dermatomyositis - Myositis Message Board

mitchjar · 03-15-2007, 03:55 AM

this is my first time post. i am not a good speller or good with the computer but i do have dermatomyositis and a need to explain my self with people who understand what i am going through. it is hard for my family and evein the doctors to fully understand what we go through with dermatomyositis. i am a 47 year old male. in december 2006 it it started slowley and now i have a hard time walking because of my breathing, when i walk slow it feels like i am out of breath. i can not go up stairs and it is hurtfull to slowell. (eat or drink).my hands are very painfull to touch anything like keys, water, hands in pockets. i am on 10mg prednisone pills and 50mg methohexate iv 1 a week for the last 4 weeks. i do not feel any better,yet. it is also hard to talk because of my breath. the dermatomyositis has caused pulmonary fibrosis, i think the mussels around my lungs are like sun dryed with no eleatisy. i dont understand the lungs but i think the mussels around the lungs help mesage the lungs to breath easer. does any one understand how the lungs work with dermatomyositis when the inflamation efects the mussels around the lungs.??? i also have the skin problems. but all the problems are small compair to my breathing. doctors say i can only wate for meds to start working. any input will be very helpfull. also its good to here the long turm outcome of people with these problems. the doctors dont seam to know. all i know is if i can not breath good its hard to do anything. thanks for listing.(hearing)...mitch

tmjtrans · 03-18-2007, 10:36 PM

Sorry to hear you are having to go through this. I was diagnosed in August 2006 with a very rapid onset of horrible rash and muscle weakness which eventually included difficulty swallowing. Fortunately, I haven't experienced much trouble breathing. I do know that my rheumatologist started me on high doses of Prednisone (dose is somehow correlated to your weight is what he said). Most people I know of have started at 40-80 mg of Prednisone a day and then added the Methotrexate or Imuran to try to help in decreasing the Prednisone. You might see if that is a possibility. From what I understand from my rheumatologist is that Imuran helps in more severe cases.

It can get better! I believe you have to be your own medical advocate and if you don't feel your doctor is listening or you want a second opinion, you must seek another provider. We live a fairly small area and we have two rheumatologists without having to travel 180 miles to the nearest large city, so hopefully you have options as well. Just remember that it can and will get better once you find the right regimen or experience a miracle!

mitchjar · 03-20-2007, 07:39 PM

thanks. i just spent the last 4 days in hospital and now at home on full time oxgin. they incresed my prednisone to 20 mg they are going very slow because of my suger dibities. I feel i am in good hands with a few doctors checking each other. thanks for input. experience a miracle! will be best. god is with me.

issy07 · 03-26-2007, 09:08 PM

I am sorry to hear that you spent a few nights in the hospital. I have had dermatomyositis for about 5 years now. I am 29 years old and a mother of 2. It is quite frustrating, but in my experience the prednisone does help relieve the symptoms. Unfortunately, it takes a little while to work. At the time I have the rash and some weakness, but fortunately I am now able to hold my 1 year old daughter and drive my car again. There was a time when I relied on my husband and mother and siblings to help me do most all daily tasks. I even had to quit working, because my muscle weakness was so bad. I am still on prednisone and methotrexate, and my doc says we will decrease the prednisone in in two weeks. I do not feel strong enough to go back to work yet and my doctor does not urge me to try any time soon, but I am making progress. I will keep you in my thoughts and prayers and I too believe in miracles.

mitchjar · 03-27-2007, 08:52 PM

Quote:

Originally Posted by issy07

I am sorry to hear that you spent a few nights in the hospital. I have had dermatomyositis for about 5 years now. I am 29 years old and a mother of 2. It is quite frustrating, but in my experience the prednisone does help relieve the symptoms. Unfortunately, it takes a little while to work. At the time I have the rash and some weakness, but fortunately I am now able to hold my 1 year old daughter and drive my car again. There was a time when I relied on my husband and mother and siblings to help me do most all daily tasks. I even had to quit working, because my muscle weakness was so bad. I am still on prednisone and methotrexate, and my doc says we will decrease the prednisone in in two weeks. I do not feel strong enough to go back to work yet and my doctor does not urge me to try any time soon, but I am making progress. I will keep you in my thoughts and prayers and I too believe in miracles.