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Treatment strategies...more ideas!

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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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  • cheryl09489
    cheryl09489 Lisa3vermont

    Posted

    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

    • Lisa3vermont
      Lisa3vermont cheryl09489

      Posted

      Hi Cheryl, that was really informative. Although I really prefer not to take a lot of meds, I am trying to keep an open mind and consider all potential courses of treatment. So, it sounds like the antibiotic cocktail worked on the surface level, but that the underlying/ root cause persists because the rash came back in 6 mos. 

      I think I found another "common thread" in your story...stress/ anxiety, allergies, general sensitivities seem to be shared in many GA people. I'm actually keeping a notebook at this point, trying to use all of these info points (from this forum) to create a larger picture that might give us some real clues. Thanks again for sharing. L.  

    • cheryl09489
      cheryl09489 Lisa3vermont

      Posted

      I totally agree about taking meds.  I don't know what else to do.  I think it is something with diet or allergy related.  I have had extreme allergy reactions since very young.  I had an allergic reaction to ivy, oak, and sumack poison from 3 years old to 21.  I would swell up and it came out all over.  My face was non-descript.  Eyes closed and blown out to meet the end of my nose.  In these days you would be put in the hospital and pumped full of antihistamine and it would be over in a day.  But the point is I always had skin disorders of all kinds throughout my life.  It just burns me up to get to be 68 and still deal with it along with the usual aging difficulties.  Thank you for responding and I will keep posting and you keep collecting info.  This is what Doctors should be doing but we have the advantage by this forum.\Cheryl
    • emie_4281
      emie_4281 cheryl09489

      Posted

      Hi Cheryl!

      Searching for a doctor in NY area to administer the ROM treatment for my husband.

      Would your doctor in VA recommend a doctor who would be willing to hell my husband?

      He's been suffering for over 20 years and we have finally found out that it's GGA but no doctor will treat it!

      Please...any help is much appreciated!

      Many, MANY thanks!

      Em

    • cheryl09489
      cheryl09489 emie_4281

      Posted

      I have not posted in a long while.  I am going to discontinue the antibiotics as someone stated they are a hit or miss remedy.  It did work once then not the second occurrence.  I now have the breakouts all over.  I feel as though it has gone systemic.  Do you all feel as though itching them activates and spreads the outbreaks?  I am more concerned now as it has never been itchy before and never as extensive as it is right now.  I am going to be 71 years old this year and young looking for my age with attributes that I am lucky to have but this has really changed how I feel about how I look.  I am reading as much as I can online and trying to figure this out.  It is not new to me as I have had it almost 20 years but not like this.  It reminds me of when I was young and got ivy poison and I itched all over and it came out all over.  I was told it was in my bloodstream.  Feel like I can't catch a break here..age is one thing but to have this rash eating up all the collegen left  in my skin with this unsightly rash baffles me.  This is autoimmune related and those defenses are compromised as you age so there we go.

      i see my dermatologist this week and it may be the last time.  When I started with her 5 or 6 years ago she had a list of ways to treat this.  I will address it with her and report what we agree upon.

      i do not know of a dr to suggest.  Mine is really good one but this skin disease is not one they are interested in researching mainly because it doesn't kill you.

      i am sorry I have little to boost your spirits as mine right now are depleted.  I am a very high energy happy life loving person who expresses my energies in art so this has me upside down right now.  

    • barb77337733
      barb77337733 rebecca47886

      Posted

      Have you tried probiotics?  It worked for me, but I also take magnesium, 500 mg daily.  The probiotic I take is from GNC, 10 billion active cultures.  My GA has been gone for a couple of years.
    • LaurenSimone
      LaurenSimone barb77337733

      Posted

      Hi Barb, 

      How long did it take to work? how many castles do you take per day is your magnesium also GNC?

      How bad was your GA? sorry for all the questions but I think I'm really wanting to try exactly what your taking smile

    • barb77337733
      barb77337733 LaurenSimone

      Posted

      The magnesium I take is called Nature Made 250 mg.  I take two tablets each night for a total of 500 mg daily.  My GA was not widespread, but I had a couple of rather large round spots and a few smaller ones that were just a couple of pustules.  I had one large spot that eventually subsided, only to have another appear in another spot.  The dermatologist gave me no options for a cure.  I went to a doctor for a different problem (digestive) and was prescribed the probiotic and magnesium and after a few weeks the GA miraculously disappeared and has never returned.  I continue to take both the probiotic and magnesium every day.  It's been a couple of years since the GA disappeared.

    • LaurenSimone
      LaurenSimone barb77337733

      Posted

      Yeah mine is just on my feet but doesn’t seem to come and go like yours and from alllllll the readings I’ve read I think it seems to be the longer you have stubborn spots the harder they are to get rid of. But hey magnesium and a probiotic can’t hurt or make it worse!!! 
    • barb77337733
      barb77337733 LaurenSimone

      Posted

      I'm not sure if it was the probiotic or the magnesium or the combination of both that helped.  You may want to start with a probiotic and then add the magnesium if you don't see an improvement.  Or vice versa.

    • lynn73162
      lynn73162 barb77337733

      Posted

      I have it about the same as you did. The ones on my hands are fairly large but the spots on my arms are small. It just makes me look like I have a disease or aomething and with summer coming I feel embarrassed to wear a tank top and thats all I wear. Is the probiotic nature made also?
    • barb77337733
      barb77337733 lynn73162

      Posted

      No the probiotic is GNC's probiotic complex with 10 billion active cultures which is a bit expensive but worth it if it works.

      My GA was embarrassing when swimming at the gym.  So glad it's gone.  

    • lynn73162
      lynn73162 barb77337733

      Posted

      Thank you so much for your input I will definatly try it! I will keep you updated
  • j0603
    j0603 Lisa3vermont

    Posted

    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!

    • cynthia44652
      cynthia44652 j0603

      Posted

      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. 
    • j0603
      j0603 cynthia44652

      Posted

      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!

    • Lisa3vermont
      Lisa3vermont j0603

      Posted

      Hi J, My doctor (whom I have always liked) also told me it is what it is. When I wanted to explore further, she said "you already have a diagnosis." This really slays me, so I'm glad  that I found this group!

      Clearly, we have to be strong self-advocates and/or switch doctors. As I said in my reply to Cynthia (above), I plan to pursue Chinese medicine and will report back.

      Thanks for reminding me that I can get a blood test for gluten sensitivity. 

      Keep the faith! L.

    • j0603
      j0603 Lisa3vermont

      Posted

      Hi Lisa, i think I mentioned that I am on my 3rd dermatologist now. I went out of pocket to see this one. He prednisone high dose prednisone tapering down. I also take plaquenil (this also helps with the immune response) he will taper down the Prednisone and then have me take a low dose until I find my cure. I would like to report day 3 my rash is almost gone. I am going to start applying fade cream to my scars. Happy! Happy!
    • cynthia44652
      cynthia44652 j0603

      Posted

      Many people have tried the antibiotics with monthly dosing, I have not seen much success with it from what I have read. It seems as though it is hit or miss who resonds well to that treatment. I just don't want to take a lot of medicine, that concerns me as well. I have been on Prednisone for other issues recently for inflammation in my shoulder. I did not see a difference in my rash. I hope you get good results, I wouldn't wish this on my worst enemy. 
    • Leezydeez
      Leezydeez cynthia44652

      Posted

      I'm with you there Cynthia.......I don't want to take a lot of medicine either. Tried Clobestal and Tacrolimus ointment for a while. Spots sort of faded but still here and when I stopped ointment they came back with a vengeance.I want to avoid cortisone.....it causes so many other problems.
    • cynthia44652
      cynthia44652 Leezydeez

      Posted

      I am going to try the vine (?) herb I seen on an earlier post, if I am going to take pills I would rather do herbal then steriods. I have to scroll through the posts for the complete name but it is vine something that a few have had success with. 
    • Leezydeez
      Leezydeez cynthia44652

      Posted

      Cynthia

      It is Vine essence. I googled it. Though they did say there was a problem with it having unacceptable levels of lead.  and it has been banned in Canada. Lee

    • ann47246
      ann47246 j0603

      Posted

      Hello, I just read your post and wanted to clarify something for you. There is no blood test for gluten sensitivity......you can have a blood test as a first step in celiac disease but not for sensivities. It is possible to be sensitive to gluten and other foods or combinations for example: gluten and eggs or gluten, eggs and dairy or gluten an soy. My GA went away when I went on the Virgin diet but came back over time after I added eggs and dairy back. It might be worth a try to give the Virgin diet a whirl for 3 weeks?
    • cheryl09489
      cheryl09489 j0603

      Posted

      Lisa, what do you mean scars!?  Are they where you itched them or what.  I am just at a point where my GA itches which it has never done.

       

    • cob
      cob cheryl09489

      Posted

      Cheryl, Mine itches occassionally and I take a Xyzal, Allegra, Zyrtec etc. it helps lots!

       

    • kate43351
      kate43351 cynthia44652

      Posted

      Hi Cynthia.  did you find any herbal meds that helped?  I have the perforating variety and it blisters and hurts and is red and spreading rapidly.  It will soon go from toe to knee.  It's making me pretty miserable.  I'm rather hoping that you have a good news story for me!  Yours hopefully, Kate 

    • Sandy007
      Sandy007 ann47246

      Posted

      I realize this post was 3 years ago but Cyrex Labs have a blood test for gluten reactivity and autoimmunity. They also have a test for cross reaction sensitivities. Just thought I'd add this in case others are looking for a test.

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