Re: Lofgren's Syndrome

[Guest guest]

Hi ,

From what I have read Lofgren's Syndrome is Sarcoidosis, and there is much more written about that than Lofgren's. For many years, my immunologists have been suspecting Sarcoidosis with me, saying I have a typical set of sarcoid lungs, however, they discount it due one thing or another. One thing they have said though, is that sometime in the future they will end up with a diagnosis as to the root of the cause of my EN. I do have an auto immune disorder, but as yet is undiagnosed. Quite frankly the only drug to day (after 13 years) to bring me under control is prednisone, as bad as it is, it does relieve my worst symptoms and I just have to accept the side effects. Others are lucky enough to have the non steroidal anti inflammatories, but unfortunately, I can't. It might be work you reading up on Sarcoidosis...it is a self limiting disease, so there is a lot of hope there, remissions are more frequent than ongoing episodes. I hope this helps.

Regards

Trudi (in Australia - EN 13 years with numerous and obvious auto immune problems)

Lofgren's Syndrome

Hi, I haven't been on here for a long time. Has anyone been tested for Lofgren's syndrome. I think this is what I have. I originally thought it was a b12 deficiency causing the EN but it came back again and again. I had just about given up when I started searching the web for my symptoms. I have terrible pains in my feet and I've thought it was plantar fasciitis, I have had breathing problems for over 15 years and a low grade fever often. I have had fatigue my entire life. Just going shopping could wear me out. I have an appointment with a pulmonologist. There really is no cure but I think I can learn to manage the inflammation in my body and prevent it. I just don't want to take Prednisone.

[Guest guest]

I have been diagnosed with Loefgren's Syndrome, but there was no test. I guess since all my other tests were negative that's what the Autoimmune Disease Specialist concluded. I had my first outbreak in May 2008 which went away after a couple of months. I only took pain killers nothing else. Then after being symptom free for some time it all started again in November 2008. The swelling was so bad that it was hard to bend my knees. Luckily it all went away, and the following CT scans should that my lymph nodes had shrunk to normal size. The doctor couldn't find any other underlying cause, so we went with Loefgren's Syndrome which fit everything. As far as I understand it it's supposed to be a one time outbreak and shouldn't return all the time. I have been symptom free for nearly 2 years. Good luck to you!Subject: Lofgren's SyndromeTo: erythema_nodosum_Group Date: Friday, October 8, 2010, 12:18 AM

Hi, I haven't been on here for a long time. Has anyone been tested for Lofgren's syndrome. I think this is what I have. I originally thought it was a b12 deficiency causing the EN but it came back again and again.

I had just about given up when I started searching the web for my symptoms. I have terrible pains in my feet and I've thought it was plantar fasciitis, I have had breathing problems for over 15 years and a low grade fever often. I have had fatigue my entire life. Just going shopping could wear me out.

I have an appointment with a pulmonologist. There really is no cure but I think I can learn to manage the inflammation in my body and prevent it. I just don't want to take Prednisone.

[Guest guest]

Hi Anika,Good to hear from you! Yes, it is my understanding that Lofgren's is a one time illness and should not return. The unusual thing about Lofgren's is that it usually presents with EN--and that is a Good thing, because it signals that is is the milder Lofgren's and not the more serious Sarcoidosis [which can last a lifetime and rarely gets totally better even with treatment]. Lofgren's can take up to 3 years to go away entirely. I'm glad you are doing so well!Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Subject: Lofgren's SyndromeTo: erythema_nodosum_Group Date: Friday, October 8, 2010, 12:18 AM

Hi, I haven't been on here for a long time. Has anyone been tested for Lofgren's syndrome. I think this is what I have. I originally thought it was a b12 deficiency causing the EN but it came back again and again.

I had just about given up when I started searching the web for my symptoms. I have terrible pains in my feet and I've thought it was plantar fasciitis, I have had breathing problems for over 15 years and a low grade fever often. I have had fatigue my entire life. Just going shopping could wear me out.

I have an appointment with a pulmonologist. There really is no cure but I think I can learn to manage the inflammation in my body and prevent it. I just don't want to take Prednisone.

[Guest guest]

Thank you for your replies. I seem to have all the symptoms but I have had some

of these for years. The EN for about 7 years. I am hoping I am one of the rare

few that have Lofgren's and nota worse form of Sarcoidosis. Very scared as to

what it can do to my lungs. I've joined an online group for Sarcoidosis. I've

been crying off and on all day because I can relate to everyone's stories. The

extreme fatigue, the shooting pains in the legs, the shortness of breath and the

EN. I am trying to change my insurance next week so I don't have a $1,000

co-pay before I go to a pulmonologist. I'll keep you updated.

>

> Hi, I haven't been on here for a long time. Has anyone been tested for

Lofgren's syndrome. I think this is what I have. I originally thought it was a

b12 deficiency causing the EN but it came back again and again.

>

> I had just about given up when I started searching the web for my symptoms. I

have terrible pains in my feet and I've thought it was plantar fasciitis, I have

had breathing problems for over 15 years and a low grade fever often. I have

had fatigue my entire life. Just going shopping could wear me out.

>

> I have an appointment with a pulmonologist. There really is no cure but I

think I can learn to manage the inflammation in my body and prevent it. I just

don't want to take Prednisone.

>

[Guest guest]

Hi ,

My EN is present at this time I went to my family doctor she sent me to a

dermatologist he did a biopsy and only found EN. I also had a chest exray and

spine exray and they couldn't find anything. I also have had sore feet since

June very painful heels and arch I can only wear certain shoes and braces at

night to keep my feet from being flat at night. I thought this was Plantar

faciitis also. I am going to take potassium Iodide to try to get rid of EN have

you heard of this. I also have a very bloodshot left eye I think is related to

En. I am using steroid drops for this. I tried steroid shots for the En helped

for four days and the sores came back.I feel tired all the time no shortness of

breath yet. I just hope I can go in remission again I have not had En for 20

years since my last pregnancy but I went through menopause at 30 and am 51 now.

I have also gained a lot of weight always tired and hungry. Kim

> >

> > Hi, I haven't been on here for a long time. Has anyone been tested for

Lofgren's syndrome. I think this is what I have. I originally thought it was a

b12 deficiency causing the EN but it came back again and again.

> >

> > I had just about given up when I started searching the web for my symptoms.

I have terrible pains in my feet and I've thought it was plantar fasciitis, I

have had breathing problems for over 15 years and a low grade fever often. I

have had fatigue my entire life. Just going shopping could wear me out.

> >

> > I have an appointment with a pulmonologist. There really is no cure but I

think I can learn to manage the inflammation in my body and prevent it. I just

don't want to take Prednisone.

> >

>

[Guest guest]

Hi I have had en for 23 years I have had a flare up now since may I get pains in the bottom of my feet and also terrible pain in my ankles and also my calf muscles knees also my wrists and fingers, I am always tired but I do have a B12 deficiency and am also on folic acid for life I also have terrible headaches, my lumps dont always come up sometimes I get the pain without the lumps, and the area where the lumps come up is dented it seems that everytime the lumps come up a bit more of the tissue dissapears I wonder if anyone else has this problem. I have tried everything from anti inflamitories to steroids and nothing helps I find bed rest the best but this is not always possible when you have children. I hope you find a way of coping with your en all the best xxSubject: Re: Lofgren's SyndromeTo: erythema_nodosum_Group Date: Friday, 29 October, 2010, 17:16

Hi ,

My EN is present at this time I went to my family doctor she sent me to a dermatologist he did a biopsy and only found EN. I also had a chest exray and spine exray and they couldn't find anything. I also have had sore feet since June very painful heels and arch I can only wear certain shoes and braces at night to keep my feet from being flat at night. I thought this was Plantar faciitis also. I am going to take potassium Iodide to try to get rid of EN have you heard of this. I also have a very bloodshot left eye I think is related to En. I am using steroid drops for this. I tried steroid shots for the En helped for four days and the sores came back.I feel tired all the time no shortness of breath yet. I just hope I can go in remission again I have not had En for 20 years since my last pregnancy but I went through menopause at 30 and am 51 now. I have also gained a lot of weight always tired and hungry. Kim

> >

> > Hi, I haven't been on here for a long time. Has anyone been tested for Lofgren's syndrome. I think this is what I have. I originally thought it was a b12 deficiency causing the EN but it came back again and again.

> >

> > I had just about given up when I started searching the web for my symptoms. I have terrible pains in my feet and I've thought it was plantar fasciitis, I have had breathing problems for over 15 years and a low grade fever often. I have had fatigue my entire life. Just going shopping could wear me out.

> >

> > I have an appointment with a pulmonologist. There really is no cure but I think I can learn to manage the inflammation in my body and prevent it. I just don't want to take Prednisone.

> >

>

[Guest guest]

Hi ,Great to hear from you! Yes, EN can destroy the fat cells and that explains the "dent".I never really noticed a dented area after the lumps subsided, but I definitely have a thinner lower left "EN leg" than my normal right leg. Since I have been doing more walking my right leg looks much more muscular and healthy. The left leg walks just as far but stays skinny. Since I wear pants most of the time no one sees it, so I don't really care--as long as the pain is gone--which it finally is.Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Subject: Re: Re: Lofgren's SyndromeTo: erythema_nodosum_Group Date: Friday, October 29, 2010, 2:19 PM

Hi I have had en for 23 years I have had a flare up now since may I get pains in the bottom of my feet and also terrible pain in my ankles and also my calf muscles knees also my wrists and fingers, I am always tired but I do have a B12 deficiency and am also on folic acid for life I also have terrible headaches, my lumps dont always come up sometimes I get the pain without the lumps, and the area where the lumps come up is dented it seems that everytime the lumps come up a bit more of the tissue dissapears I wonder if anyone else has this problem. I have tried everything from anti inflamitories to steroids and nothing helps I find bed rest the best but this is not always possible when you have children. I hope you find a way of coping with your en all the best

xx