dermatomyositis panniculitis

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Permalink Reply by Robert on April 23, 2011 at 1:58pm

Does he have a rash?

Rob

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Permalink Reply by maggie wright on April 23, 2011 at 3:07pm

his rash started about 3 1/2 years ago. he was prescribed 60 mg of predniose but his doctor was not very wise or knew nothing of this disease. the rash went away after about 2 months on steriods. he kept him on the steroids for 3 years which effected both of his hips requring full hip replacement surgery for both hips. in the last 6 or so months his face started swelling in the cheek and nose area with hard lumps under the skin. about 3 months ago received IVg infusion and now his eyes are swollen shut. dermatologist from jefferson university did a biopsy and said he had the dermatomyositis panniculitis says this is extermly rare form of dermatomyositis. last 3 days have been back and forth to er seeking some kind of help. the fluid is leaking out and eyelid now has a very big liason on it. he was prescribed antibiotics and has another IVg treatment set up for monday. we are just looking for some help.

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Permalink Reply by Robert on April 24, 2011 at 8:37am

maggie wright said:

his rash started about 3 1/2 years ago. he was prescribed 60 mg of predniose but his doctor was not very wise or knew nothing of this disease. the rash went away after about 2 months on steriods. he kept him on the steroids for 3 years which effected both of his hips requring full hip replacement surgery for both hips. in the last 6 or so months his face started swelling in the cheek and nose area with hard lumps under the skin. about 3 months ago received IVg infusion and now his eyes are swollen shut. dermatologist from jefferson university did a biopsy and said he had the dermatomyositis panniculitis says this is extermly rare form of dermatomyositis. last 3 days have been back and forth to er seeking some kind of help. the fluid is leaking out and eyelid now has a very big liason on it. he was prescribed antibiotics and has another IVg treatment set up for monday. we are just looking for some help.

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Permalink Reply by Robert on April 24, 2011 at 8:51am

He should try moist hot towels over his eyes. I had the same problem and it worked for me.

My doctor gave me a pill called plaquinel for the rash. It worked. He also gave me cream and it helped.

The bumps could be calcium deposits. I get those all over. I have also tried placing cold on the deposits.

The IVg helped with the calcium situation. I found that the IVg and losing weight and working out helped.

I have been off the IV for 3 years nows. I try and eat right and keep my weight down.  I found that the IV was

my best treatment. There is also a numbing cream to put on your arm at the injection site. It is called emla.

I try and look online everyday for different treatments that I can do on my own. I used to take Noni Juice

which I purchased at a health food store and other items. All the doctors can do is give you drugs. The also

have studies going on using a drug called Rituxin. You can check that online. My email is dad2twins@aol.com

if you have any other questions.

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Permalink Reply by maggie wright on April 24, 2011 at 9:07am

he is on the plaquinel for 2 months now. the rash is gone it is just the sever swelling at the eyes. he is icing and using heat on and off all day. he goes tomorrow for 2nd IVg treatment, we're hoping doc will figure something out for his eyes.

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Permalink Reply by Robert on April 24, 2011 at 10:02am

Glad the rash is gone...,hopefully the swelling will go away.  When I first started IVg I was

getting it done in the hospital about a half hour from my home. I called my insurance company

and asked them if it would be cheaper if I had it it done at home. They agreed and a nurse used

to come to my house. It was so much better being at home and less stressful. I am not sure where

you have it done but it might work for you.

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Permalink Reply by maggie wright on April 24, 2011 at 10:34am

the hospital is only 15 min from our house so its not a big deal. his doctor just called us told him to take some lasik. if swelling isn't down by tomorrow after IVg he will be admitted to hospital for an eye specialist to see him.

 

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Permalink Reply by Robert on April 24, 2011 at 3:08pm

maggie wright said:

the hospital is only 15 min from our house so its not a big deal. his doctor just called us told him to take some lasik. if swelling isn't down by tomorrow after IVg he will be admitted to hospital for an eye specialist to see him.

 

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