As usual this is going to be a vent. lol. I have received the first three benlysta treatments (every two weeks) and I was starting to feel better. I first noticed that some of the fog in my head was clearing up and I actually had the desire to do housework. (Crazy, I know!) My joints were feeling good, the fibro was still there, but I will take what I can get. Anyways, I started out slow but I was getting burned out so fast. Absolutely no energy and I was so disappointed.
Today I had planned on redoing the shelf paper in two cabinets… well you would have thought I climbed Mt. Everest. I got two pieces cut and laid down and then I was about dead. All of my joints are swollen and are achy and hurting. I just want to cry. My dr had told me not to get my hopes up and expect a miracle cure but I was actually, stupidly, thinking of the word remission. I know that was jumping way ahead of things but I was feeling so good, pain wise.
So now I have pretty much destroyed my kitchen! LOL! My wonderful husband is picking up something for dinner because we can’t find the counter tops and I can barely move.
I’m not giving up hope for a remission, but I am just feeling bummed out right now. Thank you all my dear friends for letting me vent. It feels so good knowing you all are out there and know what I mean.
::hugs:: It's so hard when we want to do more than we're used to or have been capable of previously... only to discover it's still a bit beyond us. My sympathies for your discouragement. Hang in there!
Give the benlysta time. I was on it for about a year and at the time I didnt even realize how good I was doing. Now looking back I realized last summer was the best summer I’ve had in years. I did so many things I was not ale to before. I went on trips, went boating, camping and swimming at the beach. I didnt need my daily naps most of the time. I have been off of the infusion for about 4 monthes now and I can’t do anything. I need to nap every day and sometimes twice. I never get everything I need when I go shopping because after the first few store aisles I’m exhausted and just want to go home. Feeling better can come on so gradually that you don’t even notice right away, but feeling worse seems to just hit you like a brick wall. Good luck and I hope it really starts to help you.
Well you can’t get your infusion if your sick. I had a uti and had to cancel until that was under control then I got the flu a couple of times and had to cancel. I have an appointment with my rheumatologist tomorrow and I’m hoping that I can start taking it again. My previous order for it ran out. I have my fingers crossed.
That sounds like quite a lot of bed time to me. i really hope your dr can get you back on it and you be able to stay well. hopefully you will do as good as before. (syy for spelling, i took my sleeping pill already) lol