WOW! 80mg of prednisone! I hope you feel better soon. Everyone has a different CPK level where they start to feel better. I can not imagine having a 10,000 CPK level. I would just take it easy and not rush anything. Good luck and keep us posted.

Thanks for your thoughts. My Neuro has never treated myositis before. He is trying ringer me to a rheumy and to a myositis Doc up at Oregon Health Sciences University, because he feels "clueless". I wondered at my first appointment out of the hospital with this Neuro because he has posters of the 3 stooges in his office. Did not inspire confidence. I just want to get back walking and out of a wheelchair. I am a consultant, run a business, and life is on hold until I can function again. Yikes!

One time when I was in such bad shape, I went to a rheumy at UC Davis. She had me get infusions of 500 mg Solumedrol 2 days in a row. That did the trick. The side effects are there, but they only last a few days. I would hope you soon get to a rheumy who has dealt with problems like yours and is up to date on the newest methods of treatment. Taking 80 mg Prednisone orally is more than I've heard of. Sorry you're having this difficult experience. Wish you speedy success in in finding the right doctor and the right treatment.

So sorry you have had to join our club. This is a great site for support from others who will understand what you are going thru. Be sure to find TMA the Myositis Association. They have an annual Conference with 18 physicians on a board of directors who are all in the forefront of diagnosing and treatning and researching on Myositis. They all seem to have a passion for this very rare and very complex disease. There is not an easy recipe for a doctor to follow, so finding a consult with someone very familiar with Myositis might be a first goal. The treatment you are on is the right first step, but some are steroid resistant and harder to treat and need IVIG from the outset to get out of the progressive downward slope. I hope that in the next week or two you see some improvement. Is it easier to get out of bed? is it easier to do anything?? I measured very tiny things at that stage for my own sanity and to help me decide if a treatment has any effect. Finding the right Neurologist or Rheumatologist is key. The TMA board is a good place to start. JOhn Hopkins is the largest Myositis specific clinic in the US. But there are other great places too. Most of the good clinics are at large teaching hospitals. This disease is a marathon not ever a sprint. EVen when doing well, knowing when to change a plan takes time. Most respond to steroids in the 6 weeks or before stage, so you might see some improvement on 80mg, and in the next week or so. Keep in close contact with your MD. If he says he has never seen this before, ask him to refer you to the best in the field. someone familiar with Myositis. Get online and research yourself or have a friend do it for you. YOu will need the best care and as soon as you can get in to see them.
Sending you patience and strength, Shawna DM for 18 months, doing well now

Hi all: I was hoping to hear from Shawna, as I think I read you are a nurse. The Rheumy in town has some myositis experience, I called around and requested her. She was booked until January, but I begged, pleaded and wept until I got a Sept. 13 appt. OHSU, the research hospital in Portland has a myositis Doc who can see me also in Sept. It took 11 phone calls and endless arm twisting with Neuro office to get the referrals. Wow. Health care takes a lot of work as a patient advocate.Until I get muscle biopsy back, it's hard to tell if I'm resistant. CPK is dropping pretty quickly, though.

That is great Wonup, good work on allt he phone calls and red tape. I would definately see both of them and compare notes. Ask them if they will work together with you. I see my specialist at Stanford every 3 or 4 months and someone at home in between. I lean on the different groups at different times for different things.
that is like 2-3 weeks away and by then you may know more about how your body is reacting to the steroids.
Feel free to send me private notes too. I am an RN, and did quite a bit of advice nursing in my day. I went to the Myositis Conference in Las Vegas last year, but will not be able to get to Florida. Should be again near West Coast next year and i will have to wait for that.

You have two weeks. Get full copies of all your medical records mailed to you. You will want masters, then make 3 or 4 copies, or have someone do it for you to give to each new master team you meet. I have a spread sheet i use for noting everything. When they ask you Hey when you had the EMG how many mg of steroid were you on?? I can flip back and answer with authority. I have labs charted and all the cancer checks too. A few binders in a rolling suit case went with me the whole first year. Now i can manage with my phone, a few copies and a clip board!!!

So What should we call you?? I k now you Want UP, but it helps to have a name to connect all the info too.

Keep asking, feel free to email me, and try to stay mentally strong. Shawna

Hi, wonup, and welcome to this great community of people. I trust you will be encouraged by being here. I was diagnosed with PM in 2008, and put on 100 mg. of prednisone and then tapered for the next 3 years. Fortunately I responded well to prednisone. Once your doctors find the right combination of meds for you and those meds begin to work, you will be amazed at how much better you will feel. But it does take time. Glad you will be seeing more knowledgeable doctors. Keep us informed of your progress. Best wishes to you!

You guys are awesome. In my work life I do non profit board development, leadership training and strategic planning, so persistence is my middle name. I will do as Shawna suggests and get all of my records in a notebook. I already have a spreadsheet of blood panel comparisons over the last 10 years, and now am adding blood pressure and CPK measurements, liver enzymes, etc. I have to say, the additional 20 mg of prednisone to the 60 I was taking got my attention. But if nanny can do 100, I can do 80. I am guessing in couple of days I'll have a feel if this works. I'll email Shawna...how do I do that? My name is Heidi, and as hard as this bizarre turn of events is, I'm sure this adds to my complete empathy for being disabled, caring about people who just aren't feeling we'll, and doing more advocacy for more integrated health care.

HI
I would urge you to explore alternative treatment. Steroids and methotrexate do not work. They act as band aids and ultimately destroy your liver. I am completely healed and did the anti-niotic therapy. I was helped by www.rheumatic.org I also am totally gluten free and feel that this has a huge impact on reducing the inflammation. Most specialist poo-poo the antibiotic treatment but there are plenty who have taken the time to read the studies and prescribe it to their patients. I am living, walking, breathing, proof that it works and that life can be amazing again. I was 32 when diagnosed. I wanted to die it was that horrible. I am 50 now and on no meds, do hot yoga, can run, jump, and even brush my hair all day without pain or restriction. You owe it to yourself to explore effective treatments. There are plenty of medical studies that prove that it works. The success is dependent on the patient's drive (and I know it is so hard when you are ill) and determination. Doctors come in all different attitudes and it is essential that you have one with a modern., open minded attitude. The alternative is to go with the flow and be sustained not better. Let me know if I can be of help to you.

Thank you for the thoughts about antibiotics. With the rampant global use, and abuse, of antibiotics, a number of devastating diseases are now resistant to antibiotics. I am going to choose to not contribute to that problem, or allow myself to become resistant in case I really need them some day. So after consideration, I am going to do the more traditional course of treatment. Thanks, though.

Have to chime in here.

Since you went from 10,000 CPK to 4300, I'd say that is excellent and the prednisone IS working.

If you have been immobile for a while, it will take time to build up movement again. You might try doing what you can in bed, like trying to lift your leg or even just exercise your muscles by tightening them. Do whatever little things you can.

Feel good about the CPK drop, it's a very good thing.

Peace,
Kathleen

it took me 3.5 mnths and extensive physio therapy to get my musclees moving

Hi Everyone, Thanks for all of the good threads I have been able to read to help me mentally prepare a bit for the road ahead. I go to PT 2 a week, and my spouse has learned to help me passively stretch. I was lap swimming 3 times a week and lifting weights 2 a week up until 8 weeks ago, so being laid up is horrid, as you all have expressed frustration with. After 3 days of 80 mg of prednisone, I'm feeling like things are not as tight. PT said she has noticed more lumber muscles. Eyes feel like they are bulging. Yikes. I am grateful to any and all advice from you who have traveled this path. I hope I can offer some wisdom about this to someone else someday.....