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.
To all who have responded to my earlier post ... thank you soo much! I am not feeling well enough to respond to each of you right now because I'm feeling really lousy.
I called the docs office to see if I should taper down the Imuran by 1/2 pill that she had me taking. I was feeling so bad yesterday still. I didn't hear from her so I decided last night to stop the extra 1/2 pill I had been taking all week to see if I would feel better. So, that put me down to the original 2 pills I was taking. I felt more like myself this morning. My stomach felt better and I had more energy. Well, I had my shower today, which takes a lot of strength, but I needed one and wanted to go out for dinner and a movie with hubby. I started to feel achey, but went to dinner anyway. I started aching worse and worse and couldn't finish my meal. So hubby brought me home to rest before the movie. I wound up falling asleep in my chair for 1/2 hour. I felt a bit better, but we decided not to go to the movies. I'm still not feeling well and my stomach is upset too. Do you think it is because I stopped taking the extra 1/2 pill? Should I go back up on it tonight? I guess I could call the doc on call and ask. I just thought I'd start here since you guys are familiar with it. I can't imagine that that minor of a change would cause me to have such a bad reaction, can you? Shoot, I feel bad either way at this point ...
Thanks again for helping me!
Hugs,
Sheri
I called the docs office to see if I should taper down the Imuran by 1/2 pill that she had me taking. I was feeling so bad yesterday still. I didn't hear from her so I decided last night to stop the extra 1/2 pill I had been taking all week to see if I would feel better. So, that put me down to the original 2 pills I was taking. I felt more like myself this morning. My stomach felt better and I had more energy. Well, I had my shower today, which takes a lot of strength, but I needed one and wanted to go out for dinner and a movie with hubby. I started to feel achey, but went to dinner anyway. I started aching worse and worse and couldn't finish my meal. So hubby brought me home to rest before the movie. I wound up falling asleep in my chair for 1/2 hour. I felt a bit better, but we decided not to go to the movies. I'm still not feeling well and my stomach is upset too. Do you think it is because I stopped taking the extra 1/2 pill? Should I go back up on it tonight? I guess I could call the doc on call and ask. I just thought I'd start here since you guys are familiar with it. I can't imagine that that minor of a change would cause me to have such a bad reaction, can you? Shoot, I feel bad either way at this point ...
Thanks again for helping me!
Hugs,
Sheri
Good luck, tomorrow is monday and you should be able to make a new plan with your doctor then.
Anyway, thank all of you for your replies, I truly appreciate it. As it wound up, when I went to take my dose last night (doc has me taking it before bed) I totally had spaced having my prescription filled with the new dosing adjustment, so I had run out of my old presription! Figures, huh? So, I wound up not taking anything last night. I read about it on-line today and it says to keep the dosing schedule. So, hubby is getting ready right now to take my prescription in to the pharmacy. I will take 2 pills tonight and call my doc tomorrow am and figure it all out.
When I first started taking it, I remember it took a week or two to adjust and I had some stomach issues and some tiredness but that went away and I was doing fine until she had me take more again, lol. This time my body really didn't like it, so we'll see if I just need to give it more time again. It is worth it because I am finally noticing that I can get up out of a chair easier and my CRP levels have finally gotten better, from 28 to 15, normal being 5.
It is just hard to remain on a medicine when your body is saying, what the heck are you doing to me? lol! I certainly won't keep taking it if it continues to make me sick after the time the doc says to give it. I was on methotrexate for a long time and it made me sick every week for about 3 days. That was worse.
My doc is hoping to get me off of Prednisone, ultimately. I've been on it for years now. Every time I try to come off of it, my body freaks out, pain, swelling, etc. I'm on 18 mg now, so hopefully I can successfully wean off of it, at least down to 5 mg, which is the goal now I guess.
Okay, well thanks again so much! Hope you are all feeling well today.
xoxo
Sheri