Re: Newbie - Any advice appreciated please!

[Guest guest]

Hi Caroline! I have just joined the group too so I guess we're both newbies!

My EN started on my left shin in August 2006, was resolved with long-term use of

Prednisone (with all the wonderful things that go with taking it), was EN-free

for just over a year and last August (again) they came back, but this time on my

other leg. It seems that one heals and another two take its' place. Now

they've started on my left ankle.

I have had numerous tests to determine the cause, to no avail. I've been under

a great amount of stress the past year and 1/2 and I believe that mine was

caused by stress screwing with my immune system. I have a new doctor who is

stumped and on my last visit, he ordered a strong anti-inflammatory (Celebrex),

regular tylenol for the pain (when you're on anti-inflammatories, Advil is a bad

idea) and a narcotic painkiller to help with the pain at night.

One thing I've tried, and sort-of works, is the pain meds for sure, but also, my

husband will rub where the edema is around the ankle with Bio-Oil and it always

feels better after that. Raising my feet up so that the swelling drains helps

too, as well as cold compresses and warm baths eith epsom salts. The pain keeps

me from walkiing, doing any kind of work on my feet (unless I take pain meds

first) and, of course, also keeps me from sleeping well.

They are supposed to be self-limiting, but I don't see that in my case. They

get worse, better, worse again, more pop up, the area swells and makes it

painful to even just rotate my ankle... it can be very frustrating, especially

if you can't find the cause. I understand where you're coming from, and hope we

can help each other cope!

>

> Hi everyone,

>

> I have just joined the group. Need some advice on several things but a bit of

background fiurst! - It was about 6 weeks ago I first noticed a couple of bumps

on the back of my calves that looked like insect bites.

>

> Over the next few weeks there became more and more of them. I went to the doc

and because I have a cat she said it looked like I had had a reaction to flea

bites.

>

> I wasn't convinced so I googled the sypmtoms and came to the conclusion I had

EN. I went back to see another doctor and he confirmed this. We don't know the

cause. About a week after I first got the lumps I had a sore throat which lasted

4 or 5 days but that's gone now. The doc said it can be caused by a sterp virus?

He didn't do any tests, just said take ibuprofen and it should subside on it's

own over time.

>

> However I am wondering whether it is a drug reaction. I was on Minocycline for

4 months for Acne cea, it was working fine but I was worried about

continuing on antibiotics for so long so I was put on Oxytetrcycline as

apparently it was safer long term. Well within a few days of being on this my

face broke out in tons of little pimples under my skin so I stopped them

immediately. Then about a week later I got EN symptoms. Could it be a delayed

reaction?

>

> 6 weeks on they show no sign of going. I have the lumps on both calves, last

week they broke out on the side of my thighs and a couple on each forearm. I

have a very painful area on one knee, both ankles are swollen and one foot!

>

> One last thing - does alcohol make symtoms worse? Symtpoms seemd to go down on

Thursday and I was thinking great maybe it's on it's way out. However I was last

night and had several drinks and this morning, well, it was worse than ever! My

skin all over both calves was very red and tight and shiny looking, one lump

appears to have dry scab type skin on it and I could barely walk :-(

>

> Anyway sorry to have waffled for ages. I had never heard of this weird

condition until I got it. The body is an odd thing! I am scared it will never go

away! Summer is coming and the thought of hiding my legs under trousers all

summer is depressing. They look so ugle and I'm sick of the pain!

>

> Caroline xx

>

[Guest guest]

Hi Caroline and ,I haven't participated in the forum for some time, however I thought it timely as there are newcomers to this website all the time, and although this site does not have all the answers, what helps is the knowledge that we are not alone.It is an unfortunate fact that the medical profession will deal with the symptoms but not necessarily the causes of EN, as it is simply too difficult to do so, as we are all reacting to different things. It took me 25 years to discover that I didn't have and underlying TB condition, nor did I have Strep Throat 3 times a year, nor was I stressed out continuously. I did however have digestive problems and chronic constipation, both of which the doctors informed me were unrelated to ER. I think, however, they were wrong. Many times I went to various Naturopaths who suggested I turn to a vegetarian diet (I lost most of my hair doing this), or suggesting that I try Chinese Herbs (I had an EN attack soon after), I finally went separately but simultaneously to a Naturopath and a Homeopath who both suggested that I try looking at Food Allergies. It seems that I have been allergic to Gluten, not as severe as a Coeliac, but enough to damage my immune system, so that now I am allergic to a number of other foods as well.Can I suggest that you try being tested for food allergies, as treating EN with prednisone for years can add further complications to your lives.Good Luck, remember that your trigger may not necessarily be the same as the next person's trigger.Vicki Hi Caroline! I have just joined the group too so I guess we're both newbies! My EN started on my left shin in August 2006, was resolved with long-term use of Prednisone (with all the wonderful things that go with taking it), was EN-free for just over a year and last August (again) they came back, but this time on my other leg. It seems that one heals and another two take its' place. Now they've started on my left ankle. I have had numerous tests to determine the cause, to no avail. I've been under a great amount of stress the past year and 1/2 and I believe that mine was caused by stress screwing with my immune system. I have a new doctor who is stumped and on my last visit, he ordered a strong anti-inflammatory (Celebrex), regular tylenol for the pain (when you're on anti-inflammatories, Advil is a bad idea) and a narcotic painkiller to help with the pain at night. One thing I've tried, and sort-of works, is the pain meds for sure, but also, my husband will rub where the edema is around the ankle with Bio-Oil and it always feels better after that. Raising my feet up so that the swelling drains helps too, as well as cold compresses and warm baths eith epsom salts. The pain keeps me from walkiing, doing any kind of work on my feet (unless I take pain meds first) and, of course, also keeps me from sleeping well. They are supposed to be self-limiting, but I don't see that in my case. They get worse, better, worse again, more pop up, the area swells and makes it painful to even just rotate my ankle... it can be very frustrating, especially if you can't find the cause. I understand where you're coming from, and hope we can help each other cope! > > Hi everyone, > > I have just joined the group. Need some advice on several things but a bit of background fiurst! - It was about 6 weeks ago I first noticed a couple of bumps on the back of my calves that looked like insect bites. > > Over the next few weeks there became more and more of them. I went to the doc and because I have a cat she said it looked like I had had a reaction to flea bites. > > I wasn't convinced so I googled the sypmtoms and came to the conclusion I had EN. I went back to see another doctor and he confirmed this. We don't know the cause. About a week after I first got the lumps I had a sore throat which lasted 4 or 5 days but that's gone now. The doc said it can be caused by a sterp virus? He didn't do any tests, just said take ibuprofen and it should subside on it's own over time. > > However I am wondering whether it is a drug reaction. I was on Minocycline for 4 months for Acne cea, it was working fine but I was worried about continuing on antibiotics for so long so I was put on Oxytetrcycline as apparently it was safer long term. Well within a few days of being on this my face broke out in tons of little pimples under my skin so I stopped them immediately. Then about a week later I got EN symptoms. Could it be a delayed reaction? > > 6 weeks on they show no sign of going. I have the lumps on both calves, last week they broke out on the side of my thighs and a couple on each forearm. I have a very painful area on one knee, both ankles are swollen and one foot! > > One last thing - does alcohol make symtoms worse? Symtpoms seemd to go down on Thursday and I was thinking great maybe it's on it's way out. However I was last night and had several drinks and this morning, well, it was worse than ever! My skin all over both calves was very red and tight and shiny looking, one lump appears to have dry scab type skin on it and I could barely walk :-( > > Anyway sorry to have waffled for ages. I had never heard of this weird condition until I got it. The body is an odd thing! I am scared it will never go away! Summer is coming and the thought of hiding my legs under trousers all summer is depressing. They look so ugle and I'm sick of the pain! > > Caroline xx >

[Guest guest]

Hi Caroline,

My 18 year old daughter has EN. She was on minocycline for just under three

months when her legs started with the symptoms. After traveling and seeing many

doctors abroad,for more different opinions and doing a biopsy she was told it

was a drug reaction that caused her to get the auto immune disease she now has

which is cutaneous poly artheristis nodosa and the EN is a symptom of this...

She was prescribed prednisone ( which did not help ) and now she is on colchine

twice daily. She gets flare ups when she is stressed at school. She also gets

sore throat often for a few days and then it just goes away. She sometimes gets

joint pain in one ankle but not swelling. All the rhumetologists she saw all

said all this stemmed from the minocycline.

I wish you and everyone all the best. She still gets it but we were lucky we

found the underlying cause so we treat it and it slows down her EN at times. It

has been 2 years now

Best regards

a.

Sent from my BlackBerry® wireless device available from bmobile.

[Guest guest]

Hi a,

I'm also new to the site. I was diagnosed with EN in January. My

rheumatologist put me on low dose Prednisone that didn't work. He then consulted

with a Dermatologist who did the biopsy on the biggest nodule available at that

time and diagnosed me of Polyarterities Nodusa which you already know is an

autoimmune disorder.

At present I'm on high dose Prednisone and Methotrexate. The goal of the

treatment is to put me on remission and will just be on low dose of the above

medication and could go back to work. I get very very weak the day after I take

the Methotrexate and I get lethargic after I take the prednisone after

breakfast. To complicate things, I also have DM 2 so I'm constantly monitoring

what I eat and my blood sugars.

I'm glad your daughter can attend school. My prayer is that I can go back

to even just a modified light duty at work in due time.

Best regards,

Estela

Sent from my iPad

> Hi Caroline,

>

> My 18 year old daughter has EN. She was on minocycline for just under three

months when her legs started with the symptoms. After traveling and seeing many

doctors abroad,for more different opinions and doing a biopsy she was told it

was a drug reaction that caused her to get the auto immune disease she now has

which is cutaneous poly artheristis nodosa and the EN is a symptom of this...

She was prescribed prednisone ( which did not help ) and now she is on colchine

twice daily. She gets flare ups when she is stressed at school. She also gets

sore throat often for a few days and then it just goes away. She sometimes gets

joint pain in one ankle but not swelling. All the rhumetologists she saw all

said all this stemmed from the minocycline.

> I wish you and everyone all the best. She still gets it but we were lucky we

found the underlying cause so we treat it and it slows down her EN at times. It

has been 2 years now

> Best regards

> a.

> Sent from my BlackBerry® wireless device available from bmobile.

>

> ------------------------------------

>

> You can help Erythema Nodosum Research. Just go to

> http://www.goodsearch.com/

> and under the I'm Supporting section enter Erythema Nodosum Research Fund.

Every time you use Goodsearch to search, a penny will be donated to EN Research.

> NOW you can also GoodShop for Erythema Nodosum. All your favorites including

Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop

for. So sign up today, and be sure to tell your friends, family and co-workers.

Let's find a cure for Erythema Nodosum!

>

>

>

[Guest guest]

I've had EN for 35 years. At first, when I was younger, I did everything the MD's told me to do. Antibiotics and steriods. All made me sicker. If you decide to get off the steriods, do it slowly and under supervision as it can really mess you up doing it suddenly. When I started watching what I ate and how I managed my stress, I would get better. So I knew I was on to something.By far the absolute best thing to do with EN is go GLUTEN FREE. You will see a dramatic difference in your energy and breakouts. I've been gluten free for almost one year with ZERO breakouts. Avoid Soy and anything that is non organic, like hormone inflated foods, meats, dairy products. I would also suggest thyroid tests, (to make sure your thyroid is functioning properly), I've included the tests they suggest and list in Stop The Thyroid Madness, the bible for those who have thyroid disorders, which can trigger EN:TSH But this lab is only for diagnosis of hypopituitary, NOT to diagnose or dose your hypo by.Free T4 and Free T3 (note the word “free”–important since it measures what is unbound and available.)Reverse T3–to be done at the same time you do the Free T3. Then calculate your ratio with the results and measurements.Thyroid Antibodies (anti-TPO and TgAb. YOU NEED BOTH.)Four iron labs, which include Ferritin, % Saturation, TIBC and serum iron Adrenal Cortisol levels (but we strongly recommend saliva tests, not the one time blood test your doctor will do. One result does not tell the whole story. See below, because you don’t need a prescription)B-12 and FolateMagnesium and Potassium, plus Calcium, Sodium, Glucose (All the latter are part of the Comprehensive Metabolic Profile–CMP blood test–as well. You can also ask for the RBC (Red Blood Cell) versions of Mag. and Pot, which measures cellular levels.) For potassium, make sure the rubber tourniquet is not left on more than 60 seconds, says this study. Also note that the Buccal Mg lab test is finally available and seems to be more correlated to cardiac health than RBC Mg,but is expensive and not always easy to get.)Vitamin D3 (25-hydroxyvitamin D lab test…)Getting a nutritional panel such as SpectraCell's Micro Nutrient Testing (to accurately determine wether you are deficient in a necessary vitamins and minerals. I was deficient in multiple vitamins and minerals: Iron, C, D, Selenium, Calcium, Magnesium the list was quite long for me.Then I would try to rule out any possible underlying auto immune issue that might have been the trigger. Mine is Hashimotos hypothyroidism (thyroid), adrenal fatigue, hormones and Strep. There are hundreds of triggers. So this could be a long process. At the very least, just go GLUTEN FREE and see what happens. Please let us know how it goes. Several members have gone gluten free and have been free of EN.wishing you wellness.ml ML GemmillWriter - Creative Ideator Hi a, I'm also new to the site. I was diagnosed with EN in January. My rheumatologist put me on low dose Prednisone that didn't work. He then consulted with a Dermatologist who did the biopsy on the biggest nodule available at that time and diagnosed me of Polyarterities Nodusa which you already know is an autoimmune disorder. At present I'm on high dose Prednisone and Methotrexate. The goal of the treatment is to put me on remission and will just be on low dose of the above medication and could go back to work. I get very very weak the day after I take the Methotrexate and I get lethargic after I take the prednisone after breakfast. To complicate things, I also have DM 2 so I'm constantly monitoring what I eat and my blood sugars. I'm glad your daughter can attend school. My prayer is that I can go back to even just a modified light duty at work in due time. Best regards, Estela Sent from my iPad > Hi Caroline, > > My 18 year old daughter has EN. She was on minocycline for just under three months when her legs started with the symptoms. After traveling and seeing many doctors abroad,for more different opinions and doing a biopsy she was told it was a drug reaction that caused her to get the auto immune disease she now has which is cutaneous poly artheristis nodosa and the EN is a symptom of this... She was prescribed prednisone ( which did not help ) and now she is on colchine twice daily. She gets flare ups when she is stressed at school. She also gets sore throat often for a few days and then it just goes away. She sometimes gets joint pain in one ankle but not swelling. All the rhumetologists she saw all said all this stemmed from the minocycline. > I wish you and everyone all the best. She still gets it but we were lucky we found the underlying cause so we treat it and it slows down her EN at times. It has been 2 years now > Best regards > a. > Sent from my BlackBerry® wireless device available from bmobile. > > ------------------------------------ > > You can help Erythema Nodosum Research. Just go to > http://www.goodsearch.com/ > and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. > NOW you can also GoodShop for Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum! > > >

[Guest guest]

Very well putChantelle Sent from my iPhone

I've had EN for 35 years. At first, when I was younger, I did everything the MD's told me to do. Antibiotics and steriods. All made me sicker. If you decide to get off the steriods, do it slowly and under supervision as it can really mess you up doing it suddenly. When I started watching what I ate and how I managed my stress, I would get better. So I knew I was on to something.By far the absolute best thing to do with EN is go GLUTEN FREE. You will see a dramatic difference in your energy and breakouts. I've been gluten free for almost one year with ZERO breakouts. Avoid Soy and anything that is non organic, like hormone inflated foods, meats, dairy products. I would also suggest thyroid tests, (to make sure your thyroid is functioning properly), I've included the tests they suggest and list in Stop The Thyroid Madness, the bible for those who have thyroid disorders, which can trigger EN:TSH But this lab is only for diagnosis of hypopituitary, NOT to diagnose or dose your hypo by.Free T4 and Free T3 (note the word “freeâ€â€“important since it measures what is unbound and available.)Reverse T3–to be done at the same time you do the Free T3. Then calculate your ratio with the results and measurements.Thyroid Antibodies (anti-TPO and TgAb. YOU NEED BOTH.)Four iron labs, which include Ferritin, % Saturation, TIBC and serum iron Adrenal Cortisol levels (but we strongly recommend saliva tests, not the one time blood test your doctor will do. One result does not tell the whole story. See below, because you don’t need a prescription)B-12 and FolateMagnesium and Potassium, plus Calcium, Sodium, Glucose (All the latter are part of the Comprehensive Metabolic Profile–CMP blood test–as well. You can also ask for the RBC (Red Blood Cell) versions of Mag. and Pot, which measures cellular levels.) For potassium, make sure the rubber tourniquet is not left on more than 60 seconds, says this study. Also note that the Buccal Mg lab test is finally available and seems to be more correlated to cardiac health than RBC Mg,but is expensive and not always easy to get.)Vitamin D3 (25-hydroxyvitamin D lab test…)Getting a nutritional panel such as SpectraCell's Micro Nutrient Testing (to accurately determine wether you are deficient in a necessary vitamins and minerals. I was deficient in multiple vitamins and minerals: Iron, C, D, Selenium, Calcium, Magnesium the list was quite long for me.Then I would try to rule out any possible underlying auto immune issue that might have been the trigger. Mine is Hashimotos hypothyroidism (thyroid), adrenal fatigue, hormones and Strep. There are hundreds of triggers. So this could be a long process. At the very least, just go GLUTEN FREE and see what happens. Please let us know how it goes. Several members have gone gluten free and have been free of EN.wishing you wellness.ml ML GemmillWriter - Creative Ideator Hi a, I'm also new to the site. I was diagnosed with EN in January. My rheumatologist put me on low dose Prednisone that didn't work. He then consulted with a Dermatologist who did the biopsy on the biggest nodule available at that time and diagnosed me of Polyarterities Nodusa which you already know is an autoimmune disorder. At present I'm on high dose Prednisone and Methotrexate. The goal of the treatment is to put me on remission and will just be on low dose of the above medication and could go back to work. I get very very weak the day after I take the Methotrexate and I get lethargic after I take the prednisone after breakfast. To complicate things, I also have DM 2 so I'm constantly monitoring what I eat and my blood sugars. I'm glad your daughter can attend school. My prayer is that I can go back to even just a modified light duty at work in due time. Best regards, Estela Sent from my iPad > Hi Caroline, > > My 18 year old daughter has EN. She was on minocycline for just under three months when her legs started with the symptoms. After traveling and seeing many doctors abroad,for more different opinions and doing a biopsy she was told it was a drug reaction that caused her to get the auto immune disease she now has which is cutaneous poly artheristis nodosa and the EN is a symptom of this... She was prescribed prednisone ( which did not help ) and now she is on colchine twice daily. She gets flare ups when she is stressed at school. She also gets sore throat often for a few days and then it just goes away. She sometimes gets joint pain in one ankle but not swelling. All the rhumetologists she saw all said all this stemmed from the minocycline. > I wish you and everyone all the best. She still gets it but we were lucky we found the underlying cause so we treat it and it slows down her EN at times. It has been 2 years now > Best regards > a. > Sent from my BlackBerry® wireless device available from bmobile. > > ------------------------------------ > > You can help Erythema Nodosum Research. Just go to > http://www.goodsearch.com/ > and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. > NOW you can also GoodShop for Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum! > > >

[Guest guest]

Yep Gluten was the key for me. My mom has severe plaque psoriasis and I suspect gluten in her case but she's lived with it her whole life so has not spent money to test yet to see if that might be the case. She knows how well stopping gluten has worked for me tho. Went from very unhealthy to healthy and I wasn't even consuming gluten on a regular basis so I thought that couldn't be itChantelleSent from my iPhone

Hi Caroline and ,I haven't participated in the forum for some time, however I thought it timely as there are newcomers to this website all the time, and although this site does not have all the answers, what helps is the knowledge that we are not alone.It is an unfortunate fact that the medical profession will deal with the symptoms but not necessarily the causes of EN, as it is simply too difficult to do so, as we are all reacting to different things. It took me 25 years to discover that I didn't have and underlying TB condition, nor did I have Strep Throat 3 times a year, nor was I stressed out continuously. I did however have digestive problems and chronic constipation, both of which the doctors informed me were unrelated to ER. I think, however, they were wrong. Many times I went to various Naturopaths who suggested I turn to a vegetarian diet (I lost most of my hair doing this), or suggesting that I try Chinese Herbs (I had an EN attack soon after), I finally went separately but simultaneously to a Naturopath and a Homeopath who both suggested that I try looking at Food Allergies. It seems that I have been allergic to Gluten, not as severe as a Coeliac, but enough to damage my immune system, so that now I am allergic to a number of other foods as well.Can I suggest that you try being tested for food allergies, as treating EN with prednisone for years can add further complications to your lives.Good Luck, remember that your trigger may not necessarily be the same as the next person's trigger.Vicki Hi Caroline! I have just joined the group too so I guess we're both newbies! My EN started on my left shin in August 2006, was resolved with long-term use of Prednisone (with all the wonderful things that go with taking it), was EN-free for just over a year and last August (again) they came back, but this time on my other leg. It seems that one heals and another two take its' place. Now they've started on my left ankle. I have had numerous tests to determine the cause, to no avail. I've been under a great amount of stress the past year and 1/2 and I believe that mine was caused by stress screwing with my immune system. I have a new doctor who is stumped and on my last visit, he ordered a strong anti-inflammatory (Celebrex), regular tylenol for the pain (when you're on anti-inflammatories, Advil is a bad idea) and a narcotic painkiller to help with the pain at night. One thing I've tried, and sort-of works, is the pain meds for sure, but also, my husband will rub where the edema is around the ankle with Bio-Oil and it always feels better after that. Raising my feet up so that the swelling drains helps too, as well as cold compresses and warm baths eith epsom salts. The pain keeps me from walkiing, doing any kind of work on my feet (unless I take pain meds first) and, of course, also keeps me from sleeping well. They are supposed to be self-limiting, but I don't see that in my case. They get worse, better, worse again, more pop up, the area swells and makes it painful to even just rotate my ankle... it can be very frustrating, especially if you can't find the cause. I understand where you're coming from, and hope we can help each other cope! > > Hi everyone, > > I have just joined the group. Need some advice on several things but a bit of background fiurst! - It was about 6 weeks ago I first noticed a couple of bumps on the back of my calves that looked like insect bites. > > Over the next few weeks there became more and more of them. I went to the doc and because I have a cat she said it looked like I had had a reaction to flea bites. > > I wasn't convinced so I googled the sypmtoms and came to the conclusion I had EN. I went back to see another doctor and he confirmed this. We don't know the cause. About a week after I first got the lumps I had a sore throat which lasted 4 or 5 days but that's gone now. The doc said it can be caused by a sterp virus? He didn't do any tests, just said take ibuprofen and it should subside on it's own over time. > > However I am wondering whether it is a drug reaction. I was on Minocycline for 4 months for Acne cea, it was working fine but I was worried about continuing on antibiotics for so long so I was put on Oxytetrcycline as apparently it was safer long term. Well within a few days of being on this my face broke out in tons of little pimples under my skin so I stopped them immediately. Then about a week later I got EN symptoms. Could it be a delayed reaction? > > 6 weeks on they show no sign of going. I have the lumps on both calves, last week they broke out on the side of my thighs and a couple on each forearm. I have a very painful area on one knee, both ankles are swollen and one foot! > > One last thing - does alcohol make symtoms worse? Symtpoms seemd to go down on Thursday and I was thinking great maybe it's on it's way out. However I was last night and had several drinks and this morning, well, it was worse than ever! My skin all over both calves was very red and tight and shiny looking, one lump appears to have dry scab type skin on it and I could barely walk :-( > > Anyway sorry to have waffled for ages. I had never heard of this weird condition until I got it. The body is an odd thing! I am scared it will never go away! Summer is coming and the thought of hiding my legs under trousers all summer is depressing. They look so ugle and I'm sick of the pain! > > Caroline xx >