Hi guys... I'm ria from Philippines. I'm so glad to have found this site. My mom has Dermatomyositis and she is currently in the hospital. her DM has already progressed to a bad state. She could no longer stand, walk, move her arms, sit or even swallow. She now has pneumonia due to aspiration of food to her lungs becasue of her swallowing problems. Her doctor has prescribed her Immunoglobulin. I wonder if any of you already has experience having treated with the drug. Seems that my mom does not respond to high dose steroids and cytotoxic drugs anymore. We had a really bad fright last dunday as her blood pressure went down and her Oxgen concentration were very bad.. we thought we were going to lose her last sunday. We are very hopeful with the immunoglobulin whould make her better...the drug is so expensive her in the philippines that we are going to financial crisis because of it. She needs to be treated for 5 concecutive days. I hope I can hear some positive feedback from any of you guys having treated with the same drug. We are so depressed in the family and we are really hoping she would get better soon.

hello Ria. i'm very sorry but i really don't know what to suggest as far as drugs go. i actually refused to take Plaquenil because i was afraid of the side-effects. Could i just go off on a lateral vein and express my frustration that we don't know the causes of this thing, and the reasons why sometimes the symptoms abate seemingly of their own accord. i just mention it because that is what happened in my case. i reached a certain plateau and aside from the swallowing problem, i don't seem to have gotten much worse for a while. and i keep casting my mind back to the early days and two points; 1. they thought i got DM because of stress 2. one doc had me tested for allergies i just can't help feeling that there is some enviromnmental component to all this, that there is SOMETHING we are living with or eating or going through that is causing or aggravating the symptoms. well i found that i was allergic to egg white and dust mites, and i tried to eliminate both. i've also made sure there are no pesticides around my house, like fly spray, and no weed-killers. and i try not to eat food with a lot of preservatives or other artificial additives. and a relationship that was making me feel so desperate i occasionally felt suicidal finally cracked apart. and my symptoms have not progressed so far as your mum's even after 9 years. i guess i am probably at least her age. perhaps some changes in life style may be of help... a move to the remote, quiet countryside for a while maybe....i know it seems like a very long shot, and i wish i could suggest more! i wish you all the very best

Hi Ria, I was dx'ed with dm last year after many years of health problems, last year the problems got a lot worse. I have been on prednisone and methotrexate. I am starting to finally get better. I have never had the immunoglobulin treatment but have heard very good things about it. You can also check out another website for DM. It is myositissupportgroup.org. I'm pretty sure that's the correct address. There are a lot of people who have had the IVIG on that website and share their experiences with this situation. I pray your mother gets well, and you are holding up as well.

Hi guys.. thanks for thr reply. Its really fustrating because DM is such a rare disease and even doctors are not familiar with it. She was initially diagnosed with allergies and had allergy patch test done. And few months she was on antihistamine and steroids. By the time she has gotten worst the doctor was already looking into DM. But it was to late already she cannot move anymore. She is on her 3rd day of Immunoglobulin she seems responding to it. Last sunday we almost lost her but now we are able to talk to her. But she's still in the hospital and she is tube feeding (NGT). Well I do hope she's going to get better. I really appreciate knowing you guys it gives me hope that my mom will get better. I do hope both of you will have worry free days. I hope you could update me in case you find some miracle drug in your country or any suggestions to make my mom feel comfortable.

Hi Ria, I am on Immunogobulin, I have been on it for 3 years. I have a infusion nurse come to my house every 3 weeks, it takes 2 days to infuse. It has really helped me. My insurance covers the cost. I highly recommend it. Good luck to you and your mom. Kim