Hi there. It took eight months of treatment before I felt I had turned a corner and a year before I could exercise and start to feel better. This disease is a Marathon rather than a Sprint. Time and patience are needed as much as the Meds. Try yo do a little more each day to strengthen the muscles you have. You will get there. Best wishes. Autumm

My experience is that the muscles don't just come back. You have to work them to gain them back. For me, it has been a very slow process...over years. I'm still not positive I will ever be back to "normal". My goal at this point is to maintain what I have and continue to work on the little muscles we take for granted. Right now, I am working on my ankles. Who does that? But they have gotten weak enough, my balance is off.

I didn't start tapering until my levels were stable. We mostly used my CK as a guide. It took me several years to get off Prednisone but now I've been off over a year. I still take Methotrexate every week.

Thank you guys very much for the responses...and the reminder and motivation.
you know as well as me sometimes its just hard to be patient . i am so lucky to not be on steriodes or anything other then the act gel.
next week i have an apt with my doc to see whats next. i hope that i will have 0-2 more weeks of the injections and find my lvls are normal.
i feel great and i cant forget how far i have come . its very frustrating in many ways. i want to start a family..i want to be able to go out and drink..i want to just be normal again...
i think i need a vacay...lol :)

thanks again guys

lexisgirl: what exercises are you doing for your ankles? Mine are very weak.
I do hydrotherapy to maintain my muscles.

I think there are several things that impact balance including general muscle strength but my ankles are weaker. My PT wanted me to walk on uneven surface and exercise/stand on a 1/2 balance ball. I feel those are too advanced for me yet. She also wanted me to balance on one foot. I think I am working my ankles while riding the recumbent bike. I also rotate them while seated and point and flex my feet to help. I plan to find some more exercises on my own as well.

Angelamichelle, all I can say is "be patient." When I was first diagnosed with PM I believed I would be back to normal in a few months. The truth is, I've been up and down for 5 years. I've been close to well, and I've been really really sick. Don't get discouraged if things take a little while. As long as you're moving in the right direction, you're doing well.

thanks! :)
i had my follow up today and he said im doing great.
i have a emg scheduled next week to compare from where i was last year to now. he said he doesnt think its going to be bad and said he thinks that "he wont be seeing me much more after this"...i have been med free for a week today and i feel great! so fingers crossed for me

Not to rain on your parade but I don't believe that there is such a thing as us returning back to normal or even close to normal, which is a word which I have never liked. I have been told that I will never have muscle strength that I once had, but that I could continue to exercise to gain as much strenght as possible, but what I am finding after each PT session or my own workout is that I can do more, such as the walk to and from the parking lot to the bleachers for my grands soccer game the other night. I wanted to cheer myself on because I was able to keep up with the others and have a conversation along the way. That is the 1st time in two years that I have been able to do that. I did have my walker and I felt the pain the next day, but I did it and it was great. I never know from one day to the next what I can do but I give it a try. My rheumy stopped the Acthar and I don't know why. I didn't feel that the IVG was worth it after three sessions. My CPK is around 300 and the best it has been in a very, very long time. I saw a new neurologist on Monday and she has ordered a new EMG which I will have next week and she is looking at my latest labs to see if she can tell me why my ankles have looked as if they have a couple of eggs attahced to each side for months. She believes that it has something to do with my blood glucose levels being so high, but we will see.

I was told today that my therapy sessions end as of next week which is fine with me as I beleive that I can do the exercise alone. I did have to push the agency that I was assigned to and will probably go with a different agency if I need therapy in the future. I had two PT that were sent to me who weren't any better than me guessing what should be done. They spent the majority of the visits sitting on my loveseat telling me how to kick my legs out. I am so happy with my current PT. He has given me some good exercises and once his visits are over i will continue what he has taught me. So whatever we can do to help ourselves to get stronger is probably the best we can do. Now I have to work on my memory and control of my hands. I hope this helps some.

Hi Brenda. I have been doing exercises since September and only now feeling the benefits. My Physiotherapist told me it would take six months of constant work. I do the exercises on my own now and walk every day. I can now get in and out of the bath without help. I sleep at night without the pain in my knees and I am stronger. There is no quick fix for us, if we do the work we see the rewards. I am pleased I don't need pain Meds as the exercise really has helped. I hope it works out well for you too Brenda. Autumm

Hello there. I am new here...

I was just as weak as what u had described..however, I believe that you could overcome this with patience and perseverance. Start small but do it regularly. I practice getting up and down from a seated position each morning after breakfast. Later in the afternoon i practice lifting household things like small cushions above my head. It was tough and I remember struggling to do so. However I believed doing all that helped in the recovery slowly but surely. Perhaps you could look at things that you could do more now than previously and take it one at a time. It would help you be motivated and before you know it,you would be able to do all the things u love again (: Stay positive yea!

Thanks for all the advise and tips and optimism :-)
I'm a week and 3 days 'clean' now and I feel great! Thursday will be the test. Wish me luck and say a prayer

Angelamic. With you in spirit. Wishing you all the very best. Autumm

autumm,
thank you so much i really appreciate it :)