Question:
Hi Cindy, I thought I’d drop a postnote just to say I know what you mean I know how you feel it just doesn’t pay you to turn over in the bed on a bad day.But I make myself turn over an laugh at myself just to say to myself I told you. You could do it!!!!!May God Bless You beverly. – Hide quoted text — Show quoted text -AllawishesB1 wrote: > I do understand BJ I keep feeling worse and worse and have had the flare from > hell for months now and all I get is well we will find someone to do the iv > cytoxan then another problem and month go by and i am still feeling bad now I > have the 3rd respritory infection since Sept. in my lungs I am just tired of it > i guess. We try to make it throught the day they say wait and see. > Cindy
Response:
Yes friends,I do think from time to time. Just to review. I have been feeling less well for some time now. I have all the symptoms that lead up to a flare. I have been off the pred for a little over a month. I am on Imuran (150mg). I saw my rheumy June 25 and had blood work done that day. She called to say that my WBC and platelets had dropped quite a bit. She is off for this month. I am to have another blood test Monday,she will phone for results and, if they go lower will send me to my hematologist. Now, this is when the thinking part comes in to play. My hemo guy told my rheumy last time that he thought I would have to stay on some pred and that the Imuran alone wouldn’t do it. Why wouldn’t the rheumy just put me on a low dose of pred? She saw my rash and I told her I wasn’t feeling great,then she got blood work that showed a problem. I was on IV stuff and high pred to bring my platelets up and was in so much pain.Why wait until I am in deep doo doo before acting? By the way, my platelet problem is autoimmune and part of my lupus. Regards to all, BJ
Response:
I do understand BJ I keep feeling worse and worse and have had the flare from hell for months now and all I get is well we will find someone to do the iv cytoxan then another problem and month go by and i am still feeling bad now I have the 3rd respritory infection since Sept. in my lungs I am just tired of it i guess. We try to make it throught the day they say wait and see. Cindy
Response:
<<Why wouldn’t the rheumy just put me on a low dose of pred? She saw my rash and I told her I wasn’t feeling great,then she got blood work that showed a problem. I was on IV stuff and high pred to bring my platelets up and was in so much pain.Why wait until I am in deep doo doo before acting? >> I sure wish I knew. We’ve had the same problem before. Perhaps part of the reason is the slow cautious nature of rheumatologists in general. Perhaps you should discuss it with your rheumatologist further to find out why she hasn’t acted on the hematologist’s advice. Sandra
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