Oh my goodness! i'm so sorry it's taken me this long to get back to this!
so....my story is basically, I was diagnosed with polymyositis after bloodwork and a muscle biopsy. I have Jo-1 Polymyositis...had ck levels about 1000 when I started my prednisone treatment. I took 20mg AM and 20mg PM and tapered from that 40mg for 3 1/2 months. My levels went down to the 90's almost immediately, and stayed there throughout the taper. I was 39 years old.
From what I have been told by the doctors and from all the info I have read up on, you can definitely have a successful pregnancy with myositis. You want it to be under control and in remission when you get pregnant, and keep it under control throughout the pregnancy. My doctors advised me to be under control for at least 3 months before I got pregnant. Prednisone is really your only option for treatment if you want to get pregnant. Methotrexate is a BIG NO…this is what they use to induce abortions actually. Immuran, has been used in some cases, and with other woman with other conditions, though there are still some pretty big risks. Prednisone is all in all, pretty safe for the fetus.
In my case, they wanted me to remain on prednisone for the entire pregnancy....to help prevent flares, since if you were to flare during the pregnancy, this could lead to loss of the baby. I was on 12.5mg 1x day throughout my pregnancy. You don't want to be tapering during your pregnancy, as tapering can cause a flare in some instances.....when you get to a level that is too low. I was tested 1 x month for my sed rate and ck levels. (the original post on this forum was a test that I had that the lab made a mistake! my levels did not go up! phew!) I also took a baby aspirin 1x day.
There won't be many doctor with experience with polymyositis, and especially with polymyositis and pregnancy....since this isn't that common. If possible, I'd try to find a hospital with a good maternal fetal medicine department, with even a level III NICU.......and and OB that will work closely with them and your Rheumatologist. They will all need to work together.
Because of your condition and the prednisone use, they will monitor your baby closely......if they don't mention this - I would request that they start ultrasounds and dopplers toward the end of your 2nd trimester. They did this because of my prednisone use during the pregnancy to watch the growth of the baby. This is what saved my baby! I think it was 22 weeks for me, they started this. And at 26 weeks found what's called reverse diastolic flow. I ended up delivering early, at 31 weeks, but they were able to catch it and give me steroids to help the baby’s lung development. She was born at 3lbs 6oz…just early and tiny. All she needed to do was learn grow and learn how to eat.
I will say that one of the risks is a flare after pregnancy, and I did have one. I was breastfeeding, so I delayed upping my prednisone and kept it where it was…..which eventually brought my levels back up around 1000. I am currently back up on the prednisone and my levels are coming down, and I am feeling much better! (you forget what normal feels like!)
Once I have stabilized again, we are actually going to try for another baby. We are hoping we can do this by the end of the year/beginning of next. My doctors are talking about trying IVIG with me before this…we’ll see!
Let me know if you have any specific questions. I know how scared and confused I was when I started this journey! My biggest advice is to get it under control, don't rush it....and do so with the support of a good team of doctors and your chances for a successful pregnancy are very high. Stay healthy during the pregnancy – avoid the sun, get lots of rest, etc. ….the things that keep your myositis under control.
Where are you located? What are your doctors telling you?
Feel free to email me privately as well!
Good luck with everything! Stay positive and surround yourself with doctors that know what they are doing.