Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Whining Section

OK, I'll whine with everyone else:

Stopped Enbrel for Simponi. Didn't think Enbrel was doing much to justify that expense, though it's to insurance, rather than me. After stopping the Enbrel, I waited 4 weeks to start Simponi. After 4 weeks, I learned it WAS doing something. So now I wonder if Simponi will help and if I was stupid to stop Enbrel. And if it doesn't, would Enbrel work at least as well as before. (If this doesn't make sense, consider it my exercise in getting this whine off my chest..LOL) Now it's been just over 2.5 weeks since 1st Simponi injection. I want results NOW. Not in another 2 or 3 months, but NOW!!!!!!!!

My stamina (such that it was) has gone out the window. My morning stiffness (that I didn't realize had gotten better while on Enbrel) returned and brought company. Work has gotten harder because we are shorter-staffed and now have to cover even more than before people started transferring to other departments and jobs.

I have a trip-of-a-lifetime coming up in September (Alaskan cruise). My rheumy will prescribe enough steroids to make me comfortable enough to do what I want to do (which will be everything that I can manage!) But what if it DOESN'T make things better?

SI hurts (but pain will soon go away because of the RF), but that leaves legs, feet, knees, hands and neck. Narcotics and Mobic carry most of the way, but not always. But, at least my elbows don't hurt. And the bridge of my nose is doing quite well, thank you.

But I realize I have lots of blessings, too. Though I'd like it if my remaining son would contact me and let me know how he's getting on. Possi, we'd like to hear from you, even if you are griping.

i had to smile at that, as that's one of my most frequent quotes. when the rheumies ask me which joints HAVE BEEN involved over the years, i tell them, "my elbows have been pretty good!" just seems more efficient, and always seems to get the point across.

never thought about the tip of my nose before. yes, i'll focus on that for awhile. that might get itchy, but rarely hurts, unless i bang into something

Lon, you crack me up! And I love you, too! I am going to practice whinnying when my two grandnieces come to visit this morning. They are both 9 and I am CERTAIN they will remind me of how it's done correctly.

Six months!!! That's too long. I watched a TEDTalk on pain the other day. There's a series called "Brave Neuro World" that is amazing. It turns out that pain itself is now considered it's own disease by many neurologists! If you find a rheumy that says there's nothing wrong with you, she/he needs to refer you to a pain specialist.

Good idea with the gratitude list!
I remember now that you've been breathing High Park fire air for weeks!

Exactly! LOL! I don't know how you keep your sense of humor.

Oh, I hope so much your trip is a good one! And now I feel much better that I've "listened" to everyone else's woes. Hey, on that note, the bridge of my nose doesn't hurt either!

I called my sister back yesterday and told her to go to a pain clinic. She's had lupus & RA since she was in her mid-20's and has always just "bucked-up" under the pain. Sheesh, she's 62 now! But there's a good Livestrong.com page on sustained release narcotics, so I sent that to her with a pain map and quality of life page to fill out and take to the specialist. She agreed to do it today.

We might be down, but not out!