Re: New Medication, Tests, miserable and needing advice

[Guest guest]

hi sarah,about 1/2 of us are idiopathic--no known en trigger. try to rest yourself into remission. i know it is easier said than done. bed rest, leg elevation, compression bandages or stockings--cold compresses or soaks. and it may take weeks or months...don't trick yourself into thinking you are well if you feel better. very gradually get back on your feet. and continue to use the bandages and cold compresses daily. this is how i finally got into remission after 41 YRS. i never took drugs. changes in diet never helped. i had no trigger that ever showed up. I've now been in total remission for over 3 yrs. i don't need the compression stocking any more...discovered that as i broke my hand

last month and can't put it on. leg is doing fine. typing with my left hand as my right is in a hard cast.hope you feel better soon.Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Subject: New Medication, Tests, miserable and needing adviceTo: "erythema_nodosum_Group " <erythema_nodosum_Group >Date: Tuesday, April 10, 2012, 8:28

PM

Hi all - So I have been seeing several doctors recently and I'm starting to feel like there will never be an end to this. Over 10 years of severe EN, constantly being put on prednisone, and several doctors pushing me off to the next doctor so they don't have to take the time and deal with my issues.I have always been put on prednisone for outbreaks, but because I have been on it so frequently over the last 10+yrs the doctors no longer want my body to be on it. (For those of you who are taking prednisone/have taken it in the past be aware of the many negative long lasting side effects: weight gain, decrease in bone density, behavior/mood changes, etc). Today I started Plaquenil (generic name Hydroxychloroquine). Has anyone else taken this or similar medications and

had success? I am really hopeful that this will be the answer. They said it would be a long-term medication to keep the flare ups under control. I have also been gluten-free for almost two months, but still have had 2 separate outbreaks. The doctor said it's too soon to know if the gluten-free is causing the EN. But, the gluten-free has made me feel better all-around.I've just been having a hard time lately coping with the severe outbreaks and pain. And when people ask my why I am sick all the time, or don't want to work out with them, or I am so tired..it's hard to explain to them about these 'bumps' I get on my legs and all the problems they cause.It's nice to know I am not the only one suffering, and I have to remind myself that it could be so much worse..there are people dealing with more extreme health issues. If anyone has any more advice to offer (about the

Plaquenil, gluten-free, other things they have been diagnosed with that contributed to the EN) I would greatly appreciate it. My doctors call me "perplexing" because they just can't quite figure it out what's entirely wrong.I had a positive ASO-titer test, positive for the gluten-intolerance, anemic, and a few other things came back from my blood work but nothing official, more blood tests next month when the prednisone is out of my system...just trying to get to the bottom of everything.Sorry for the long random message, and I appreciate any feedback.Best,

[Guest guest]

,I've been gluten free for almost one year and I feel great. I had several other issues as well. Hashimotos Hypothyroid, anemic, b12 deficiency etc. I got a full spectrum labs panel to determine my deficiencies. I do know if you are anemic and have to take iron, you need to take vit c with iron so it absorbs in the body. Also if you are anemic chances are you are deficient in several vitamins like all the b's. I take liquid or quick dissolving vitamins for best absorption. I get the whole exhaustion thing. I am sure a lot of us do. I could sleep 18 hours a day at my worst.I have never done the steriods as I don't want the long term issues that come with it. I was painstaking at pursuing the best doctors I could find for autoimmune as well as natural MD's who emphasized in autoimmune.I personally would look into your adrenals after all the plaquenil and prednisone. As that is a huge adrenal suppressant. Adrenal fatigue is a huge issue for EN sufferers, although most doctors do not deal with it. And do not test properly. You need a saliva test to get your adrenal readings. It can really complicate EN.I would also jump into the gluten free and just embrace it. You well feel so much better. And there is so many resources now than ever before.Wishing you wellness.ml ML Gemmill Hi all - So I have been seeing several doctors recently and I'm starting to feel like there will never be an end to this. Over 10 years of severe EN, constantly being put on prednisone, and several doctors pushing me off to the next doctor so they don't have to take the time and deal with my issues.I have always been put on prednisone for outbreaks, but because I have been on it so frequently over the last 10+yrs the doctors no longer want my body to be on it. (For those of you who are taking prednisone/have taken it in the past be aware of the many negative long lasting side effects: weight gain, decrease in bone density, behavior/mood changes, etc). Today I started Plaquenil (generic name Hydroxychloroquine). Has anyone else taken this or similar medications and had success? I am really hopeful that this will be the answer. They said it would be a long-term medication to keep the flare ups under control. I have also been gluten-free for almost two months, but still have had 2 separate outbreaks. The doctor said it's too soon to know if the gluten-free is causing the EN. But, the gluten-free has made me feel better all-around.I've just been having a hard time lately coping with the severe outbreaks and pain. And when people ask my why I am sick all the time, or don't want to work out with them, or I am so tired..it's hard to explain to them about these 'bumps' I get on my legs and all the problems they cause.It's nice to know I am not the only one suffering, and I have to remind myself that it could be so much worse..there are people dealing with more extreme health issues. If anyone has any more advice to offer (about the Plaquenil, gluten-free, other things they have been diagnosed with that contributed to the EN) I would greatly appreciate it. My doctors call me "perplexing" because they just can't quite figure it out what's entirely wrong.I had a positive ASO-titer test, positive for the gluten-intolerance, anemic, and a few other things came back from my blood work but nothing official, more blood tests next month when the prednisone is out of my system...just trying to get to the bottom of everything.Sorry for the long random message, and I appreciate any feedback.Best,

[Guest guest]

concurring with everything Louise said. I feel like adrenal issues probably played into my outbreak. EN is not the first autoimmune outbreak I had, it is just my most recent. My mom has suffered from autoimmune diseases her whole life, but mine has laid mainly dormant until I turned 40. I have been completely free of all autoimmune issues though since going gluten free. I thikn the other factors Louise mentioned do need to be taken into account. You cannot go wrong going GF in my opinion and it does take time to heal. (like your docs said). I have confidence that by correcting that and the other things ML mentioned you can get into remission and stay there. That is my hope for you! Your body has a lot of recovering to do.chantelle

,I've been gluten free for almost one year and I feel great. I had several other issues as well. Hashimotos Hypothyroid, anemic, b12 deficiency etc. I got a full spectrum labs panel to determine my deficiencies. I do know if you are anemic and have to take iron, you need to take vit c with iron so it absorbs in the body. Also if you are anemic chances are you are deficient in several vitamins like all the b's. I take liquid or quick dissolving vitamins for best absorption. I get the whole exhaustion thing. I am sure a lot of us do. I could sleep 18 hours a day at my worst.I have never done the steriods as I don't want the long term issues that come with it. I was painstaking at pursuing the best doctors I could find for autoimmune as well as natural MD's who emphasized in autoimmune.I personally would look into your adrenals after all the plaquenil and prednisone. As that is a huge adrenal suppressant. Adrenal fatigue is a huge issue for EN sufferers, although most doctors do not deal with it. And do not test properly. You need a saliva test to get your adrenal readings. It can really complicate EN.I would also jump into the gluten free and just embrace it. You well feel so much better. And there is so many resources now than ever before.Wishing you wellness.ml ML Gemmill Hi all - So I have been seeing several doctors recently and I'm starting to feel like there will never be an end to this. Over 10 years of severe EN, constantly being put on prednisone, and several doctors pushing me off to the next doctor so they don't have to take the time and deal with my issues.I have always been put on prednisone for outbreaks, but because I have been on it so frequently over the last 10+yrs the doctors no longer want my body to be on it. (For those of you who are taking prednisone/have taken it in the past be aware of the many negative long lasting side effects: weight gain, decrease in bone density, behavior/mood changes, etc). Today I started Plaquenil (generic name Hydroxychloroquine). Has anyone else taken this or similar medications and had success? I am really hopeful that this will be the answer. They said it would be a long-term medication to keep the flare ups under control. I have also been gluten-free for almost two months, but still have had 2 separate outbreaks. The doctor said it's too soon to know if the gluten-free is causing the EN. But, the gluten-free has made me feel better all-around.I've just been having a hard time lately coping with the severe outbreaks and pain. And when people ask my why I am sick all the time, or don't want to work out with them, or I am so tired..it's hard to explain to them about these 'bumps' I get on my legs and all the problems they cause.It's nice to know I am not the only one suffering, and I have to remind myself that it could be so much worse..there are people dealing with more extreme health issues. If anyone has any more advice to offer (about the Plaquenil, gluten-free, other things they have been diagnosed with that contributed to the EN) I would greatly appreciate it. My doctors call me "perplexing" because they just can't quite figure it out what's entirely wrong.I had a positive ASO-titer test, positive for the gluten-intolerance, anemic, and a few other things came back from my blood work but nothing official, more blood tests next month when the prednisone is out of my system...just trying to get to the bottom of everything.Sorry for the long random message, and I appreciate any feedback.Best,