Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Ugh...I just get so stinking frustrated dealing with this disease! My rheumy had me tapering off Prednisone. I wasnt doing well with it, so we slowly went back up. I am up to 10 mg again. It has helped with most of my pain at that level though I still have this persistent pain in my left arm that starts in my shoulder and shoots all the way down to the tips of my fingers. It aches ALL THE TIME. My knee pain has gotten better on the higher dose of Prednisone which is good. My moodiness is not so good. I feel like a bit of a basket case.
I called my rheumy yesterday and 8 hours later her nurse called me back. I wasnt home so she left a message. I am to decrease my Prednisone by 2.5 mg each week. Huh??? They just told me last week that part of why I probably relapsed before was because I was tapering too quickly. Now they are telling me to decrease by 2.5 mg a week???? I dont get it at all. She is also increasing my MTX injection from 15 mg a week to 20. I just went back up to 10 mg of the Prednisone on Wednesday. Now I am tapering already??? I couldnt call back because it was too late but I'm going to call on Monday and find out how all of this makes sense. My CK's were low which is good but still. This doctor is the one who told me you cant just treat off the CK's and now it seems that is exactly what she is doing. AND one week she says we tapered too quickly and the next week she is having me taper even more quickly. ??? I am so confused and frustrated. My energy level is zilch. I dont sleep well at all. I am also starting a new job on the 29th.
I also continue to struggle with the "foggy brain" issues and feel off and on like I have a sinus infection or something. I'm scheduled with my family doctor on Friday.
Any advice or suggestions? I will take anything I can get at this point.
I called my rheumy yesterday and 8 hours later her nurse called me back. I wasnt home so she left a message. I am to decrease my Prednisone by 2.5 mg each week. Huh??? They just told me last week that part of why I probably relapsed before was because I was tapering too quickly. Now they are telling me to decrease by 2.5 mg a week???? I dont get it at all. She is also increasing my MTX injection from 15 mg a week to 20. I just went back up to 10 mg of the Prednisone on Wednesday. Now I am tapering already??? I couldnt call back because it was too late but I'm going to call on Monday and find out how all of this makes sense. My CK's were low which is good but still. This doctor is the one who told me you cant just treat off the CK's and now it seems that is exactly what she is doing. AND one week she says we tapered too quickly and the next week she is having me taper even more quickly. ??? I am so confused and frustrated. My energy level is zilch. I dont sleep well at all. I am also starting a new job on the 29th.
I also continue to struggle with the "foggy brain" issues and feel off and on like I have a sinus infection or something. I'm scheduled with my family doctor on Friday.
Any advice or suggestions? I will take anything I can get at this point.
Love hugs and prayers
-:)
Canada, hopefully you will do ok with your taper. I'm sure its like anything else, and not everyone has the same experience. Dont be surprised if you DO start having some side effects with the taper but I hope for your sake you are one of the lucky ones who do not! :)
Shoulder Pain - I had the exact pain - went to a chiropractor and he
said it was a spinal misalignment (C5 and C6). He did an adjustment and I felt much better. He also had this electrode patch that I had on my upper back muscles that felt great - you might try that.
CK's low - that is great news - your body is not in such jeopardy as it was.
Low energy - try to make yourself do something each day like a short walk. Just a change of pace may help. I am in pain but I make myself walk as I don't want to be an invalid and I want to strengthen my upper legs.
Sleep - I have that trouble too - too hot or too cold. Sometimes I break out in sweat. Try to have your room really dark and cool with blankets on hand.
Foggy Brain - I make lists and play computer card games.
Other - drink lots of water cut out refined sugar. Herbs for inflammation and hair - Black Current Oil and Bioten.
Hope these suggestions help. Congratulations on the new job - always an exciting time :)!
Hugs
Maruska
It is okay to get a second opinion, or third opinion and find a good fit for someone who will listen and help you weigh if a symptom is something to worry about or not.
I am a fan of a big teaching hospital with a team dedicated to Myositis or DM or the MDA clinics to find dedicated knowledgeable folks who want to help us. The TMA is a good place to start, on their medical advisory board are a number of doctors who have a passion for Myositis. I found mine there, and have been very encouraged.
My best to you, Shawna
As far as getting conflicting info from the doctor's office, I call and talk to the nurse and explain my concern. It is very likely they are not reading your chart thoroughly and just trying to help you get off the Prednisone when the doctor really didn't want to do that yet. I don't take any medicinal advice over voicemail. It is too easy to misunderstand.
I agree with Shawna. If you aren't comfortable with your doctor, find someone else. You need someone who knows this disease (or at the very least, learn about it) and will help you manage it to feel better.
As far as the brain fog, I have that too. It is real difficult for me because I have always had a keen memory. Now I keep lists and find myself telling people I just don't remember things well. The biggest issue is with my family sharing stories. I just explain I don't remember. Then I usually joke about having a "50 first dates" disease (from the movie) where she wakes up not remembering anything each morning. It is like a fresh start to every day! I can laugh about it but really it is irritating. Try to hang in there.
I can so relate to your situation as I am also in the same place. I've been offline for awhile so I'm going to have to play catch up. The first thing I recommend is having a good cry or even a screaming fit all by yourself. It helps to lower the tension in your mind and body. Working out would be great, unless you are like me - too exhausted to exercise and too weak to go to the gym.
I have quit calling my Rheumy's office because the answer that gets back to me never makes sense, like yours. I think the nurses are playing doctor sometimes.. Anyway, it upsets me too much when I get their stupid answers, so I've just been listening to how I feel and going from there. My Rheumy is wonderful, but his nurses are another story. From my original 60 mg prednisone I was weaned down to 10 mg and all went well. At 9 mg I started feeling a little lousy but it seemed to get better. 8 mg was rough and I finally gave in and went back to 9 mg for 3 days, then to 8.5mg and 3 days later to 8 mg. and it was better. 3 weeks later I went down to 7 and I feel lovely NOT!!! Emotions, moods, strength and everything else is out of wack. My memory left me months ago and has only gotten worse, I'm hoping it improves after/ if I'm off Prednisone.
You are not feeling like do do alone..
Hugs,
Lauren
Glad to see you back here. We missed you.
@angie1026 and @la7de
The "foggy brain" issues have definitely improved for me, although my brain still isn't back to normal. I did take a supplement called Neuro PS for a couple months after I got off prednisone in May. I'm encouraged by the improvement I've experienced and hope that the "fog" continues to clear. So there is hope for you.
Nanny, you are STILL have issues with "foggy brain" and have been off Prednisone since last MAY????? omg..please say this wont last that long!!