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Old 03-17-2008, 10:14 AM   #1
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Dermatomyositis??? Need some direction..

I developed the classic violet dermatomyositis rash on my hands about 4 months ago. I also have the 'shawl' rash on my upper chest and upper back. One dermatologist took a surface biopsy which came back as possible lupus. Corticosteroids got rid of the rash on my back. It flared up a second time and only prednisone got rid of it. I was away in Florida and had a bad flareup. Went to another dermatologist who to punch biopsies of my back and hand. Back biposy stated 'possible connective tissue disease' and the finger biopsy came back 'consistent with dermatomyositis'. I was sent for a full blood workup and the only thing that came back out of range was serum myoglobin at 62 mcg/L. From what I see on the internet that is not really out of range either. Back in NY my GP is now sending me to an allergist. As I said my hands show absolutely classic dermatomyositis symptoms. I have no pain, no swelling, no muscle issues, no itching on hand, slight itching on back. The Florida dermatologist wanted me to go for muscle biopsey which my GP thought was a little opver the top. From what I have read the association of dermatomyositis with a higher rate of malignancies scares the heck out of me. I think I will have the cancer screening done for peace of mind.....but I would like any comments you have to offer on an approach to handling all of this. Thanks.

 
Old 03-17-2008, 10:45 AM   #2
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Re: Dermatomyositis??? Need some direction..

hankster,

I was diagnosed through a deep muscle biopsy last year. All my other testing was negative. What I was told is that a positive muscle biopsy is a definitive answer for the disease.
There is a possibilty that you are early stages in the disease? I believe Ive read that some people dont develope muscle symptoms with dermatomyositis, and only have the skin symptoms.
There can be a cancer link to myositis, and your Doctors should be aware of that connection. NOT everyone does get cancer. I did just have a cancer scare myself, and had part of my lung removed being told it was lung cancer. I went through all the PET scans, CT scans, biopsies, and the PET scan showed "hypermedobolic uptake" which can indicate cancer, the CT scan showed a "spiculated" shaped mass, which can indicate cancer, as well as where it was and the fact I have myositis. Long story short, surgery was done, and it turned out to be a rare type of infection that presented just like cancer.(by the GRACE OF GOD) This disease can make us more suseptable to some things, and being that it is believed to be "auto immune" in nature, can open the door to certian things. Our immune systems are weakened with this, and as I said Doctors NEED to be aware of that fact. But it also dosent mean these terrible things WILL happen, just need to be aware of the fact it can.
Early treatment of the myositis wether it be dermamyositis, polymyositis or IBM, can possibly through it into a remision. So early intervention seems to give some the best possible out come.
I wish you the best, take care, and GOd bless,
Annette

 
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Old 03-18-2008, 08:04 PM   #3
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Re: Dermatomyositis??? Need some direction..

Hankster, my husband was diagnosed with dermatomyositis after a muscle biopsy which was important for a definitive diagnosis. He started having many of the signs and symptoms of DM but they were thought to be side effects of his chemo therapy. Yes he had cancer and we found out that dermatomyositis is usually associated with cancer in older adults, he was 58 at the time. He has the classic rash on his hands still today, but we are glad to say he is doing much better with all the other symptoms. He went full force with this disease, he could not lift his arms or legs, he couldn't lift his head and eventually his throat stopped working and he had a feeding tube put in. He finally hit the end of the road when his lungs filled with blood clots and was put on life support. That was over a year ago and today with continued care he is up and going and the feeding tube has been removed and he has very little sign of the rash on his shoulders and back. To be sure he is also cancer free. From what we have learned he will always be on some tough medications. I think he had the DM before his cancer was discovered but the suppression of his immune system with the chemo made it run rampant.

I would recommend a cancer screening just to be safe.

Glojer

 
Old 03-19-2008, 05:51 AM   #4
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Re: Dermatomyositis??? Need some direction..

Thanks for the responses....just to be safe I had an EKG yesterday and will have the full CT regimen for cancer screening on Friday. As I said, I have no symptoms other than the rash. My doctor thinks I am overdoing it, but my kids tell me to get it done to be on the safe side. Just as a question....did any of the hand rashes itch? Mine doesn't at all.....at what point should I feel comfortable that I am out of the woods?...it's been 4 months and zero symptoms. Thanks.

Last edited by hankster1949; 03-19-2008 at 05:52 AM.

 
Old 03-19-2008, 02:14 PM   #5
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Re: Dermatomyositis??? Need some direction..

i was diagnosed with DM when i was about ten years old... I got so weak i had to sit out in gym class and couldnt even manage to get myself up off the floor... I took steriods, fosamax, calcium pills, and all kinds of other stuff... Im 22 years old now and i have a ten month old little girl.. i dont remeber what test"s they ran or anything... so now im trying to gather all my medical records to find out if its possible that my child might get this one day... Ive been in remission since i was around thirteen.. no meds and no problems... but i remember they told me it could come back one day? Does anyone know anybody that got taken off their meds and then had a relapse? im so scared that one day ill have to re live this... HELP

 
Old 03-20-2008, 08:54 PM   #6
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Re: Dermatomyositis??? Need some direction..

Yes, hankster my husbands hand rash and all the other rashes itched. As a matter of fact although he doesn't have rashes all over his body his skin has become so thin and sensitive from the medication that he itches all over. With regular topical treatment, that has been getting better. The way we know he is out of the woods and staying that way, is of course he has regained a great deal of strength back, but also his blood work, mainly the CK level, is in a great range.

Glojer

 
Old 07-14-2008, 12:46 AM   #7
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Re: Dermatomyositis??? Need some direction..

Hi Ashley,

I was diagnosed with DM at the age of 23 I am 31 now. I have 3 kids ( 1 before diagnosed the other 2 after). I had gone through it all ...itchy skin rash all over, muscle weakness, couldn't swallow well..was hell. I took meds for 1 year methotrexate and prednisone and then POOF never had a flare again not even after having babies. My mom has type I diabetes since she was 20 (which is auto immune as well). My 5 year old is Autistic but don't know if it's associated with the Dermato or meds. I had him 4 years after the bout of Dermato.

Be glad to answer any questions...Dermato can be scary. I had the CDC fly down to see me because it was so "rare" they told me I could be a case study..gald its over!!!

 
Old 08-07-2008, 04:38 PM   #8
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Re: Dermatomyositis??? Need some direction..

Quote:
Originally Posted by Momof2sons View Post
hankster,

I was diagnosed through a deep muscle biopsy last year. All my other testing was negative. What I was told is that a positive muscle biopsy is a definitive answer for the disease.
There is a possibilty that you are early stages in the disease? I believe Ive read that some people dont develope muscle symptoms with dermatomyositis, and only have the skin symptoms.
There can be a cancer link to myositis, and your Doctors should be aware of that connection. NOT everyone does get cancer. I did just have a cancer scare myself, and had part of my lung removed being told it was lung cancer. I went through all the PET scans, CT scans, biopsies, and the PET scan showed "hypermedobolic uptake" which can indicate cancer, the CT scan showed a "spiculated" shaped mass, which can indicate cancer, as well as where it was and the fact I have myositis. Long story short, surgery was done, and it turned out to be a rare type of infection that presented just like cancer.(by the GRACE OF GOD) This disease can make us more suseptable to some things, and being that it is believed to be "auto immune" in nature, can open the door to certian things. Our immune systems are weakened with this, and as I said Doctors NEED to be aware of that fact. But it also dosent mean these terrible things WILL happen, just need to be aware of the fact it can.
Early treatment of the myositis wether it be dermamyositis, polymyositis or IBM, can possibly through it into a remision. So early intervention seems to give some the best possible out come.
I wish you the best, take care, and GOd bless,
Annette
Can you explain what type of rare infection you had and what treatment was given? It is believed by many that dermaomyositis is caused by a viral infection.

Last edited by Belvia1; 08-07-2008 at 04:47 PM.

 
Old 08-07-2008, 04:45 PM   #9
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Re: Dermatomyositis??? Need some direction..

Please post what medicines you were given as many believe this disease to be connected to a viral infection. I would like to know what difference in medications I have been taking.

 
Old 08-23-2008, 06:34 PM   #10
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Re: Dermatomyositis??? Need some direction..

My sister was diagnosed with dermatomyositis this July. She is now on a feeding tube as her throat has been affected. I am interested in knowing if anyone has had dermatomyositis and been on a feeding tube and how long it took for the swallowing issues to resolve. She is very hopeless and feels she will never get well again. She did have severe muscle weakness for the month of July and is getting Prednisone, Methotrexate, and I.V. Immunoglobulin treatments for them. Some muscle strength has returned, but she still has trouble getting up and down, however, she does walk okay. Any optimism you can share would be greatly appreciated. Thanks!!

 
Old 01-30-2009, 05:42 PM   #11
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Re: Dermatomyositis??? Need some direction..

Quote:
Originally Posted by yardbirdgirl View Post
My sister was diagnosed with dermatomyositis this July. She is now on a feeding tube as her throat has been affected. I am interested in knowing if anyone has had dermatomyositis and been on a feeding tube and how long it took for the swallowing issues to resolve. She is very hopeless and feels she will never get well again. She did have severe muscle weakness for the month of July and is getting Prednisone, Methotrexate, and I.V. Immunoglobulin treatments for them. Some muscle strength has returned, but she still has trouble getting up and down, however, she does walk okay. Any optimism you can share would be greatly appreciated. Thanks!!
I was Diagnose with dermatomyositis in july 08 my weakness, Fatigue became very severe to the point where could not lift arms, legs and eventually could not hold my head up and finally my troat very weak i can not eat or swallow with out help, rach in all my body and face and fingers
I use methotrexate, Prednisone and (IV) Rituximab this last medice really help me with my troat and wekness and doing very well

Last edited by pedro143; 01-30-2009 at 05:46 PM.

 
Old 01-31-2009, 07:17 PM   #12
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Re: Dermatomyositis??? Need some direction..

Hey Pedro,
Thanks for your reply. The info on the Rituximab was most helpful. So far, my sister is only getting Methotrexate and I.V.I.G. Her weakness is not as bad, but the skin is just terribly red all over the body. She no longer has the feeding tube in, thankfully. It will be good news for her to hear that there is yet another drug possibility and that someone has had a positive experience using the Rituximab. I'll pray for you that the disease leaves your body and never returns! God bless, Yardbirdgirl

 
Old 02-01-2009, 01:14 PM   #13
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Re: Dermatomyositis??? Need some direction..

Quote:
Originally Posted by yardbirdgirl View Post
My sister was diagnosed with dermatomyositis this July. She is now on a feeding tube as her throat has been affected. I am interested in knowing if anyone has had dermatomyositis and been on a feeding tube and how long it took for the swallowing issues to resolve. She is very hopeless and feels she will never get well again. She did have severe muscle weakness for the month of July and is getting Prednisone, Methotrexate, and I.V. Immunoglobulin treatments for them. Some muscle strength has returned, but she still has trouble getting up and down, however, she does walk okay. Any optimism you can share would be greatly appreciated. Thanks!!

 
Old 02-01-2009, 01:19 PM   #14
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Re: Dermatomyositis??? Need some direction..

Quote:
Originally Posted by yardbirdgirl View Post
Hey Pedro,
Thanks for your reply. The info on the Rituximab was most helpful. So far, my sister is only getting Methotrexate and I.V.I.G. Her weakness is not as bad, but the skin is just terribly red all over the body. She no longer has the feeding tube in, thankfully. It will be good news for her to hear that there is yet another drug possibility and that someone has had a positive experience using the Rituximab. I'll pray for you that the disease leaves your body and never returns! God bless, Yardbirdgirl
I use medice for rahs is very good take all that red and rahs out The name is TETRADERM
is very hepl with my skin and all that in all my body in two weeks is clear really is hepl
TETRADERM is betametasona-clotrimazol- gentamicina all in cream

 
Old 02-02-2009, 10:43 AM   #15
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Re: Dermatomyositis??? Need some direction..

Hey Pedro,
Thanks for the name of the medicine you take for the rash. I have never heard of it, but will forward the information to my sister and perhaps she can get her doctor to prescribe it. I also gave her the information about the Rituximab and she was very pleased to learn of yet another possibility as far as medicine is concerned. You have been a great help and I truly appreciate your responses to my emails. God bless you, Yardbirdgirl

 
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