone

Jean

Comment by Polly UK on February 28, 2014 at 5:10am

was born by C-section being placenta praevia which must have been a big deal in 1948. My poor mum had to spend 6 weeks prior to this in hospital!
I had bronchitis as a baby and still suffer with chest infections so always dread getting colds.
I have quite a few allergies and intolerances and take anti-histamines frequently and use steroid creams for skin rashes/eczema and steroid inhalers for asthma and rhinitis.
I had my gallbladder removed in my early thirties and my digestive system hasn't been right since. I have taken Omeprazole daily for up to 10 years but have cut down to a lower dose since finding out it stops the body absorbing some vitamins and minerals including iron.
My Ferritin was 30 six months ago and is now 60 following a course of tabs. I had problems for years when younger with low blood count and iron stores.
I don't handle stress well and had a near nervous breakdown following my Cholecystectomy. I was on diazepam for about 5 years but was eventually weaned off with professional help and haven't taken anything like that since.
Celia - looking forward to our meeting and I would like to discuss the various diets others are following and foods they avoid and also supplements. I definitely eat too many carbs and my glucose levels have been borderline diabetic for years which probably doesn't help with inflammation. Glad you approve of my new hairstyle lol x

Comment by claire on February 28, 2014 at 4:35am

This is really weird as I have to have a repeat blood test as my ferritin levels are very high! Saw my dermatologist yesterday and she is suggesting I try Mycophenylate mofetil an auto immune suppressant. Got to have more blood tests first though. Has any one tried these? Jules I'm interested to hear about the FFA steering group. Tell me more about it. I was by contrast a very skinny child when younger and late to develop. They said I had a high metabolic rate. What a strange bunch we all are!!

Comment by Jules UK on February 28, 2014 at 3:53am

I have no allergies, nor digestive problems. But was constantly anaemic into my 20s because of dieting. Also on tetracycline for years(!) to help with acne. Fat snd spotty - not a happy bunny... Still susceptible to stress, which I think has played a large part in aggravating my FFA.
I'm participating in a telephone conference on Mar 11 or 12 with the FFA steering group. I think it will be to discuss the format of the first meeting; I haven't heard yet. But there are many points which could be raised with clinicians, such as not taking a thorough medical history ( to our knowledge, anyway). X

Comment by Maddy, California, U.S. on February 27, 2014 at 7:00pm

I have struggled with my ferratin level for years as well! No allergies though, at least not that I know of.

Comment by MJ on February 27, 2014 at 6:41pm

Sally, coincidentally, I am taking slow release ferrous sulfate for a lower ferritan. My Biotin supplement contains 30 mg of zinc because my zinc was very low. Also, my endocrinologist suspects Hasimotos and has ordered further bloodtests in a few months.
MJ

Comment by sallylwess on February 27, 2014 at 6:02pm

I am always interested in how much those of us whom suffer from FFA try to piece together a common thread of medical and personal histories that might explain our disease.  I make notes and keep them in a file on my computer.  I am also interested to find that few doctors care to think about these common characteristics, nor do they seem care about searching for answers.  I am thankful that the researchers who care about those of us who suffer from FFA do care and are also collecting this data.

I have had a history of allergies.  I have many drug intolerances and allergies.  I was on Nexium for way too many years for acid reflux.  I was also on a heart arrhythmia drug called flecainide when I first noticed significant hair loss.  I have Hashimoto's Thyroiditis.  My doctor suspects that I have a leaky gut syndrome since I am continually fighting low ferritin level and low iron saturation levels.  

I currently am only taking thyroid medicines, an allergy medication, and Vitamin B12 and Biotin.  I also use Clobetasol on as needed basis.  I use it when my scalp is red or inflamed.  I think the hair loss is slight these days.  I was recently prescribed Avodart by a respected dermatologist.  I could not even believe that he prescribed this medication for FFA.  I refused to take it.  I am trying healthy eating, stress relief by doing restorative yoga, and I am trying not to get too down about the loss of my hair.  

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