I have not , and was only recently told that my symptoms point towards Polymyositis. When they began describing meds they said 'the only thing that will be tricky is if you someday plan on pregnancy because you absolutely should not get pregnant while on these sort of drugs'. They also mentioned that if that is the case some day that we would really need to change it up and see what is possible. This is the extent of our conversation due to my husband and I assuring him that we plan to adopt rather than 'have' children.

That's all I can offer to this conversation. How long since you were diagnosed? Are you on meds maintaining your flare ups?

I'm with you ashmacpep my husband and I plan on adopting rather than having our own children. I've read lots of literature that says with most autoimmune conditions women will find their ai symptoms completely go away during pregnancy, but it is the opposite with DM (I didn't read specific to PM) most pregnant women with DM will find that their symptoms get worse. DM women are more likely to have either a still birth or miscarriage also. Not to say people can't have children with this disease, but I personally don't want to.

When I was 6 years old I had a friend who was adopted and treated really awful by her adoptive parents. I told my mom right then I would adopt as many babies as I could & be the best mom I possibly could be. This feeling has never changed. There are so many, many babies out there desperate for a mom and dad that will truly love them. I just feel for me personally this is something I'm called to do. I decided this before being sick, but being sick has confirmed these feelings.

I can't lie that even though DM isn't supposed to be hereditary I still would worry myself nonstop that "what if?" I mean they haven't studied this disease enough to know how to treat it so how do they know absolutely for sure?

The first question any of my doctors asked me is "are you done having children". It's not realistic for me to think I can come off of my meds...but, I have mctd...so, it may be a little different. Pregnancy can make the process flare...and if you're off of meds or restricted in the meds you can take, the flare can cause organ damage to you and the baby.

That's all I really feel comfortable sharing.

N

I have dermatomyositis and i currently only have the skin problems associated with it and have to been to many specialists including a perinatologist and he has given me the green light to go ahead and try for our 2nd child. My disease did not present itself until after i had my first baby in 2008, so i had a completely normal 1st pregnancy. I have come off of the plaquenil and he said that we can try after 30 days of being medicine free. He told me if i needed to go back on the meds, he would want to wait until i am in my 2nd trimester to do so. He told me that when you are pregnant, your body produces natural steroids and sometimes can make the symptoms improve.

I have read up alot on this myself and have found that as long as your disease is not active, then you have a better chance of having a normal pregnancy. the studies that they have done do show that if your disease is active, there is a greater risk of having a still born pretty late into the pregnancy. It really depends on the severity of your disease. My husband and i plan to start trying in March so i can keep you posted.

Thank you for posting this I constantly worry about the same thing. I have learned it is possible to have successful pregnancies after diagnosis. I was writing back and forth via facebook with another woman diagnosed with DM. She has had 2 children after her diagnosis. She did wait 4 years before having children to regain her strength. They were both premature but healthy! Oddly though she said that she had placenta issues so they had to make sure and monitor that. I find this odd because my daughter was stillborn in December 09. They said the cause was a placenta problem. So I don't know if that is a common occurence with a DM/PM pregnancy or not.

My husband and I are wanting more children as soon as possible and have had many discussions with our dr.s about when to start and what drugs are safe. We were told pred and Imuran were ok. Meth and cellcept are not. I'm trying antibiotics because my next med option would cause me to go sterile. Watch out for that.

I've read some of the stats on this also. I spoke with an older rhuemy and he said over his 40 yrs of practicing, he's seen many healthy pregnancies on all of these drugs. He said some drugs are better than others, but you can have a healthy pregnancy on all of them.

I'm sharing this because so often we get all this bad news, and watch out, and don't do that. He's right. Although our lives are so different, we still deserve to live.