Guest guest Posted June 6, 2012 Report Share Posted June 6, 2012 Hi I was diagnosed with EN a couple of years ago as I got really bad joint pain in almost every joint and then red lumps/bruises on my legs, I also had diarrhea every monring for about 4 weeks before the joint pain. I came off the pill thinking it was that but was later diagnosed with sarcoidosis after a biobsy was done on a patch of skin on my arm where a few small raised bumps had come out (the size of a pimple but a few of them in a circle). Sarcoidosis can affect the main organs but apparently can be managed, with me it didn't affect the organs and I haven't had any problems since, I was told it would just go away without treatment and it did. Thinking back I think I did have a cough at the time and felt very tired in the afternoons, at the time my youngest was 1 and oldest 3 so put it down to that but could easily have slept at 3pm every day. I hope this is the same for your daughter and she makes a full recovery. There are some useful links on this if you want me to put up I will. Good luck to your daughter. Take care. Geraldine. To: "erythema_nodosum_Group " <erythema_nodosum_Group > Sent: Wednesday, 6 June 2012, 11:40 Subject: EN & my daughter My daughter is 15 years old. She has a chromosomal abnormality called s Syndrome. Due to this her ovaries do not function. She has been taking a hormone replacement (birth control pill) for approx. 18 months. In March her psoriais flared, she had a bout of vomitting and then presented with red "blotches" on her lower legs. On 4/6/2012 her lower legs swelled. Since then it's been a roller coaster! Several rounds of bloodwork...her SED rate was very high. She's had a persistent dry cough, a fever off and on, legs, feet and ankles swollen. Both the rheumatiologist and dermatologist diagnosed EN caused by the birth control pill. I spoke with her endocrynologist and we stopped the pill. That was approx. 17 days ago. The swelling in her legs is gone. Her ankles and feet do still swell though not as badly. Unfortunately she is having hot and cold flashes due to the lack of hormones. Her coughing and the fever are still ongoing. Her fever may be down in the morning and 101 degrees by evening. She has been taking 600 mg. of motrin/6hrs. per the dermatologist. Her fever does respond to this. She was also found to be anemic and takes an iron supplement daily. She has also taken two rounds of oral steroids. The EN did respond to the steroids but returned within days of her finishing the steroids. Her psoroiasis is currently under control. Today she is having more bloodwork done and also is getting a chest CT scan. The rheumatologist is trying to find the cause of the cough. She has mentioned Sarcoidosis. If anyone can shed some light on this it would be greatly appreciated. Are a cough and fever often associated with EN? Thank You,A very concerned mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2012 Report Share Posted June 6, 2012 Hi there. When I first had my onset a few months ago, I had a sudden cough with " lung cookies " which totally suprised me as I wasnt ill. I had a mild cough and sore throat for about a third of this outbreak. Sarcoidosis was also on my battery of tests (neg). I have a brother with Klinefelters(male version of s) and was screened for it twice as requested by my mother paranoid about my weight. Good luck to your daughter. I am going to ask my brother if he has ever had EN symptoms.... > > My daughter is 15 years old. She has a chromosomal abnormality called s Syndrome. Due to this her ovaries do not function. She has been taking a hormone replacement (birth control pill) for approx. 18 months. > > In March her psoriais flared, she had a bout of vomitting and then presented with red " blotches " on her lower legs. On 4/6/2012 her lower legs swelled. Since then it's been a roller coaster! Several rounds of bloodwork...her SED rate was very high. She's had a persistent dry cough, a fever off and on, legs, feet and ankles swollen. Both the rheumatiologist and dermatologist diagnosed EN caused by the birth control pill. I spoke with her endocrynologist and we stopped the pill. That was approx. 17 days ago. The swelling in her legs is gone. Her ankles and feet do still swell though not as badly. Unfortunately she is having hot and cold flashes due to the lack of hormones. Her coughing and the fever are still ongoing. Her fever may be down in the morning and 101 degrees by evening. She has been taking 600 mg. of motrin/6hrs. per the dermatologist. Her fever does respond to this. She was also found to be anemic and takes > an iron supplement daily. She has also taken two rounds of oral steroids. The EN did respond to the steroids but returned within days of her finishing the steroids. Her psoroiasis is currently under control. Today she is having more bloodwork done and also is getting a chest CT scan. The rheumatologist is trying to find the cause of the cough. She has mentioned Sarcoidosis. > > If anyone can shed some light on this it would be greatly appreciated. Are a cough and fever often associated with EN? > > Thank You, > A very concerned mother > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2012 Report Share Posted June 6, 2012 My first onset of EN happened when I was 15. It happened after the doctor prescribed birth control pills. Which I got off after the lumps. But I do know Birth Control Pills are linked to EN as a trigger (there are something like 600 triggers, which has a list).I don't know much about s. I do know that those with 's have issues with auto immune, thyroid function, adrenals etc. Have you had her tested for food allergies? Milk, Soy, Gluten? Sometimes an allergy can bring on autoimmune issues.I would take her off all gluten, as gluten wreaks havoc on the immune system. I have been gluten free for 1 year and had the best year with no lumps. My energy is also up. I would also get her hormone levels checked. I don't know if she has no hormone levels due to s or an excess of one. The best doctors for this will use compound pharmacy hormones and not synthetic. I would get her off any hormone inflated foods and do a strict organic foods diet.I don't know if you have had her thyroid tested. You would want all thyroid levels checked. A full thyroid panel (TSH, T4, Free T4, Free T3). There's a great book called, Stop The Thyroid Madness (2nd edition). Once I got on the right thyroid med I was night and day better. Example: I am on NatureThroid for my thyroid, I was on Synthroid and Levethyroxine (synthetic) and that messed me up. The change to a natural dessicated thyroid saved my life. Same with hormones. I have them made at a compound pharmacy.The most important thing is finding a great doctor willing to step outside the box and really investigate. Example you said your daughter is low on iron, but are you taking vitamin c with the iron. Iron needs vitamin c to absorb properly. And most people who are low on Iron will have B12 deficiencies and Vit D deficiencies. So getting a whole nutrition panel is really important. Spectral labs does a very comprehensive panel with detailed reporting.I too had fever. I did ice on my legs and ice water soaks. I did steriods once and never wanted to to them again. Steriods mess with the adrenals. I've had more chest scans than I can count. Another thing that really helped my legs was Braggs Organic Apple Cider Vinegar with the mother in it. I would soak a paper towel and rest them on my lumps and it would diminish them faster than anything. It does stink, but it works. Perhaps because of the potassium. I'm not sure. Also elevate her legs as much as possible.I have gone to over a 100 doctors in my life time. All over the world. I can count on one hand the best doctors. I see one in La Jolla California now who is brilliant. Wishing your daughter wellness, ML GemmillEN 1976 My daughter is 15 years old. She has a chromosomal abnormality called s Syndrome. Due to this her ovaries do not function. She has been taking a hormone replacement (birth control pill) for approx. 18 months. In March her psoriais flared, she had a bout of vomitting and then presented with red "blotches" on her lower legs. On 4/6/2012 her lower legs swelled. Since then it's been a roller coaster! Several rounds of bloodwork...her SED rate was very high. She's had a persistent dry cough, a fever off and on, legs, feet and ankles swollen. Both the rheumatiologist and dermatologist diagnosed EN caused by the birth control pill. I spoke with her endocrynologist and we stopped the pill. That was approx. 17 days ago. The swelling in her legs is gone. Her ankles and feet do still swell though not as badly. Unfortunately she is having hot and cold flashes due to the lack of hormones. Her coughing and the fever are still ongoing. Her fever may be down in the morning and 101 degrees by evening. She has been taking 600 mg. of motrin/6hrs. per the dermatologist. Her fever does respond to this. She was also found to be anemic and takes an iron supplement daily. She has also taken two rounds of oral steroids. The EN did respond to the steroids but returned within days of her finishing the steroids. Her psoroiasis is currently under control. Today she is having more bloodwork done and also is getting a chest CT scan. The rheumatologist is trying to find the cause of the cough. She has mentioned Sarcoidosis. If anyone can shed some light on this it would be greatly appreciated. Are a cough and fever often associated with EN? Thank You,A very concerned mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Geraldine, I to have sarcoidosis. I was on steroids for about 8 months before it went away. This was a few years ago. I think I'm getting it back again. I have bad joint pain and it's very hard to walk because of this. I think the lumps might be back again. Also I go around very tired. I can spend most of Sat. sleeping. I have my cough again very day. I don't want it to start again but I think it is. Sally From: Geraldine Hoban To: "erythema_nodosum_Group " <erythema_nodosum_Group > Sent: Wednesday, June 6, 2012 7:00 AM Subject: Re: EN & my daughter Hi I was diagnosed with EN a couple of years ago as I got really bad joint pain in almost every joint and then red lumps/bruises on my legs, I also had diarrhea every monring for about 4 weeks before the joint pain. I came off the pill thinking it was that but was later diagnosed with sarcoidosis after a biobsy was done on a patch of skin on my arm where a few small raised bumps had come out (the size of a pimple but a few of them in a circle). Sarcoidosis can affect the main organs but apparently can be managed, with me it didn't affect the organs and I haven't had any problems since, I was told it would just go away without treatment and it did. Thinking back I think I did have a cough at the time and felt very tired in the afternoons, at the time my youngest was 1 and oldest 3 so put it down to that but could easily have slept at 3pm every day. I hope this is the same for your daughter and she makes a full recovery. There are some useful links on this if you want me to put up I will. Good luck to your daughter. Take care. Geraldine. To: "erythema_nodosum_Group " <erythema_nodosum_Group > Sent: Wednesday, 6 June 2012, 11:40 Subject: EN & my daughter My daughter is 15 years old. She has a chromosomal abnormality called s Syndrome. Due to this her ovaries do not function. She has been taking a hormone replacement (birth control pill) for approx. 18 months. In March her psoriais flared, she had a bout of vomitting and then presented with red "blotches" on her lower legs. On 4/6/2012 her lower legs swelled. Since then it's been a roller coaster! Several rounds of bloodwork...her SED rate was very high. She's had a persistent dry cough, a fever off and on, legs, feet and ankles swollen. Both the rheumatiologist and dermatologist diagnosed EN caused by the birth control pill. I spoke with her endocrynologist and we stopped the pill. That was approx. 17 days ago. The swelling in her legs is gone. Her ankles and feet do still swell though not as badly. Unfortunately she is having hot and cold flashes due to the lack of hormones. Her coughing and the fever are still ongoing. Her fever may be down in the morning and 101 degrees by evening. She has been taking 600 mg. of motrin/6hrs. per the dermatologist. Her fever does respond to this. She was also found to be anemic and takes an iron supplement daily. She has also taken two rounds of oral steroids. The EN did respond to the steroids but returned within days of her finishing the steroids. Her psoroiasis is currently under control. Today she is having more bloodwork done and also is getting a chest CT scan. The rheumatologist is trying to find the cause of the cough. She has mentioned Sarcoidosis. If anyone can shed some light on this it would be greatly appreciated. Are a cough and fever often associated with EN? Thank You,A very concerned mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Hi Rebeca and the group: I am a crohns sufferer...and EN...I have been treated with Humira...originally for its influence on fistulas...humira is also for the treatment of arthritis...I do not have a clear trigger for any of the symptoms I suffer from...they all seem to take their turns...I also suffer from arthritis... My EN...just seems to run its course with out any change in treatments (additional rest and elevation of legs seems to help...and additional sleep)..I did find a article regarding humira and EN...they found a positive result...(attached). I guess there could be more research between humira and EN...I am not sure how that might happen....but the vector might be from crohns patients...documenting their EN and humira... I imagine if you have crohns and suffer from EN...you might try the humira...I was able to qualify for the meds at no cost from the manufacture of humira...as it is a pricey drug...I guess its the benefit of being so sick you can't function...hahaha Anyway...I am wondering if it could help the joint and leg pain...I am experiencing less of that type of pain...but it also is related to my physical activity...more active more pain.....So your response might be different...But Over all...I do have less EN episodes since using humira... It all seems along the same mystic chemical activity in our systems...(crohns, arthritis, EN..) So maybe the humira could lead to a true treatment...I am not certain it is a "cure all"...but somewhere with in our systems...there could be a connection. Best wishes to all....This group is a true blessing! peace and love Wynand--------------------------------------------------------------------------------------------------------------------------- Subject: Re: EN & my daughterTo: "erythema_nodosum_Group " <erythema_nodosum_Group >Date: Tuesday, June 12, 2012, 12:11 PM Geraldine, I to have sarcoidosis. I was on steroids for about 8 months before it went away. This was a few years ago. I think I'm getting it back again. I have bad joint pain and it's very hard to walk because of this. I think the lumps might be back again. Also I go around very tired. I can spend most of Sat. sleeping. I have my cough again very day. I don't want it to start again but I think it is. Sally From: Geraldine Hoban To: "erythema_nodosum_Group " <erythema_nodosum_Group > Sent: Wednesday, June 6, 2012 7:00 AM Subject: Re: EN & my daughter Hi I was diagnosed with EN a couple of years ago as I got really bad joint pain in almost every joint and then red lumps/bruises on my legs, I also had diarrhea every monring for about 4 weeks before the joint pain. I came off the pill thinking it was that but was later diagnosed with sarcoidosis after a biobsy was done on a patch of skin on my arm where a few small raised bumps had come out (the size of a pimple but a few of them in a circle). Sarcoidosis can affect the main organs but apparently can be managed, with me it didn't affect the organs and I haven't had any problems since, I was told it would just go away without treatment and it did. Thinking back I think I did have a cough at the time and felt very tired in the afternoons, at the time my youngest was 1 and oldest 3 so put it down to that but could easily have slept at 3pm every day. I hope this is the same for your daughter and she makes a full recovery. There are some useful links on this if you want me to put up I will. Good luck to your daughter. Take care. Geraldine. To: "erythema_nodosum_Group " <erythema_nodosum_Group > Sent: Wednesday, 6 June 2012, 11:40 Subject: EN & my daughter My daughter is 15 years old. She has a chromosomal abnormality called s Syndrome. Due to this her ovaries do not function. She has been taking a hormone replacement (birth control pill) for approx. 18 months. In March her psoriais flared, she had a bout of vomitting and then presented with red "blotches" on her lower legs. On 4/6/2012 her lower legs swelled. Since then it's been a roller coaster! Several rounds of bloodwork...her SED rate was very high. She's had a persistent dry cough, a fever off and on, legs, feet and ankles swollen. Both the rheumatiologist and dermatologist diagnosed EN caused by the birth control pill. I spoke with her endocrynologist and we stopped the pill. That was approx. 17 days ago. The swelling in her legs is gone. Her ankles and feet do still swell though not as badly. Unfortunately she is having hot and cold flashes due to the lack of hormones. Her coughing and the fever are still ongoing. Her fever may be down in the morning and 101 degrees by evening. She has been taking 600 mg. of motrin/6hrs. per the dermatologist. Her fever does respond to this. She was also found to be anemic and takes an iron supplement daily. She has also taken two rounds of oral steroids. The EN did respond to the steroids but returned within days of her finishing the steroids. Her psoroiasis is currently under control. Today she is having more bloodwork done and also is getting a chest CT scan. The rheumatologist is trying to find the cause of the cough. She has mentioned Sarcoidosis. If anyone can shed some light on this it would be greatly appreciated. Are a cough and fever often associated with EN? Thank You,A very concerned mother 1 of 1 File(s) erit.nod-07.pdf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 Hi Wynand, That is a very interesting observation. I found this message board and it seems quite a few found that humira brought on EN! Nothing seems to help everyone--but it is worth a try if nothing else has worked. http://treato.com/Humira,Erythema+Nodosum/?a=s I am idiopathic and found that leg elevation and ice water compresses along with support bandages or knee highs helped me. I never did try medication as my EN usually did not last that long and I could " sleep it off " over a weekend--at least in the beginning. Love, Going on 4 yrs of EN remission--Yeaaaa! > > Hi Rebeca and the group: > >  I am a crohns sufferer...and EN...I have been treated with Humira...originally for its influence on fistulas...humira is also for the treatment of arthritis...I do not have a clear trigger for any of the symptoms I suffer from...they all seem to take their turns...I also suffer from arthritis... > >   My EN...just seems to run its course with out any change in treatments (additional rest and elevation of legs seems to help...and additional sleep)..I did find a article regarding humira and EN...they found a positive result...(attached). > >  I guess there could be more research between humira and EN...I am not sure how that might happen....but the vector might be from crohns patients...documenting their EN and humira... > >   I imagine if you have crohns and suffer from EN...you might try the humira...I was able to qualify for the meds at no cost from the manufacture of humira...as it is a pricey drug...I guess its the benefit of being so sick you can't function...hahaha > >   Anyway...I am wondering if it could help the joint and leg pain...I am experiencing less of that type of pain...but it also is related to my physical activity...more active more pain.....So your response might be different...But Over all...I do have less EN episodes since using humira... > >   It all seems along the same mystic chemical activity in our > Quote Link to comment Share on other sites More sharing options...
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