Comment

Comment by Jen on June 3, 2014 at 12:50am

Hi Irene,

I have lost about 1.5 inches at the sides, more around the ears and about .5 inches at the forehead. I have been pulling my curly hair forward while wet and keeping in place with bobby pins until dry. It stays that way. People say that I look different but cannot really figure out what has changed.  I am not sure how long I can continue to hide it though since the hairline keeps advancing.  I was thinking of getting the sides covered with strips of hair like maybe sideburns pieces. I am not so sure how it will look though.

Comment by PamW San Diego, CA, USA on June 3, 2014 at 12:49am

Hi, Irene. I know how you are feeling right now - you are not alone. There is an organization called CARF, and They can recommend a dermatologist in your area who is experienced with treating FFA. I wouldn't spend a lot of money on doctors who don't take insurance, because there are many doctors who will take insurance and who know how to treat us, or who is willing to find out. The CARF website has the protocol for treatment and a lot of answers to questions you may have. Our group is a lifesaver for finding out the latest information.

Try not to panic. I thought I was going to be bald in a few months and I am coming up to two years with the disease and I am still able to hide my hairloss. Everyday brings another woman to Celia's group. Hopefully everyday will bring us closer to a cure.

Comment by Irene on June 3, 2014 at 12:05am

Just diagnosed with ffa. I keep thinking I will wake up and it is a dream. I am in NJ and looking for a good doctor. I am seeing someone in NYC but hoping to find someone closer and who may take insurance. I have an appointment to get a hair piece or wig. Just looking for friends and advice. Thanks. Irene

Comment by Celia on June 2, 2014 at 4:09pm

Jules - I'm afraid I cannot send this on as it requires me to use WORD which we currently don't have on my laptop !! Sorry !

Comment by Jules UK on June 2, 2014 at 3:41am

Calling all UK ladies! Would anyone be willing to complete a trial questionnaire for the hairloss steering group please? Debs and C have kindly completed theirs but I still need another 3 by Thursday. This questionnaire is the lynchpin of the whole process to secure and direct funding so it's important to get it right. The group has decided to limit it's work to the UK.
If you're able to help, please would you send me your email via a friend request and I'll email the questionnaire to you. It can be anonymous.
The more FFA sufferers who take part, once the questionnaire has been approved, the more chance of research being directed in our favour!
Thanks, Jukes x

Comment by Jules UK on June 1, 2014 at 5:10am

Thanks Anne. That really is food for thought. I'm sorry you have suffered with all these problems but grateful for you passing on your knowledge. I've only had cystitis twice before and have always needed antibiotics to clear it. I think you're right that Piriteze is masking the symptoms since it's still slightly lurking in the background. X

Comment by Classical Anne in NC mountains on May 31, 2014 at 3:12pm

CONTINUATION

For any of you ladies who have frequent bladder infections, I strongly recommend insisting on a urine culture [not just a urinalysis] to determine if there is any live bacteria causing an infection.  If there is not, please DO NOT take broad spectrum antibiotics "just in case".  By all means, take over the counter [or even prescription strength] antihistamines, and also Phenazopyridine [brand name Pyridium] or others that color the urine bright orange, in order to calm the bladder.  [One of my other prescriptions turns my urine bright blue!  But it has no effect on the IC disease, just helps control the symptoms.] 

Sorry to have gone on so long with this, but as we all now know, when susceptible to one autoimmune disorder, we are susceptible to many others.  I would hate for Jules to feel 'cured' of the bladder issue through the use of antihistamines.  There may still be infection lurking.  And on the other hand, if the symptoms keep returning, you need to be certain that there IS infection before you start taking multiple antibiotics.

Whew!  Off my soapbox now.

Best wishes to All,

Anne

Comment by Classical Anne in NC mountains on May 31, 2014 at 3:11pm

Jules & all, there's a good reason the cetirizine [generic for Zyrtec, Alleroff, Piriteze] seemed to work for your bladder infection.  But you'll also need to remain somewhat vigilant to your bladder's cues. 

One of my most difficult autoimmune diseases is Interstitial Cystitis [IC].  It was diagnosed 17 years ago, though it evidently began sooner.  Throughout adulthood I suffered with chronic bladder infections, as many as 6, 8, 10 a year.  As a result, I was prescribed way too many antibiotics, developed allergies to some, total resistance to others.  It is thought this may have contributed to my developing IC, in addition, of course, to my susceptibility to autoimmune disorders, including FFA. This goes to the Discussion thread that Anne Louise began about the use of antibiotics.  I just hadn't gotten to writing it out on that one, but feel compelled to now, based on Jules' current problem.

The result is a sort of laceration of the bladder lining, with intermittent minor hemorrhaging. The symptoms are very much like what most people call "cystitis", i.e. a bladder infection.  Except in IC the discomfort never leaves, there is NO infection, and no cure.  So there won't be that tell-tale proliferation of white blood cells in your urine.  And in fact, a urinalysis will show nothing, and a urine culture will be totally inconclusive.  The only way IC can be diagnosed is by cystoscopy with hydrodistension.  Don't need to go into that.

But the important common factor is that the physical symptoms of urgency, burning, etc. are caused by a histamine / mast cell overreaction.  So any antihistamine will calm your bladder down [but of course, only temporarily with IC].  I have been on 100mg hydroxyzine antihistamine [brand names Vistaril, Atarax] since 1998, and still have considerable break-through pain, for which I take many other meds. 

The benefit of that strong and constant antihistamine is that I think it has spared me the relentless itching scalp which is FFA's histamine reaction.  [not to say my head never itches, because it does fairly regularly, all around the active areas, but not to the same degree some of you seem to experience, particularly PamW I think].

Yet taking all that antihistamine so long obviously did not spare me developing FFA in the first place, as that is a fairly recent development [diagnosed 10 months ago].  Which confirms [in my mind] that the histamine reaction is a symptom, not a cause.

By the same token, Jules, you need to be aware that taking antihistamine for a bladder infection, you may be eliminating the histamine reaction, and therefore eliminating the symptoms.  But you have not necessarily eliminated the infection. [to be continued] ...

 

Comment by Jules UK on May 31, 2014 at 2:03pm

Thanks, C! Would you just email it back to me as an attachment please? Sorry, I should have said. There's another telephone conference on Thursday and I think we'll be discussing the pilot survey and people's responses to it.
By the way, I had a bout of cystitis this week and rather than opt for antibiotics as I've always had to before, a friend recommended Piriteze. It worked! So I'm going to take it regularly now as I think some of you do already. X

Comment by Maddy, California, U.S. on May 31, 2014 at 12:52pm

MJ, I had surgery (not real minor either) in early March and had no flare-up of my FFA. My surgeon had me take Arnica and Bromelain a few weeks prior to and after surgery (and had me stop all other supplements) to reduce the inflammatory response. It worked wonders for me.

Jean, That is interesting about your reduced capacity to fight infections. I posted a long post under the topic "Could Antibiotics be a Trigger for FFA," regarding the fact that I was recently diagnosed with Common Variable Immune Deficiency," Subclass 2 and 3 deficiency...which my doctor indicated could, at some point, make me have a reduced capacity to fight infections. So far, it hasn't, because my other two immune systems (subclass 1 and 4) have been compensating, but at some point that will probably stop. 

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