Treatment strategies...more ideas!

Skin, nail and hair health
1

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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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

3

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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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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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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Interesting Chris - I will give the accupuncture a try - do you know what kind of Chinese medicine you used?

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Thanks Chris! Acupunture might be worth a try, except that in my case, the GA is in so many locations on my body!  How long were u off gluten?? 

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Hi Lisa, I am Cheryl from Virginia.  Have had GA for 14-15 years.  Some similarities that I have seen mentioned is having Pitoriosis Rosea when I was preteen (a skin disorder which I had treated with ultra violet).  I also in my early 20's had a skin disorder under my arms which was truly painful and I attributed it to being alergic to my deoterant.  This was a stressful time in my life also.  In my thirties had an alergic reaction to elastic in underwear and bathingsuits also during an extremely stressful time in my life.  So needless to say I have skin problems but they really occur when I am under stress.  I am now 68 years old and have had GA (diagnosed biopsy) since I was in my 50's and I agree Doctors are not too interested in something that doesn't kill you.  I am treating my GA with a cocktail of antibiotics.  My Dermatologist had several courses of action but none had a great success rate. I did have success with (Minocycline, Rafampin, and Ofloxacin).  I took them for a year once a month and the rash dissappeared.  I thought I had cured the disorder and in 6 months it came back.  So this is my second round of antibiotics but doctor started with a month of Prednisone to sock it hard then the antibiotics for 3 months.  What we are trying to do is develop a maintenance dose.  My doctor and others think that the make up of the papules that make the rings in GA is similar to...believe it or not...Leprosy and they treat Leprosy with the 3 antibiotics I am taking. 

I mentioned my history to possibly trigger some coincedences in peoples lives.  But until we get this figured out it helps to try to remove the ugly circles that are visable to others.  And others think it is ring worm or something catching.  People always ask me "how did you burn your hand".  It really looks like burns

Hope this info was of some help and keep posting.  I am sure we who have GA are more interested in solving our dilema that the medical world.

Cheryl

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Hi Lisa,so sorry to hear you are now a member!  Here is what I have learned in my almost 2 years since my diagnosis.  The reason your doctor is passive as is mine is because this disease won't kill you.  It doesn't itch or burn either.  What they don't understand is that it can spread over your entire body.  It doesn't go away (unless you have the localized version) but that one is mostly in children.  Oh, and it leaves scars!  So, I guess if we don't commit suicide because we become reclusive shut ins it won't kill us. Gluten free diets will only work to cure you if you have a gluten sensitivity which is a simple blood test.  I have had the test and it was negative I have also tried UV (sun makes my rash worse).  

I have tried everything under the sun and moon on this. I too want to find out what is causing my GA it must be done through process of elimination.  My doctor says it can just be a skin disease period with no cause.

I am sorry to be so doom and gloom but here is a cure if you want it...we'll not a CURE but this will make your rash go away plaquinil and 5 mg prednisone per day.  My rash went away after 3 days.  Problem is my doctor won't give me the prednisone so when I run out I will need to consult another doctor.  I have enough scars from this rash don't want more.

Good luck!

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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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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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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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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!

14

Be careful with the Prednisone though, side effects of long term use are signifiicant. This blows... I just don't know what else to say, I honestly think if you got it you got it and there's just not much that can be done. I am going to explore the herbal meds. 

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Hi Lisa,

Nice to see you here.  I am 72 and in about year 4 of GA - also diagnosed by biopsy. In 2014 after trying all of the standard GA recommendations without results & reading everything I could find on GA, found that the most helpful posts were from folks posting here who had had some (or a lot of) success with theirs.  The ones I found most helpful were those who mentioned that finding out about food allergies (as you mentioned with gluten) and eliminating that food (or foods) brought positive results but that it took several months to have significant results.

I tried the Whole 30 diet which eliminates several foods for 30 days and is a good place to start since you can find out about it online for free.  I didn't have success with this so later tried JJVirgin's elimination diet with the same success - none.  Because it didn't work for me doesn't mean that it won't work for someone else so also worth trying.

Not giving up, I decided that I needed help.  After a significant amount of searching for a testing service that was reasonable since neither my dermatologist nor endocrinologist were supportive of my proposal that this might be caused by a food allergy, I found a group in England who uses a hair sample and for a little over $100 US does a DNA test on a hair sample that you mail to them.  I got my results on May 1 and that day eliminated all of the foods mentioned - all of which I ate regularly and considered them to be healthful foods.  Within a few weeks I noticed that I was no longer getting new outbreaks and that the existing granulomas seemed to be fading some or at least not continuing to grow.

It is now 8 months later and my hands & arms are cleared with only some residual faint color left in the skin.  My feet & legs are taking longer but are definitely improved and several of the larger ones now have flesh colored interiors (instead of red/purple) and the ridges around the edges are diminishing.  

It probably won't help you because each of us is different, but some of the things that were on my list were tomatoes, coriander (cilantro), bromelin (an enzyme in pineapple), cauliflower, peas, grapefruit & egg whites.  None of these caused me any noticeable reaction when I ate them but as I continue to avoid them, I am definitely continuing to notice an improvement in the GA.

So that's my advice.  Continue to try to track down food intolerances or allergies and eliminate the items from your diet for long enough for the absence of them in your diet to allow you to heal yourself.

Good luck with your quest.

Patty

 

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Well I have now been to my 3rd dermatologist.  His treatment plan is high dose of prednisone for a few days tapering down till day 8.  This will get my rash in check and then a low dose for maintenance.  I honestly think this will be fine short term as I continue to seek out what is causing my GA.  I won't rest till I figure this out!  In the meantime at least I will be rash free.  I am hoping to take less than 5 mg per day along with the Plaquenil which also will control my autoimmune response.  I think I mentioned the 3 antibiotic combination therapy.  If you do an internet search it should pop up.  This was a case study done in India wherein a 52 year old woman was treated with with 3 antibiotics given together once per month for 5 months and was cured this indicates GA is caused by bacteria.  The study is very interesting, I hope you will check it out.

Please continue to share, that UK DNA

test sounds interesting!

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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?

18

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

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Yes Carole

a mouthful of amalgam fillings.....it was the era after all!

Lee

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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