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Treatment strategies...more ideas!

Posted , 77 users are following.

Lisa3vermont
Lisa3vermont

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!   

7 likes, 262 replies

262 Replies

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  • Leezydeez
    Leezydeez Lisa3vermont

    Posted

    Hi All GA Sufferers,

     A brief intro to my story

    First got localised GA on back of my hands (Biopsied) in 2005. At the time I put it down to new (cheap) leather motorcycle gloves worn over a 4 day period. Silly I know but at the time couldn't think of any other reason for it. Had it for 10 months and then it went of its own accord. I was 51 at the time and not gone through menopause. Healthy, fit, happy.

    Two years ago out of the blue, back again on back of my hands. Tried cortisone, no result. 10 months ago bam! generalised! my arms, chest, neck, face! It makes me cry because it is so very ugly and just keeps spreading....now on my feet. Dermatologist prescribed Clobestol  with no result. Recommended the light therapy but said it may or may not work. Could have up to 300 treatments but the literature states that it could cause cancer in the long term. So chose not to go down that road. Like Carole I believe it is from the inside. It gives me the ***ts that no drug company or medical entrepeneur has bothered to research this. It obviously affects a lot of people worldwide and there is a market there!

     I live in Australia. I am now 60, take blood pressure medication, cholesterol medication, multi vitamin, glucosamine, excercise daily, practice yoga, eat healthily but do suffer from anxiety so take Zoloft.  I was happy until this started spreading. Is it a cocktail of medications that cause it? Hormones?Food intolerance (tried elimination diet but it made no difference). Stress? Build up of toxins? Who knows but we all want an answer!!!!

    Much love to all fellow GA Sufferers.

    Lee xx

    PS Are there any men with GA?

    • FrenglishCarole
      FrenglishCarole Leezydeez

      Posted

      Hello Lee,

      Keep the positive thinking going, together we will find what causes this - I believe it is hormonal since it showed at or around menopause. It might have been lurking for many years and blossom at that time.

       have a question for you: do you have amalgam teeth fillings? I am asking because when I did my hair analysis the results showed a very high level of mercury which was attributed to my teeth fillings - My whole mouth was full of them. I don't know if it is related but this mercury created havoc in my body, attaching itself to nerves, creating cramps which I have to this day. Like you, I am physically active and eat healthy. This disease makes me very angry especially because of the lack of assistance.

      I believe that together we will find a cure, Women Power - it's a strong power - let's keep this communicating and exchanging of treatments and ideas - we will be successful.

      Take care,

      Carole

    • patty98033
      patty98033 FrenglishCarole

      Posted

      Hi Carole,

      Just want to add to the data collection here. In my case GA was not related to menopause since the GA did not occur for about twenty five years. I do have a number of amalgam fillings and have wondered if they could be causing problems.

      Patty

    • FrenglishCarole
      FrenglishCarole patty98033

      Posted

      Hello Patty,

      This is interesting - thanks for sharing - maybe the amalgam fillings are the cause of all this. The plot is thickening lol

      Together we will find a solution,

      Take care,

      Carole

    • Lisa3vermont
      Lisa3vermont Leezydeez

      Posted

      Hi Lee, same as Carole said...keep the positive thinking going and Woman Power...we have created some good momentum here!!

      Hope you have read Patty's posting (above) about DNA hair testing and selected removal of food allergens- something is working for her!

      Also, now that Carole has mentioned it again, I'm putting amalgram fillings (teeth) on my list of 'things to investigate.' 

      Lisa

      PS Thanks for adding the info about light therapy, which seems not to hold much promise.

       

    • patty98033
      patty98033 j0603

      Posted

      Thanks for the link and the reminder about this.  I did some more searching and found a number of studies besides this one that followed a lot more people so gives even more credence to this on.  Please keep us posted on your results. 

      Also keep in mind that it might take quite a while to see the results.  If I had not read posts from a few that discovered food allergies but did not notice a change in their GA for months, I probably would have thought that the results of my intolerance testing was not accurate.  As it is, I don't know which of the items is the culprit or culprits or maybe it's all but I'm still really improving so am not willing to challenge the foods yet to see if I can get away with eating any of them. 

      Patty

       

    • FrenglishCarole
      FrenglishCarole patty98033

      Posted

      Hello Patty and Lisa,

      I agree, it has to be related to our digestive system - whether we are experiencing food intolerances, allergies or simply because our body can't ingest the nutrients, it is related.

      One thing to add to our search - since I started taking Vitamins B5, C and D as well as potassium supplements (last week) - I noticed my spots are lighter, even a couple disappeared completely - I don't want to get excited yet but will keep you posted.

      Enjoy your weekend,

      Carole

    • Lisa3vermont
      Lisa3vermont FrenglishCarole

      Posted

      Hi Carole, wow, spots are lighter...that's a big deal! I'm already on long-term Vitamin regime, but what's the info/ reasoning w/ potassium?

      PS I take a B complex, but I just saw that it does not have B5 (only B6/ B12). What's up w/ B5?

      Thanks1! 

    • FrenglishCarole
      FrenglishCarole Lisa3vermont

      Posted

      Hi Lisa,

      The B5 came from suggestions from my hair analysis, as well as the potassium and Vitamin C. I have tried so many things in 8 years, got my hopes up many times to have the spots come back purplish with a vengeance. This is the first time I see a real difference in my spots, even a couple of them fading completely. I don't want to get too happy yet as it can change very quickly.

      It's funny but it looks like the common factor for all of us is the fact that we all eat healthy, are physically active and overall take care of our health - not sure what it means. 

      Anyway, I will keep you posted on my new vitamins intake but if you have not done so yet, I would advise to have the hair analysis done, you get a lot of information on what is doing on inside your body. Mine came back showing a high level of mercury and sodium which is why the recommended vitamin regimen. Everyone is different though.

      Until next time,

      Take care,

      Carole

  • RoBee
    RoBee Lisa3vermont

    Posted

    Feels like I have had this forever, at least 10-12 years. I have tried all kinds ot topicals and injection. Although, some things have helped a little but it just changes, moves or comes back in the same locaton. Doctor have been no help and I've seen several.

     I am 45 and have been a vegetarian most of my life. Right now I am vegan and about to try gluten free just because of GA. I have it on my arms leg, feet, hips. The ones in my arms bother me the most. I am embarrassed to wear sleeveless and find people looking at it. It also has becomed wrinkled around the circles on my arms and makes my skin look older.

    I also believe it has to be something I ingest, candida overgrowth, gluten intolerance or something else connected to the gut and diet. I have have seen on the interenet people  say apple cider vinegar has helped them. I am trying that these days. I am ingesting it and using it topically to see if I get any change. I am also a health coach and fermented foods and drinks are beneficaial in many ways. I am so hoping I find some relief from GA. It is so stubborn. I am more and more bothered by the fact that it  is autoimmune. I hate the fact that My body is trying so hard to fight something and I can't help fight the fight.

    • Lisa3vermont
      Lisa3vermont RoBee

      Posted

      Hi RoBee. Ten years is a long time, but your story is similar to many others, which is why I am feeling kick-ass about finding solutions! (like you, I am most bothered my symptoms on my arms, clustered rash on wrists and very bad at elbow area.)

      There is a fairly current discussion topic in this forum titled "My GA is cured - it was gluten wheat allergy." Everyone should go back and read that one! 

      I have spent many hours in the past week researching GA (on internet) from many angles, and all signs seem to point to gluten. I read an article from "sciencebasedmedicine.org" that names "Non-Celiac Gluten Sensitivity" or "NCGS." I am beginning to think that GA is directly linked to that.

      SO....I have been GLUTEN FREE for exactly five days! Maybe you start this path as well, and we can compare notes. I think you have a bit of a head start already being vegan. I already have a mostly whole foods diet, so I'm just springboarding off of that and focusing on the many healthy foods I CAN eat!

      Side note - I gave up dairy within the past year due to ongoing (not acute) gastric distress. I have read that gluten is thought to be linked to "inflammation and digestion," so there's a common thread there.

      I disagree w/ your last line...I think you can help the fight! No doubt there is an abundance of discussion groups just about gluten, but I'm goinging to reign things in and stay w/ this forum. If you start Gluten-Free now, keep us updated! Stay tuned/ stay hopeful xo Lisa

      PS. I already eat femented foods daily and now take 'fire cider' daily as a general digestive/ immune system booster.    

       

    • Lisa3vermont
      Lisa3vermont

      Posted

      An IMPORTANT added note, taken from broader discussion in this group...gluten-free cannot be assumed to be the exact/ complete answer for everyone. As per many entries here (for example, Carole and Patty), it appears that GA solutions are being found in the broader context of food intolerances that call for custom- designed elimination diets. Gluten-free appears to be one common positive approach, but I plan on also getting the DNA/ hair analysis done to identify other potential food allergies.

       

    • patty98033
      patty98033 Lisa3vermont

      Posted

      Hi Lisa,

      Excellent point on "gluten-free" but definitely one of the first things to try if searching for a food that might be causing the problem.  I have read that approximately 70% of people are either intolerant of gluten or other parts of wheat. Also a negative test for gluten allergy does not mean that wheat is not the problem.  Dairy is the 2nd most common allergy or intolerance and then I think soy was third. 

      Patty

       

    • Lisa3vermont
      Lisa3vermont patty98033

      Posted

      Patty, thanks, I think that I have been in denial about soy,lol! So, I am dairy-free and just started gluten-free, but still reach for tofu and miso all the time! Hard to imagine cooking w/out them, in fact I like to eat plain tofu when I need protein. I look forward to getting some specific answers w/ DNA test, but in the meantime, I am mentally torn about soy! (Ok, I just reminded myself to chill out.....)
    • patty98033
      patty98033 Lisa3vermont

      Posted

      Hi Lisa, You are welcome!  I do think if you did a search on the side effects of eating soy or something similar, you would come up with a huge list of articles detailing a lot of things you didn't know when you thought it was a good way to get protein.
    • cynthia44652
      cynthia44652 RoBee

      Posted

      There is a company called Limu that has good fermented juice that has numerous benefits, they also have a great gluten free organic powder to make a protein shake with, I love it, it's not cheap though. I have only tried the juice once but I am going to revisit it now that I am hearing so many good things about fermented foods. You can only get this stuff online but the products are clean and healthy. 
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