Wonup, I am sorry to hear of your high CPK. I know that you are having a tough time, but you are a big inspiration to all of us.

You have just started with PM. The disease is most difficult in the early stages. It is important to not worry and keep in touch with your doctor. Your CPK was very high and has come down considerably.

I would recommend joining The Myositis Association on google. You can read articles from the association on PM, DM, and IBM. You would also be able to talk to a wider audience that enjoys being well educated on PM. I think you will find the scientific answers to your PM on that site.

I personally enjoy pulling up google and reading articles on my questions about DM. I am one of those people who enjoy finding the truth. I take what I suspect about my health and discuss the issues with my doctor. The current right temporal lobe epilepsy diagnosis that I received has led me to articles which I can use to discuss issues with the doctor.

In addition to reading articles, it is very important to have copies of your medical tests. The findings of your muscle biopsy, blood tests, lung tests etc..let you know what is going on in your body.

I have put in a prayer for you. Keep us posted.

Hi Wonup -were you diagnosed this past August? Usually with a CPK that is high initially, they do IV steroids and IVIG from what I have read. Keep track of ck and med levels. Usually they change up meds in 6 months if they need to tweak it. Sounds like your dr is watching it so that is good. -:)

Hi Wonup -were you diagnosed this past August? Usually with a CPK that is high initially, they do IV steroids and IVIG from what I have read. Keep track of ck and med levels. Usually they change up meds in 6 months if they need to tweak it. Sounds like your dr is watching it so that is good. -:)

Hi Wonup -were you diagnosed this past August? Usually with a CPK that is high initially, they do IV steroids and IVIG from what I have read. Keep track of ck and med levels. Usually they change up meds in 6 months if they need to tweak it. Sounds like your dr is watching it so that is good. -:)

I agree with Madison that what I have observed is those with a high CPK that doesn't drop quickly requires different treatment such as Rituxan or IVIG. Has your doctor mentioned those?

I'm also glad to hear your doctor is watching you close. That is good.

My Neuro that was assigned to me in the hospital, and who had not treated myositis before, finally put me on 40mg prednisone with the CPK. And a saline drip that got me to slightly under 5000 CPK when I left August 6. At the time, I begged to start MTX and he said no. I saw him again in two weeks, and by then was in a wheelchair, and begged to go up to 80 mg. Neuro reluctantly agreed. Still no MTX, so I begged to see a Rheumy. Saw her next week, and she slapped me on MTX. Took 6 weeks but am now stronger, but lots of muscle damage done. I asked about IVIg and Rituxin, also asked the Doc at OHSU, but they all say no. So we'll see what CPK is next month. That'll be 4 months from diagnosis.

Wonup, do you mean they gave you iv steroids with your hospitalization?? That would make more sense than saline. That is just salt water in normal iv.
I think you are on the right path, but pulling the trigger on the IVIG treatment is hard. My bill for my first month was 35,000 for one treatment that took 3 days. They have to know you are not responding to the first line treatments to be willing to fight the insurance to approve the next level of treatment. I know it is hard and long and so very very frustrating, but the best news is that you are seeing improvement regularly!!! I'd move the appointment up with the Rheumy, say 3 weeks instead of 4 and give some lame excuse that your schedule is off, or you need to get it in before the end of the year for insurance issues, husbands schedule, whatever it takes. Keep asking, and keep doing everything you can. It for me was not until i had the biggest flare that we looked to IVIG. I had two more minor flares we treated with going back up on steroids and upping the Cellcept till it hit my liver functioning and we had to stop that.
You are doing great, and i know it is so tedious and hard to wait... Keep at it and someday it will be different.
we are rooting for you...

Hi Shawna, no for 3 days the hospital just did a saline drip to flush kidneys. Neuro would not allow other meds until another Doc intervened and the last day I was in the hospital I began the oral prednisone. The saline flush seemed to get the CPK below 5000. I did great at PT last night, adding weights to legs, so I should be able to get out of a chair soon!

Glad to hear that you did well in PT, wonup, but sorry that your recuperation seems so slow. I am praying for you, that you will start to do better and that your doctors will have the wisdom needed to treat you correctly. This disease is truly frustrating at many levels. Best wishes to you.

Thanks Nanny. I really need to get back on my feet and get back to work consulting, and help run our retail store as now we are into holiday season. So prayers are appreciated. And you guys have all been so helpful! The MTX has kicked in,so things are picking up!