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GA for 34 years

Posted , 6 users are following.

Embalmiwill
Embalmiwill

Hello. I am 45yrs old. I have had GA now for 34yrs.  It first showed up when I was 12 yrs old on the top of my foot. Over the years it has come and gone, I have been treated with a year of Biaxin antibiotics, steroids, creams, burning, freezing, and recently light therapy.  All with no change. 

At first I just had them on the tops of my feet, back of thighs, and my abdomen. Occasionally one or two would come and go on my arms.

I had weight loss surgery a year ago and about 5 mos after the surgery I started noticing more spots and they were becoming redder and had extreme itching.

When I had my surgery I started a regimn of vitamins. I also started Biotin for my hair and nails.  I am trying to figure out what has caused it to do this. 

I saw the dermatologist and she had me start light therapy twice a week. The GA exploded after starting the light therapy and now I have it on the same spots as before plus the front and back of both legs, my buttocks, my elbows (front and back), under my breasts and in my arm pits. My dentist even found one on the roof of my mouth during my dental exam.

I have since stopped the therapy and the biotin.

I have osteoarthritis, asthma, osteopenia.  I am not diabetic. I am a non smoker, non drinker. I had high blood pressure until the surgery and am no longer on meds for that.

I am finding myself getting depressed over the new spots. I have always been able to hide the spots until now, they are spreading down my arms towards my wrists. I also put so much time and effort into the weight loss for my health but to also show off my new body and to be sexy for my husband now to just to feel like I want to keep myself covered.

Has anyone else had problems with the GA getting worse after light therapy or after starting vitamins?

Thanks you for "listening" and for being there and understanding. It's hard to explain this feeling to others who have no clue what its like to have GA

** Also , I have been told all these years that GA is not hereditary but my 22yr old son has GA on his ankle.  Does anyone else have family members with this?

 

0 likes, 10 replies

10 Replies

  • FrenglishCarole
    FrenglishCarole Embalmiwill

    Posted

    Hi there,

    I am sorry to hear of your constant battle with GA- mine started a menopause - trying to figure out what causes it but like you, my first spot was on my left ankle and now on both legs, back and front, buttock and arms. I hate it. 

    I eat healthy, exercise 5X/week and otherwise am healthy apart from toe and leg cramps. I refused the steriod treatments and other recommended by doctors but had a hair analysis done and found out I had high level of mercury which might be one of the problems. All these problems might be due to our digestive system, leaky gut?? not sure - this is what I am investigating now.

    I'll keep you posted,

    Hang in there, a solution will be found.

    Cheers,

    Carole

  • Embalmiwill
    Embalmiwill

    Posted

    Thank you Carole for your kind words.   I too am sorry that you have to deal with this disorder.  

    I am interested in hearing what you find out about leaky gut.  I have suffered from Irritable bowel since around the same time this disorder showed up. However IBS is something that runs in the females in my family and none of them have GA.

    I have an appointment in February with a new dermatologist that is suppose to be one of the top ones here in my area. Will be interesting to see his thoughts. I will keep you updated.

    Michelle

    • FrenglishCarole
      FrenglishCarole Embalmiwill

      Posted

      Hi Michele - and Maryliz - let's keep in touch as we explore this disease. 

      I truly believe it has to do with our digestive system.

      Good luck to us,

      Until next time

      Carole

  • Maryliz
    Maryliz Embalmiwill

    Posted

    Hallo to you both - I have just received my biopsy result yesterday and it is GA.  Steroids have been recommended but so far I am not sure.    GA started last June after the shock of my close friend dying.   I am a Coeliac (gluten free) for past 24 years so it cannot be that - I have started drinking lactose free milk.  I also take an anti histamine tablet which helps me sleep but also stops insect bites on my frequent 3 mile walks (spring and summer).    The GA started on my knees and elbows and then went under and around my arms - symmetrically.  It is still there but seems less red.    Sometimes I get intense itching too - I have a strong feeling it is diet related - although for me I know it is not gluten/wheat.    I will look up gluten/wheat in my lotions and potions but I have been told gluten cannot be ingested via the skin.      Please keep in touch and hopefully we can solve this very upsetting condition.    
  • Embalmiwill
    Embalmiwill

    Posted

    ***UPDATE**** - So my dermatogist started me on 2 new meds to try.  Plaquenil and minocycline together for 3 months. He said patience... and that it might take a full 3 months to see anything.  *sigh*

    Has anyone else taking this medication duo?

  • Tiggy
    Tiggy Embalmiwill

    Posted

    Hi Embalmiwill

    I have had generalised GA for 7 years (since the age of 46) with gradual deterioration especially in the past 6 months.  It is gradually affecting my self esteem although I try not to let it. It began with 2 large annular circles on my abdomen and one on my shin. I did all the usual things and treated myself for ringworm and used steroid creams etc. Two years ago I had allergy testing in NZ that threw up allergies to nuts, wheat, dust mites, cats and dogs plus birch tree associated fruits (there are many). I have avoided wheat as much as possible but this has not helped.

    I have researched the condition (as we all do) and asked my GP for trials of Minocyclin and Hydroxychloroquine. The former gave me terrible somach pains even with the use of antacids so I stopped it after a month and it made no difference to my skin. I took the Hydroxychloroquine for about 4 months after seeing a dermatologist here, and had partial improvement only so stopped it about 18 months ago. 

    In the past 6 months the disease has progressed rapidly and I have now developed generalised aches and pains and continuation of hair thinning. The rash completely covers the front of my trunk, inners arms to my elbows and backs of legs. It is raised, reddened and itchy at times. I know that it is autoimmune but it is a very lonely experience especially in a country with a small population and few cases of this form (it seems that way). Is there anyone else from NZ or Australia with this condition please?

    I have tried vitamin and herbal supplements, chinese medicine (tablet form) all to no avail. I haven't found any health professional here that is really vaguely interested in the disease.

    Great to have a forum to connect with others who can understand how this makes me feel...thank you smile

  • Maryliz
    Maryliz Embalmiwill

    Posted

    Hi to you all

    My GA has subsided in the last 3 weeks and I do not know the reason why.  I had a thought it might be the cold weather as heat can irritate the skin anyway.  

    Also  - in case this helps any of you.   I have started putting sea salt, almond oil and tea tree  oil into my luke warm bath water and having a 10 minute soak.  If it does not help GA it certainly will be good for your skin and the tea tree oil aroma is good for mental health and sinuses too,       Positive health.  

  • Embalmiwill
    Embalmiwill

    Posted

    Hi there again.  It has been almost a year since I last posted.  This has been a rough year.  However, there is some postitive things going on regarding the GA.   I saw a new dermatologist and he started me on 3 medications that I take one time a month.  I have taken these now for 5 months (5 times) with fantastic results!!  I will attempt to post a picture of the before and after of my left elbow. I am having fantasitc results all over my body.  I am sooo excited.

    The medications are:

    #1 -  Levofloxacin 750mg - 1 tablet monthly

    #2 - Minocycline 100mg - 1 capsule monthly

    #3 - Rifampin 300mg - 2 capsules monthly

    I take all 4 of these pills at the same time (with food or it will make you sick) (also, if you are female and get yeast infections, make sure you ask your doc for Diflucan to take before these, trust me rolleyes   )

    This is the first time in the 34 yrs that I have had any type of positive reaction

    • lisadder
      lisadder Embalmiwill

      Posted

      I'm so happy to hear that you're seeing some actual positive results!

      I can't see the pics, too small, but look forward to hearing in another few months, if you're still seeing these clear up.  

       

  • sharon50105
    sharon50105 Embalmiwill

    Posted

    Hi

    My dad has had GA for over 40 years too and tried every treatment there was. For him he worked out if he ate an apple a day it cleared up. If you have it really bad you may want to try 2 apples a day for a little while.

    He said it takes a few weeks to get redness out and a few weeks more it is totally gone.

    If you try it let me know how you go.

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