Polymyositis & Dermatomyositis Support Group

I started with the eyes, predisone helped it a bit, came back when I stopped and spread to other parts of e body. Muscles pain followed diagnosed with dm, 1 month later.

Hi Nichole. I hope your doctor is able to help you soon. I know how scary it is and all of us hate Prednisone but it seems like a necessary evil with myositis. Once you know what you are fighting, then you can start the work. Hang in there and know it will be okay.

Hi, Nichole, and welcome to this great community of people. While I'm sorry that you are "on the verge of being diagnosed with DM," I am glad you found this support site. We all understand your apprehension, but please be assured that it's better to know for sure. If your diagnosis is positive for DM, then you and your doctor(s) can begin looking for the proper medication combination that works best for you. And you will feel much better after the meds start working. Keep us posted on your progress. Best wishes!

Thank you for your kind words and I just got back from the EMG. The doctor said it's definitely a Myotosis, so the support and ability to share with you all will be so helpful.

fly2lv-sounds exactly how my diagnosis is going.

Thanks for accepting me on your board :)

Hi Nichole,
Welcome to the group, you will find some good support and information here. I have DM too, was diagnosed in July 2011, I am doing much better now but not out of the woods yet. I did prednsone in the beginning and it helped a lot, then started decreasing, just got off of it a month ago. I also take methotrexate injections and plaquenil which seem to be helping. I know you are probably overwhelmed, but knowing what your specific diagnosis is really helpful in terms of your treatment.
Welcome,
Maruska

Nichole, there are a number of different steroids in the category with Prednisone. Ask to try a different one. Medrol is my steroid of choice. Helps me with better mood and less anxiety. You may need to take some for a time to get that CK/CPK down to a reasonable level. CK measures the amount of breakdown of the muscle for some patients.
Sorry to have to welcome you to our group but you can find good support here, and lots of caring people. Ask away.
Shawna

Maruska,

Thanks for the welcome and sharing. I was wondering about Methotrexate, they seem to be helping, that's great! Do you have any bad side effects?

Shawna,

Good to know that there may be another option in the steroid department! I will certainly do my homework!
Very great full to get to know a great group of people even the the circumstances are not so great.

:)

Nichole

Welcome! Glad you found us. Yes Methotrexate helps many of us. I found that taking Folic Acid AND Leukovorin is helpful, since Methotrexate is likely to cause loss of hair. Also, I found the injections preferable to pills. Of course, there are other meds that are helpful. I too, prefer Medrol to Prednisone. Hope your EMG and biopsy went well today. Keep us posted.

At least now you have a diagnosis and can start finding the right treatment plan for you because we're all different and the treatment seems to evolve with each of us as we go. There are many options other than just prednisone. I haven't taken prednisone since I was first diagnosed in 2004 with DM. I understand pred can help a lot of people but that drug is just awful so I understand the nervousness about being offered it again. If the doc mentions taking pred again just tell them honestly how you feel. They will work with you.
-Nicole

Nichole, The first 3 months on methotrexate were rough for me and I wondered why take it with all the side effects and it doesnt even help! I got pretty ill the day after, flu like, metalic taste in my mouth, awful headaches, weakness it lasted for a day the day after my shot. And there was the hair loss, thats just downright depressing when the drug doesnt even seem to help. Then gradually the side effects lessened and I started getting my strength back, that was at about 4 months. I continued to have very painful cuticles and they added Plaquenil and by about 8 months I started feeling a lot better. I weaned off of prednisone during that time. Im seeing the doctor tomorrow and hope I get a good report, I think my bloodwork will be good. Hang in there, it takes time for the meds to work
Maruska