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06-11-2010, 06:30 PM
#361
Oh Sangye please do go slow. I know how badly you want and need to get off pred, but your body tells you how it is so listen to it. I can only tell you that I too look at my husbands pictures and sadly can not accompany him on his hikes. It is a double whammy because on his side he has lost a companion in more ways than one. Think though of the things that you can do and the fact that you can take care of yourself even if it is in a basement suite.
Jolanta
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06-11-2010, 07:49 PM
#362
As above Sangye.
I know how badly you want to get free from Pred, but if it turns out that you need a little for maintainance, it won't be the end of the world.
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06-12-2010, 12:58 AM
#363
Thanks, guys. I don't think I'll need to stay on it, I just dropped it too fast. I feel better already today.
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06-12-2010, 02:49 AM
#364
Glad you are feeling better today Sangye. Try to stay positive and you will get there!
About the hiking, maybe you should just try some flat surface walking outside.
That is about the only excersie I enjoy doing if I have to!
I bet aquatic therapy would help a lot of Wegener's patients too.
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06-12-2010, 09:12 AM
#365
Brooke, walking is a major problem for me. If I stand or walk for longer than 5-10 minutes (10 is on a very good day), my legs start to fill up with fluid which quickly becomes quite painful. It might takes days for it to go back down. Also, I get incredibly weak like I'm going to collapse. It's not a muscular thing, like you'd get from being out of shape. It's a loss of chi. Hard to explain unless you've ever experienced it. This is a huge problem that no one's been able to solve. It was getting a little better the last week while the pred taper was going well, but right now it's terrible again. It doesn't improve if I try to increase the time or distance slowly. There's no working with it. I think it's a combo of Wegs, kidney energy weakness due to pred, and damage from tons of blood clots.
I've done aquatic therapy and agree that it's great for us. But because I've been so sick, I haven't been back in the pool since December. I'm hoping to get back in by the end of June.
The loss of hiking is more than just the exercise, which I loved. It's about being out in nature, experiencing the seasons and enjoying it all with my dogs. I loved to use my body and be strong. Not in an egotistic way, just feeling like I had vitality. I miss it.
Last edited by Sangye; 06-12-2010 at 09:15 AM.
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06-13-2010, 11:50 PM
#366
Even though I increased back to 0.75mg pred for a couple days I continued to go downhill. Yesterday I was so weak I could barely function. In reviewing my daily log, it looks like I was doing great at 1mg and only got into trouble when I dropped below it. So this morning when I woke up feeling absolutely horrible--much worse than yesterday-- I decided to increase it back to 1mg.
I'm a little disappointed, but really not that much. One mg is still much better than 4mg, where I began. At 1 mg I felt good and could actually function. I felt hopeful about getting stronger and even back to work someday. Right now I feel so awful--exactly how I've felt for 4 yrs since dx-- that I can't imagine how I'll get through the day. My plan is to stay at 1mg for at least a week--longer if necessary-- until I am thoroughly back to a good place again and then consider dropping to 0.75mg again. I see Dr Seo in 1.5 weeks, and will get his opinion.
Other than the worsening extreme weakness and fatigue, the other alarming sign that popped up this week was insomnia. I'd be falling asleep during the day, but when my head hit the pillow--wide awake. That's been a consistent indicator of Wegs for me. I didn't get the restlessness at night (my Red Alert for active Wegs) so I don't think I thoroughly woke up the dog. Just tripped on his chain....
Last edited by Sangye; 06-13-2010 at 11:55 PM.
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06-14-2010, 12:54 AM
#367
I would plan on returning to 1mg for at least a month and then perhaps try the alternate day method of reducing further if that is what you really need to do. However, I would be considering sticking with a small dose on a more permanent basis. If you were feeling good at 1mg that might be a good compromise.
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06-14-2010, 03:55 AM
#368
Sangye, I agree with Jack. I remember you saying that your 4 mg of prednisone is like, "taking 40 mg of prednisone." I would taper slowly and stay on it a month. If you get worse Sangy you need to email your Rhuemy. I am a little worried.
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06-14-2010, 07:20 AM
#369
be careful Sangye we need you around to make use smile DEE x ps feet and all !
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06-14-2010, 09:53 AM
#370
I do feel a bit better this evening, but still have a headache. It'll probably take another day to convince my body that it's on 1mg again. Don't worry you guys, it was just one week of going downhill and I caught it in time. It's way too early to project into the future, in terms of thinking I'll have to stay on pred forever. I'm just gonna take it one week at a time.
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