Originally Posted by
LisaT
This thread is really helpful. Thanks Marta, for starting it and for all the detailed info on weaning off of prednisone. I want to try. I'm on 10 mg now and just had my second RTX five days ago. i'll wait a bit longer, as I feel like I go through a temporary withdrawal after the 100mg given with the infusion. In the days post-infusion I have been getting the same aches, headaches, etc. as when weaning down. So I'll wait until I'm back to my own personal normal (if I wait until I feel good or well, I'm afraid it might not happen; I can't remember the last time I felt consistently good for a while. I'm praying the RTX will accomplish that, but don't want to assume anything as I know it affects everyone differently).
Everyone is right, you're beautiful at all the different stages in your pics. I also understand the feeling of looking in the mirror and not recognizing yourself. I feel so shallow for being so fixated on it, but the extra weight and seeing my chipmunk cheeks in photos upset me immensely. (My profile pic is from a few months back before i went up to 10 mg and started puffing up. :wink1: Who wants their pred uglies to be their profile pic, after all?)
I'm always amazed by other Weggies' stories of biking, skiing and hiking and don't really understand how you do it. Is the fatigue less of an issue for some? Do you just push through it amd go anyways, and does that eventually make it improve? I've had brutal fatigue for years, long before diagnosis (initially diagnosed as fibro, then RA, now dual doagnosis of RA and GPA and nobody has discredited or confirmed fibro). Every single time I try to get back into some form of exercise other than walking (even yoga), I end up in muscle spasm and pain, fatigue, flare, or all of the above. It's discouraging and I don't want to just give up, but I'm not sure how to plan for success. Maybe i just have to do dog walks for now and hope the rituxan gives me superpowers. I felt a little better yesterday and went for my first decent walk since the infusion, and did a few things around the house. I tried really hard not to overdo it. Today I'm a mess again (pain, neck all jammed up, no energy). So I'm back on the couch. Doctors and well-meaning non-spoonies are constantly advising me to exercise. I feel that until they've lived my reality, they have no clue. So I'm bringing it up here in the hopes that you or others who deal with this might have some concrete advice that works. Sorry to whine a little. Sorry it's also a little off-topic. Hopefully it's related enough that everyone will forgive me.