Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Yippppeeeeee. What a great praise to hear...........thanks. Keep getting better ni Alpha One Antitrypsin Deficiency with severe Panniculitis Atlanta, GA ~~~~~~~"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy." (Philippians 1:3,4) i have had EN for a long time and never found anything that reallyhelped me. the past two years i have been miserable with no relief,then a member suggested plaquenil..that day she gave me my life back.i have been on this medicine since july and have been knot free forover a month. i still dont know my trigger and i am still afraid thatit could come back at any time..but i am living for today and i am sohappy and amazed at the fact that i am living again. Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Yippppeeeeee. What a great praise to hear...........thanks. Keep getting better ni Alpha One Antitrypsin Deficiency with severe Panniculitis Atlanta, GA ~~~~~~~"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy." (Philippians 1:3,4) i have had EN for a long time and never found anything that reallyhelped me. the past two years i have been miserable with no relief,then a member suggested plaquenil..that day she gave me my life back.i have been on this medicine since july and have been knot free forover a month. i still dont know my trigger and i am still afraid thatit could come back at any time..but i am living for today and i am sohappy and amazed at the fact that i am living again. Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Hi Sandy, Yeah!!! I am so happy for you. I think I was probably the one who recommended it to you. It has given me my life back, and I felt like after my bout with pneumonia at the end of my last flare-up of EN, that I was going to die. It is truly a miracle drug. I think I have finally pinpointed my trigger-- an allergy to both common indoor and outdoor molds. I had gone to see an allergist who ran a ton of skin tests. She is familiar with EN and is a mold expert, and thought that it might be my trigger, since I live in a pretty moldy area of Northern California. She did the low level skin tests and I didn't react to anything but cats. She wasn't convinced, so she did higher doses of all the molds and pet dander in my forearms. I reacted pretty quickly to cat and a little to dog, but nothing else. However, several hours later and into the next morning, I developed an EN nodule next to one of the mold injection areas on my forearm, and all the injection spots from the molds had welted over. I also felt ill and my elbow and finger joints were really stiff. The allergist saw me right away and concluded that my EN trigger was probably mold. She gave me a steroid cream that cleared up the EN nodule pretty quick, and the Plaquenil handled the rest, so I didn't have a full on flare-up. She put me on Nasonex (a steroid nasal spray) and Patanase (an anti-histamine nasal spray) and said that it should hopefully do the trick for the mold allergy. She's not sure it was my initial trigger, but most likely the trigger that kept the EN going non-stop for nearly a year until I got onto Plaquenil. The initial immune system screw-up was probably due to developing Hashimoto's thyroiditis last year when the EN started. I'm so happy you've found relief. I've been so fortunate to be able to have Stanford-affiliated doctors that seem to know a lot about EN. I love my rheumatologist, she knew right away that I would probably get relief from the Plaquenil. I'm still on it, it has been 8 months, and I'll probably stay on it for another 4 to 6 months, until my immune system finally settles down back to normal. At least we both have something now to fall back on if we go off the Plaquenil and another bout of EN crops up. Good luck in your continued recovery! April EN 5/07 > > i have had EN for a long time and never found anything that really > helped me. the past two years i have been miserable with no relief, > then a member suggested plaquenil..that day she gave me my life back. > i have been on this medicine since july and have been knot free for > over a month. i still dont know my trigger and i am still afraid that > it could come back at any time..but i am living for today and i am so > happy and amazed at the fact that i am living again. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Hi Sandy, Yeah!!! I am so happy for you. I think I was probably the one who recommended it to you. It has given me my life back, and I felt like after my bout with pneumonia at the end of my last flare-up of EN, that I was going to die. It is truly a miracle drug. I think I have finally pinpointed my trigger-- an allergy to both common indoor and outdoor molds. I had gone to see an allergist who ran a ton of skin tests. She is familiar with EN and is a mold expert, and thought that it might be my trigger, since I live in a pretty moldy area of Northern California. She did the low level skin tests and I didn't react to anything but cats. She wasn't convinced, so she did higher doses of all the molds and pet dander in my forearms. I reacted pretty quickly to cat and a little to dog, but nothing else. However, several hours later and into the next morning, I developed an EN nodule next to one of the mold injection areas on my forearm, and all the injection spots from the molds had welted over. I also felt ill and my elbow and finger joints were really stiff. The allergist saw me right away and concluded that my EN trigger was probably mold. She gave me a steroid cream that cleared up the EN nodule pretty quick, and the Plaquenil handled the rest, so I didn't have a full on flare-up. She put me on Nasonex (a steroid nasal spray) and Patanase (an anti-histamine nasal spray) and said that it should hopefully do the trick for the mold allergy. She's not sure it was my initial trigger, but most likely the trigger that kept the EN going non-stop for nearly a year until I got onto Plaquenil. The initial immune system screw-up was probably due to developing Hashimoto's thyroiditis last year when the EN started. I'm so happy you've found relief. I've been so fortunate to be able to have Stanford-affiliated doctors that seem to know a lot about EN. I love my rheumatologist, she knew right away that I would probably get relief from the Plaquenil. I'm still on it, it has been 8 months, and I'll probably stay on it for another 4 to 6 months, until my immune system finally settles down back to normal. At least we both have something now to fall back on if we go off the Plaquenil and another bout of EN crops up. Good luck in your continued recovery! April EN 5/07 > > i have had EN for a long time and never found anything that really > helped me. the past two years i have been miserable with no relief, > then a member suggested plaquenil..that day she gave me my life back. > i have been on this medicine since july and have been knot free for > over a month. i still dont know my trigger and i am still afraid that > it could come back at any time..but i am living for today and i am so > happy and amazed at the fact that i am living again. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 i have been on plaquenil for so many years i forget how long. I was recently dianosed with sarcoidosis with erythema nodosum and I do not my trigger point. One is stress and the other is if I have stood on my legs too long and too much exposure to the sun. I swim three times a week for the stress and it also helps because I have neuropathy brought on by lupus, but Yaweh is in control Be blessed all, Kathy > > Yippppeeeeee. > What a great praise to hear...........thanks. > Keep getting better > ni > Alpha One Antitrypsin Deficiency with severe Panniculitis > Atlanta, GA > > ~~~~~~~ > " I thank my God every time I remember you. In all my prayers for all of > you, I always pray with joy. " (Philippians 1:3,4) > > > In a message dated 10/2/2008 3:39:03 P.M. Eastern Daylight Time, > allegras7@... writes: > > > > > i have had EN for a long time and never found anything that really > helped me. the past two years i have been miserable with no relief, > then a member suggested plaquenil..that day she gave me my life back. > i have been on this medicine since july and have been knot free for > over a month. i still dont know my trigger and i am still afraid that > it could come back at any time..but i am living for today and i am so > happy and amazed at the fact that i am living again. > > > > > > > > > **************Looking for simple solutions to your real-life financial > challenges? Check out WalletPop for the latest news and information, tips and > calculators. (http://www.walletpop.com/? NCID=emlcntuswall00000001) > Quote Link to comment Share on other sites More sharing options...
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