question

[Guest guest]

YES, and they are very toxic and dangerous to your joints. I'm only 43 and due to IV steroids, they want to replace one of my hips. It also has caused havoc in other friends who have had to have iv steroid infusions......not to mention ball players like Bo......gosh, what's his last name. He had 3 courses of iv steroids and had to have both hips replaced, one knee and a shoulder.

ni

Atlanta

Alpha one antitrypsin deficiency with associated severe Panniculitis.

04/07

Has anyone here used monthly iv steroid infusions? Since oral steroids and plaquenil are not doing enough to keep EN at bay, my doctor is talking about using this treatment. They are sending me to an infectious disease doctor for his opinion on this as well. I just wonder about the side effects as compared to oral treatment.Thanks!

[Guest guest]

Hello...I am new to the group and have a question.

First...a little history.

My first case of EN was in October 2009, though it was not diagnosed as such

until January of 2010. I started getting small, but painful red marks on my legs

and arms. I was receiving IV iron treatments at the time and was told to take

Benadryl because it was probably an allergic reaction to the Venofer (iron).

After the second treatment I was in so much body pain that I could not get out

of bed. At the time, I did not know what was happening to me. I stopped the iron

after the third treatment. The pain and red marks did not go away. No doctor was

able to tell me what was going on. I diagnosed myself (thank you internet) and

it was confirmed by a Dr. in January of 2010.

Fast forward...no course of treatment has helped...prednisone, iodine, diet,

etc. I do not seem to struggle as much with the red marks/nodules...they are

painful when I have them...most recently brought on by a tooth infection, but

the worst part of it is the body pain that lingers.

I have been in pain now for 2 years. The first year was the worst...all my

joints seemed to swell and hurt. This past year I had what I guess is a

remission. I had to have back surgery and it turned out to be a blessing in

disguise. The day after the surgery all my body pain from the EN was gone. I was

recouperating from my surgery when I had a tooth infection. It brought on the

red marks again and the cycle began again. I have been in body pain since the

beginning of August now.

So, my question is this...my doctor says that the horrific joint pain is not

Erythema Nodosum. EN and joint pain is only EN if I have the red marks and

nodules. I keep telling him that the horrific body pain ALWAYS starts exactly 5

days after the red marks appear...the red marks gradually go away, but the

horrific pain remains.

Is the joint pain EN?

I have had tons of blood tests done...all are negative for any kind of

arthritis, auto immune diseases, etc. Doctors cannot explain the pain or give me

any kind of medicine to stop the pain. I am currently taking 150mg of extended

release morphine 2X a day and 4mg of immediate release morphine for break though

pain. I am also on Neurontin and Skelaxin for my back. Prior to the EN I led an

active, fulfilling life. I was into all natural/organic/whole food nutrition.

Currently, I struggle to get out of bed. I am unemployed, waiting for

disability. However, I do live a joy filled life.

Thanks!

Lilian