Reading Forums of Others With Dermatomyocitis Hmmm...

So I wanted to offer some perspective about this disease and just autoimmune diseases in general. I really think a lot of the emotions going on in these comments are similar to the emotions going on in many other disease and in some degree to all diseases. As everyone knows, it is always helpful to look at people with the same illness for emotional support and treatment options. For instance, should I be on the traditional treatment? This is a good question. I just copied and pasted this from this site: http://www.dailystrength.org/

"Hi Everyone,
I've had dermatomyocitis for the past two and a half years. I was diagnosed at 19. I should have joined a site like this a long time ago, instead Ive really let things get to me and have been near suicidal at points, which scares me because I am only about 3 years in and do not know how I am going to make it the rest of my life if I can not handle 3 years. I am not super depressed or anything right now. I'm actually feeling good, I do get super depressed when I am on Methotrexate. Does this happen to anyone else? It literally makes me crazy. I was on the shot but couldn't do it anymore. It made me sick, and I couldn't even look at the color yellow with out wanting to vomit. Just talking about chemo makes me sick to my stomach. I am "on" the pill form now. I put that in air quotes because I do not take it like I should. Im supposed to take it weekly. But havent for months, which is why I haven't been depressed. I hate lying about my medicine to my mom and doctor, but the stuff makes me incredibly depressed. I do not want to be near suicide again, and when I'm off it im fine. When I do take it, I have a nervous breakdown and cry hysterically, and am then sick for at least 3 days afterword. I can not eat or do anything but feel sick to my stomach and start brooding over life, which makes me feel worse because I know there are people who are a lot more sick than me. Does anyone take another medicine besides Methotrexate? My body is going to fall apart if I do not start taking it again, yet my problem with Methotrexate is so bad that I'd almost rather be paralyzed from this than take it. I've always had a really sensitive stomach (I can't swing on a playground swing) lol. Any help would be very much appreciated. Thanks for listening to my long ramble."

So I am randomly interjecting here inbetween these forum comments. :p Now obviously this girl above is struggling. She does not want to take her medicine because of the side effects on her mood. Obviously she cannot live a lifetime feeling suicidal on these drugs...the comment below seems like a natural next step to her difficulties...

"I would tell your doctor that the meds make you sick and maybe they can give you a combination of things or something that is easier on your stomach. I tried to not take meds for Dermatomyositis and it affected my lungs so, now i will take meds for the rest of my life. I take prednisone and imuran. I am sure they can come up with something that will help you. Good Luck! The side effects might wear off after being on the meds a few weeks. "


So perhaps if the combination of the drugs are changed she can have the positive effects of the drugs with less of the side effects? This is a possibility. The most important aspect of this comment is the warning it gives. Autoimmune disease can affect the lungs! Not being on the drugs puts one at a risk of this happening to them. Of course being on the drugs there is still as risk of this happening as well. If the proper alternative treatment is being undergone perhaps all of this can be avoided. How does one know if they are on the proper alternative treatment? These are all good questions. For me I have been feeling better, so I know something positive is happening in my body. My ANA is still quite high though despite all of my other improvements. Of course there is always the chance that I am making the wrong decision. I always say, if I was getting worse then I would know I was doing something completely wrong. So far I have not gotten worse that I can tell or that my lab tests tell.

"Hi,
I have lupus and APS and am on the injectible form of MTX right now (which isnt working well). I don't get side effects from it like you do, but I'm really scared to try another chemo drug if this one doesn't work. My advice to you is to speak to your dr. about switching to a new med because it is VERY important to take your meds and control your immune system. It will only get worse for you if you dont and you are so young....There are other meds out there that may not make you as sick and will help control your disease. When it gets out of control, like my disease's are, its much harder to control them. Imuran may be better for you. Plaquenil may even help (not sure if that is used for Poly). Im on 3 immuno suppressants and still sick (plaquenil, predsnisone and MTX). Not sure if I have Polymyositis but I have severe muscle issues right now. You really need to tell your dr. whats going on so they can try you on something else. They will try you on something until they find the right med for you. Also, they can prescribe you anti-nausea meds to take with any chemo type drug that can help with your stomach problems. Hang in there and please call your dr.
Hugs"

Another perspective and another experience. These autoimmune diseases are perdy scary folks! Goodness! DD:...

"TAKE CHARGE!! Tell your doctor no more! You are the one in the drivers seat. You are the one responsible for your medical care, not doctors, nurses, ect. I tried every "treatment" the doctor told me I should. ALL of them made me worse.

Not hear to preach or wave some weird naturalistic lifestyle in your face, but I stopped eating processed foods and started to eat healthy. Six months ago I was preparing to die, today, there may be hope.

I told my doctor no more drugs like chemo, or steroids or immune suppressants. He was fighting me all the way, until one day I could get out of the chair in his office by myself. He is on board now. We work together, and we talk things through together.

If your doctor does not listen to you, I say walk away. Go find a doctor that will listen to you, and take how these terrible drugs make you feel into consideration."

And then this comment. Hmmmm...Whenever the drugs seem to completely and utterly fail that is when I generally see people going more holistic. And she can get out of the chair now by herself when she is off the medications and eating better. Interesting.


IT'S A LOT TO THINK ABOUT! IT'S ALSO VERY INTERESTING TO SEE THE POWER OF DIET. IT'S ALSO SCARY TO SEE THE DISEASE AFFECTING SOMEONE'S LUNGS.


Holy smokes! It really is a lot to think about!