Hi Betty, Hi Cindy
It has been a couple of months since my last post. I managed to suffer thru my six months of double blind placebo and then went into open label in early September. Horror of horrors, I actually got worse rather than better. The longer I was on Enbrel the worse I got. By week 2 of open label I was calling the study office, my rheumy, my PCP and begging for pain relief. I was on Darvocet or Vicodin daily during my open label phase. The pain in my hands got so bad that I was rubbing them and leaving bruises all over the place. My ankles and feet swelled up and hurt so bad I could hardly walk some days, other days I could not even get out of bed. By week 8 of open label I ended up in the ER because the pain was at suicide levels. That was when I decided to opt out of the study...and the study doc agreed.
We were both dumbfounded as to why Enbrel had the opposite effect on me.
I see my regular rheumy on Thursday and we will see about trying Remicade.
I was utterly disappointed that Enbrel did not work for me. After reading your posts for so many months I was hoping and praying that I too would become an "Energizer Bunny".
I am glad that Enbrel works for you two. I am not trying to discourage anyone off of Enbrel...I just happened to be that one person in 100,000 that did not respond to this treatment.
Hopefully, we will find something that will work for me.
Take care. Angela
