Treatment strategies...more ideas!

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Hello, I'm Lisa, a happy, healthy woman in my 50's - Random purple/red rash  (ankles/ legs/ wrists/elbows) appeared within past year... GA diagnosed by biopsy. Tried strong steroid topical cream w/ minimal results.

I am amazed how passive my dermatologist and physician have been! Bascially "don't know where it comes from, you have a diagnosis, nothing to be done." 

Glad to have found this forum, although I am surprised that there are so few members. Still, let's get some POSITIVE energy going around this!

Disclaimer: I want to freely offer my thoughts, but if they differ from someone else's course of action, no judgement is implied at all!

I do not want to take medication, but rather, gently explore the root of the GA. It's an auto-immune response, so our bodies our telling us to change something!!

In my very limited research so far, GLUTEN has been mentioned as a potential cause....has anyone else heard that? Because I have already gathered lots of compelling info on the merits of a gluten-free diet, I am starting that approach - not an easy path, but I'm willing to try it and will keep you all posted (fyi, altho not vegetarian, I do follow a pretty healthy diet - mostly whole/ fresh/ organic foods).

In terms of treating the exisiting rash, I have just read something about ULTRAVIOLET LIGHT THERAPY- anyone else heard about this for GA? I am going to investigate that asap, and will keep this group posted.

Thanks so much for this opportunity to connect and brainstorm!   

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  • Posted

    Hello Lisa - I am on the same page - this is something coming from the inside we need to fix - I have this disease for 8 years and realized that doctors don't care since it is not life threatening - it is chronic and they have no idea what it is caused from.

    I found out that once you reach menopause, your body releases all toxins accummulated since year 1 - it is stuck in your bone marrow and gets released slowly into your system creating all kinds of issues including this one. 

    I won't tell you all the stuff I have done so far in the last 8 years but like you, I eat a healthy diet, try to avoid GLUTEN as much as possible as well as processed food - I exercise 5 X/week and am otherwise pretty healthy.

    I did a hair analysis which determined I had high level of mercury in my system - mainly from my old teeth fillings - I had them all removed and changed to porcelain fillings. This mercury screwed up my system from candida to nerve damage, digestion problems and I believe GA. 

    When you do a Hair Analysis, they explained all and give you solutions to fix what needs to be fixed - the mercury has also made my sodium level off the chart and to compensate I am taking potassium, vitamin C and vitamin B5 supplements which I have just started this week. I will keep you posted on how that goes. 

    Throughout the years, some of my spots have gone away, while other have started - not sure why. Perhaps since it took 50 years to get there, it is unlikely going to disappear in 1 year - I have to be patient but believe I am on the right track. 

    Bottom line, it is my opinion that anything to be applied or any treatment coming from the outside of your body i.e. ultraviolet light therapy is a waste of money. 

    Let's keep in touch and continue our fight in getting rid of this awful auto-immune skin disease.

    Cheers,

    Carole

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    • Posted

      Carole, so nice to hear your thoughts. Good point about the many years of varied built-up toxins, which means no quick fix. 

      I also take vitamin supplements, which should have been included as part of my story. In the past 3 years I had 2 foot surgeries and my bone just was not healing...I add this point as a possible "puzzle piece" to GA....may or may not be related. Anyway, to address "bone growth" I started a daily regime of  3-4K Vitamin D, 1200mg Calcium, and a B complex. Bone is healed (yay), and I'm staying on those vitamins. I understand that most pp could benefit from Vit. D supplement, which is dificult to get in your diet. 

      Hair analysis is an interesting idea - sounds like it gave you a lot of info.

      So we are in synch about (first and foremost) investigating and methodically addressing the root cause of GA, but I am just vain enough that I will also look into the ultraviolet light therapy as a potential way of subduing the spots/ splotches. For me, they are slowly, steadily appearing in new places. As someone in this forum mentioned, I will also treat my skin kindly with medicinal essential oils, not as a cure, but as a bid to soothe/ minimize the outward manifestation. 

      L.

      PS.One more thing - I'm wondering if anyone knows if sun exposure makes GA better or worse??  

       

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    • Posted

      Please do keep me posted on the Ultraviolet treatment - I am open to trying it if you see improvement. As far as sun exposure, I have read that in some cases it makes it worst but not for me - I love the sun and it doesn't make my GA worst or better.
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    • Posted

      Hey there! I have had this on and off for years, I can tell you that sun made no difference either way with mine. I can also tell you that I am gluten 90% free because of severe IBS and it hasn't made a difference, I am still hopeful though. Mine really flared up when my IBS was out of control a few months ago, I know that for sure. I have used the creams, in fact I  still am but it is not helping. I am 46 very healthy other than belly issues and have delt with this since early 30's. The light therapy from what numerous people on these discussions does not work. Many people have had success with Chinease medicine which I am going to explore as soon as I can. Good luck!
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    • Posted

      Hi Cynthia, I've previously mentioned "puzzle pieces," which includes finding common threads between all of us. In that vein, while I don't have IBS, I do tend to have ongoing digestive problems (sometimes w/ IBS-like symptoms) that I manage pretty well through dietary choices and natural digestive aids, e.g., ginger or "real" fermented foods. Interesting that you see a correlation between IBS and GA flare-ups, maybe indicating that things are generally/ holistically out of balance for you at that point in time.

      I like your idea of exploring Chinese medicine....I'm thinking about that as well.

      Also, thanks for your feedback that light therapy has not worked for others.

      (For other readers who may not know, IBS = irritable bowel syndrome) 

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    • Posted

      Hi Carole,  I am a retired MD who specialized in nutrition and alternative medicine, and I have never heard that "once you reach menopause, your body releases all toxins accummulated since year 1... creating all kinds of issues... "  It is an interesting idea.  Do you have any references on this?   I also had a hair analysis which showed a high level of mercury , and had my amalgams removed and replaced with porcelain. As I have mentioned before, I had GA breakouts in 1997 and 2006, following dental work, and I also believe that mercury is one of the causes of this problem.  I have been totally gluten free for 2 years, which has relieved my optical migraines but not affected the GA.
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    • Posted

      Hi Carole, Thanks for the tip.  I read the article: Menopausal Discomfort? No Sweat! A New Theory on the Cause and Prevention of Hot Flashes  by Sydney Ross Singer  October 24, 2007.  It makes a lot of sense.  After menopause a woman’s body is no longer able to get rid of toxins through the monthly period.  Sweating can remove toxins, but many women don’t like to sweat and use antiperspirants to prevent even the armpits from sweating.  The body, in its wisdom, heats up to induce sweating, often at inconvenient times, to get rid of toxins. They tested this theory by having women with severe hot flashes use a sauna or steamroom for 20 minutes a day. Those who stuck with it found that their hot flashes and sweats stopped after 2 weeks.  Those who dropped out continued to have hot flashes and spontaneous sweats.
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    • Posted

      Hey patty,

      Hoping to hear back from you! I just joined and think I read you had a test performed in the UK? and it helped you find some respite from this awful disease?

      I'm 31 with it on my feet mostly but have just noticed it spreading. I too believe it was food related as the last year I have consumed heaps of sugar gluten and soy! In 5 years I'm never spread so that's the only thing that changed for me. I'm currently doing the AIP diet but would love some tests to give me a little hope that I'm on the right path!!

      Thankyou,

      Lauren 

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  • Posted

    Hi lusa...i to am in my 50's and got GA  2 years ago on my elbows and forearms. As you found Dr's dont guve mych help. I did research and went (for the first time ever) to an accupuncturist. We did treatments for about 2 months the she used a thing called a 7 star pun. Basically 7 pins in like a small little hammer. Basically hammerd (for a non technical word im sure) the GA for a few sesions and it started going away. At the same time i did go Gluten free. Chinese medicine believes to treat the symptoms from within( rather then a topical cream) this the needle mive the blood that is stuck in your red patches. Now soon after i went back to eating Gluten and it didnt seem to bring the GA back. So, after all this, im not sure if the accupuncture was the fix ior if it was just the time that the GA goes awY by itself.
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    • Posted

      I went off gluten for 4 month during the time of accupuncture treatments. The GA is gone right now( minus some scaring) but when i went back on Gluten the GA hasn't returned which has now been about 3 months.
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    • Posted

      She had me drink some herbal teas at first but dont think that did anything...pretty nadty tasting too. Not to keen on accupuncture as far as what kind,, i know its Chinese...but the 7 pin thing she used made it worse for a few days then started going away. Like i said, not sure of the accupuncture was the positive or if it was just time for it to fade away. I still go to her for the scaring so will keep you all informed how that goes. BTW, my insurance covers alot of visits so check into it. 
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    • Posted

      Oh...tje insurance wouldnt cover the accupuncture for the GA but would for a sore lower back....so just a thought when you submit but your accupuncturist will treat your GA ;-)
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    • Posted

      Hi Lisa,

      I tried acupuncture and a Chinese herb called margarita. It seemed to not provide much improvement for my GA or Ulcerative colitis. I heard about the photo therapy but they require 3x per week and from what I've heard is not helping many people. I started using a product that I sell for rosacea/psoriasis and it seems to be helping reduce the redness and minimize the bumps. I've only been using for 2 weeks and already feel confident wearing short sleeved shirts- thankfully because it's summer!

      I'm in my early 40's, have had GA for almost 20 years. Have tried everything from dermatologist and haven't gotten anywhere until now ( cream, injections, liquid nitrogen). I am Gluten and dairy free for about 3 years now. I'm not sure if this is my cure, but it's given me hope which I haven't had in a long time. I hope everyone finds success in their treatment.

      Kara

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