Posted , 9 users are following.
I have had disseminated GA over 80% of my body for 3 years now. I have been on probably all medicines and I have had extensive allergy testing. Only thing that works is Prednisone. I have tried all the diets and I have no food allergies. Any one else have a cure?
0 likes, 23 replies
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nora94022 lucy00519
Posted
I can't believe that Clobetasol did not work. it is very strong stuff, but you have to keep using it very consistently and not give up too soon. With me, I use it twice a day for 14 days and really rub it in. And then I stop for 14 days. Then It requires a second round of another 14 days. it's only then after the second round that I start to see results. And the results keep coming even after I stop it. It takes a while to work.
Guest lucy00519
Edited
Hi Lucy, I have been completely clear for about 10 months now. What worked for me is Zyrtec and Zantac - antihistamines (any brand is fine I'm sure), and Elidel cream (prescription) daily even though I have been clear. My Derm would like me to wean off of it, but my GA was so extreme I don't want to risk it. I also wear Jobst knee high stockings around the hosue. I have been off the antihistamines for about 2 months now - still clear. I did start Estroven to help with hot flashes around the same time as the Zyrtec and Zantac - could all be related. Hot flashes do cause an increase in histamines. I attached my original post below - it was under "what do we all have in common", but that thread just stopped. I do check back on this site every once in a while to see what the latest treatmenst are.
Honestly, I would research these meds on your own to see how the antihistamine and Elidel (pimecrolimus) mechanisms can can stop the GA - rash, swelling, redness, itchiness, etc. Be sure to read your pathology report - that really helped me understand what was going on physiologically with my skin - think about what causes WBC's to form under the skin and cause a rash, etc.
Hope this helps.
Renee
Original Post Below:
https://patient.info/forums/discuss/what-s-do-we-all-have-informed-common-619051?page=0#2919703
emma31356 Guest
Posted
Hi Renee, Its interesting you bring up the flushes.... My GA started when I was receiving IVF treatment. For some reason the overload of hormone coupled with the gradual decline of my natural immune system (allergies had been getting worse by the year for a ten year span) the GA found a perfect place to live on my body. I agree with you 100% when you say "be sure to read your pathology report" It was live bloods that set me on the wright track. My GA is so fain I can only just see it now, It has taken 7 months of restraining from gluten and processed sugars.... but I'm now allergy free! (could even peel a carrot with out getting welts).
emma31356 lucy00519
Posted
Lucy,
Firstly I really feel for for you. I just replied further down on a thread but I am going to share my experience with you here in case you don't see the other one. The biggest thing you need to do is find the cause not the cure. In my opinion its slightly different for every one. I had 'live bloods' done by my naturopath. This is different from visiting pathology, as the bloods are examined the second they are extracted. For my case she was able to ascertain that my immune system was under attack and my red cells were dying too fast. It seems to be a common factor for a lot of GA sufferers that immune and hormones play some sort of role.....
Anyway, the longer you have had it (in my opinion) the longer it will take to heal. So I have been on a plant based (still some meat), iron rich diet for seven months. I have cut gluten, sugar and processed foods out of my normal eating regime. It was tough at first but seeing my blood cells on a large screen really hit home for me so I felt I had to act.
I had GA over a large portion of my tummy, large patches under both breasts and many smaller patches on my legs and feet. It has been seven months (and the diet is soooo easy now, also 17 kilos down), and my GA is still there but hardly noticeable, I have to really look to see it.... so I am hoping that by 12 months it just may be gone....
I hope this helps.
Emma.
lucy00519 emma31356
Posted
Thanks, I went to a functional Dr that did extensive testing. She said she couldn't help me since I had no allergies and I should see an immunologist because my IgG was low. I spoke to my dermatologist that said that had nothing to do with GA. I tried to find an immunologist but the only one at FAU said I would have to wait until November. I tried the gluten free , sugar free, carb free diets and they didn't make a difference.
Please explain what "Live Bloods" consists of?
nora94022 lucy00519
Posted