Hi everyone! I haven't posted in a very long while, but have been reading pretty regularly. My encounters with 2 back surgeries, followed by bacterial meningitis and then osteomyelitis made for a very long long summer. But I am on the mend and getting back on track health wise (I think). Prior to my surgery I had been taking Enbrel for 5 months (along with plaq, and mtx). Prior to Enbrel, I had been on Humira for 6 mos with no benefit. I didn't start back on Enbrel until August, so it's been a couple of months back on all meds (finally). It has been slow going and I have some good days, but most days are painful - though tolerable with some help with pain meds. I am noticing morning stiffness has become worse, with pain in most joints. Again this is manageable, but definitely feels like it is involving more places.
My question is how do I know when the meds are working? What should I be expecting? Is living with tolerable pain the norm, or should the Enbrel be making this better? When I went in for my last nuclear bone scan for the osteomyelitis, the bones in my hips lit up like Christmas. Also, when they were putting me in place for the scan and my foot passed through the screen, my foot also was bright white which caused the tech to ask me what was going on down there? If I have less pain but have this major inflammation going on inside, shouldn't that be addressed? I have a rheumy appointment next month and can talk to him about this, but I am interested in other people's experiences. I don't want to be an alarmist for every little thing that RA seems to be sharing with my body, but I don't want to stay on a med if it should be giving me better results either. My rheumy did say at my last visit that I needed to be on the Enbrel for 6 mos continually before we could try something else, the next step being doing 2 shots per week instead of one.
I should mention that I have visible changes going on in my toes. The smaller toes are starting to turn in towards the big toes on both feet. I don't necessarily have pain in the places where this is happening though. Geez, this is baffling. Any input is appreciated!
DawnI don't have any answers but wish you well and hope you get the help you need.I haven't figured it out either - the doctors go by your blood tests, but if anyone has an idea of what you should be feeling if your RA meds are successful, I would love to know too. I'm clueless too but sending well wishes your way...you've really had a heck of a summer!bump
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