I had a body scan right away after being diagnosed(chest ct, abd & pelvic ct).Mammo,gyn Mri. I am followed sith a chest ct every 3 months because of lesions.

When I had the body scan they found that I had thyroid cancer and when they scanned my thyroid they found that I have a brain tumor. They said that neither has anything to do with the DM.

I am in the process of being screened for breast, uterine, cervical, ovarian, and skin cancer. They are not doing a full body scan on me, but my rheum insisted that we screen for all age/sex specific cancers.

Last August, I was tested for everything (iodine scan, scintigraphy, pulmunary functions, thyroid echography, cardiac echography, colonoscopy, PET scan, EMG, muscle biopsy, another biopsy for some anomaly they found near my spin/sacrum,daily blood testing, etc. They wanted to rule out the possibility of cancer which is often associated with PM and DM. Only the elevated CKs and the muscle biopsy proved to be troublesome.

My rheumatologist has never suggested anything like this either. I only have my monthly blood work which is also a requirement because I'm on Imuran. Is this something you all requested or something your doctor wanted done?

All the testing was required by the team of doctors (neurology-rheumatology- internal medicine - etc) at the hospital (it's University affiliated).

i am just feeling confused by all this... i mean most of you know what your exact lab work shows what your #s are and everything.
my rheumatologist has never included me in on any of that. i don't even know what a normal cpk level is let alone what mine is.
i go back for more lab work & to see him again here in a week and a half & i'm not sure what questions i should ask now. i'm just really glad i found this site.

Most specialists don't realize how important it is to give relevant information to their patients. They probably figure that it takes precious time and that patients would not understand the terms used. I think we, patients, have the right to know and understand. Knowledge is the best way to tame fears. So, don't be afraid to ask questions and If possible get printed results of your tests; these will give you time to investigate and know more, and if you have to consult with other specialists, you could show them copies of these results.

By the way, normal levels for CKs are between 22 and 198 U/l. Avoid strenuous exercise and excessive alcohol before taking the test as they will increase the CK levels. Last August, at the worst of my PM condition, CKs were in the 9000 range. After treatment, my last test said 67 which is quite normal.

thanks levek for all the good info. i thought i was asking the right questions, but i'll definitely be more prepared now. maybe here in a the next 14 days i'll have some of those anwers about what's going on w/me.
i'm like you the more knowledge i have the more i can relax.

I have pm and have had the body scan and several other test to check for cancer. @ Rina6 it is funny that you mention you have a brain tumor, I recently found out that I have a tumor on the back of my skull which is odd they told you it has nothing to do with the disease itself, b/c I'm finding that they do all these test to check for these things but they dont associate it with the disease this makes me want to research that a little further to see if they do indeed have something to do with it.

I asked my rheum about cancer screening and he said we would do that but he did not say when. However, I am going to Canada in July and if I have cancer, I don't want to know until after that.

He has never said word one to me about additional blood work since he put me on methotrexate and my next appointment with him will be two months after I started the methotrexate. I had to ask my PCP to check my aldolase levels after 1 1/2 months on prednisone and was not pleased to discover they were outside the normal range again. I guess now that I am on methotrexate I will have to ask him or my neurologist to do bloodwork on all the things you are supposed to have tested once you go on immunosuppresants. I suspect I need to look for another rheum but it is very frustrating having to go from doctor to doctor and submit to all that stuff again. Grrr.

@frizzietail
Do you take methotrexate orally or in subcutaneous injections?
The latter is best because it's only once a week and there is better absorption in the system and less chances of side-effects. You have to take folic acid as a supplement in the two days that follow the injection (methotrexate acts on folates and your body needs them).

@levek I take 10 mgs of methotrexate once a week in tablet form plus 1 mg of folic acid every day. My doctor did not offer me the other option. I took the methotrexate for the first time last Sunday and was feeling OK until today - more just a general feeling of malaise rather than anything else. I am not really happy with my doctor since he does not seem to be very interested in seeing me more often than every 3 months.

Unfortunately when you live in a small town and have to drive 1 1/2 hrs - 2 hrs to get to a specialist, it can kind of wear you down.

Thanks for the advice.

From all the feedback I read on different forums that deal with PM/DM and its treatment, every patient receives a different regimen. Though specialists agree on the methods used in the diagnosis, it seems impossible to get a constant protocol in the treatment.