During my last appointment my rheumy looked disappointed when I told her predisone worked but I do not want to take it often. Here I was complaining, but unwilling to accept what works. I have actually done 2-3 tapers and they help but I still have enough pain after and I hear about the withdrawal probs a lot and heart issues I'm not convinced enough to take them. Its like pain meds you have to be careful not to over do it but that is hard to tell when you feel OK. I have a very physical job that means if not aware of what is painful will most definitely lead to further damage. How does one know when to start a taper? Just when your hands swell or for increased pain in the area you always have as soon as you finish one? Basically I don't want them everyday but confused about when I should take them.
Sorry for the multiple post! Tried to paste and Copt my accidental blog using my phone, my bad.
Hey Rachael,
The prednisone stuff can be really tricky. Per my rheumy (and everyone's has a different approach) prednisone is not for your everyday aches and pains. It's reserved for when you. just. can't. any. longer. For when the inflammation and the fatigue are so bad that daily function is affected. And to be used with caution. And not for long periods (unless as noted by your rheumy).
My rheumy won't give it to me. I think he would if he felt certain Enbrel stopped working, but we hope that doesn't happen anytime soon. This past week I felt like crap. By Thursday I was sure that Enbrel wasn't working anymore. I took more OTC pain meds, Advil, Tylenol--than I normally would take and felt really down with anxiety about what my body was doing. By Saturday I was feeling a lot better and today I feel good! So, Enbrel didn't stop working! I figured out, and my rheumy had told me long ago: with PsA, normal activities can give us pain when there shouldn't be pain. I was up and down the basement stairs a gazillion times last Sunday--which started my feet hurting. I went to P.t. Tuesday and did 20 minutes of strengthening work, which made my muscles sore. So, I spent all those days afterwards feeling cruddy. These are activities that never would have caused me pain before I had PsA.
But, it helps me to know exactly what causes my pain and that it will go away. Now, that's just me and the present. Someday, maybe the pain won't go away after a few days and I'll need to switch biologics and take more pain meds. But, I'm trying to avoid using prednisone, just because I'm not sure it's safe, and I'm thinking it causes more problems down the road.
Thanks Janeatiu! I didn’t get chance to get all the info when I moved the post so glad you replied again! My rheumy didn’t really clarify it but I know I want to avoid them for me if possible. That helps a lot.
Grandma J thanks as well. I struggle like you trying decide what is PSA and what it just doing too much these days. My job is very unpredictable and I either work my rear off or still do tons of walking and crouching down. Never know what to expect until I get there though but i’ve been doing this a long time and its my “normal” Last week was by far one of the hardest in awhile but I have to say I really think Enbrel is starting to work very quickly for me. AWESOME! At the risk of jinxing myself my back/ribs are better than they have been in months.
So glad to hear that, Rachael!!! I thought Enbrel was a miracle cure for the first two months, I felt so good. Then my back went out. Someone on here said maybe I overdid it, feeling so good. Before I started Enbrel my back was so stiff I could barely get up from seated or lying down. Enbrel made my back flexible again, but maybe with all that flexibility I moved some things that weren't used to moving so much. Idk, but that made sense to me. Fighting off two colds wasn't good, either, because I think my immune system was on overdrive and that affected how the Enbrel worked, too. Things seem to be getting better again--I'm crossing my fingers (trying to, anyway) and thinking positive! (It sure is much easier to be optimistic when one's feeling good vs feeling sick all over!)
So just a word of caution--don't overdo it, and avoid germs! Haha--easier said than done! But, know that you could have ups and downs, even when Enbrel is working. :-)