Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group and the fight goes on.....

Saw my Rhuemy last Friday before my infusion. I was given a pain assesment sheet to fill out while I was waiting. The quiz was pretty straight forward with questions like tying your shoes or getting dressed. I filled it all out and had time to spare so I added up all the numbers beside each answer, I had a 13 out of 60. Thought that was pretty good till the Dr. came in and saw the number.

My rhuemy said he wants to work within the parameters of my Remicade dosage and frequency with a nsaid that might help bring down inflammation and pain. The new nsaid is Arthotec which I have never heard of. We will see how it goes. He also gave me a script for a dose pak of predinsone in case we have plans that I can't afford to miss. 3 refills, what? a vacation from pain? We plan on going upto a cottage after Christmas...might use it then.

In the mean time I still have pain in every joint especially my shoulders, neck and heels. My wrists and hands have been more sore than usual too.

The colder weather hasn't helped either, thank goodness for fireplaces and electric blankets.

I'm not overly fond of cold weather either, Jeff. BLECH!!

I hope the new med additions help. Funny, it often occurs to me that if I'm feeling this much on a biologic, how much worse would it be without? I know the biologics are working and doing me a ton of good, tho. Hope they're worth it for you, too.

Warm hugs,

hi!

hope the new meds help you even more than the remicade alone! i loved pred the week i was on it in august, really feel it saved my butt.....and feet and back and ...........

speaking of fireplaces and electric blankets, i love my heating pads, never sit in my recliner without one, and now at work, find myself leaning back on one quite often when i have a lot of desk work to do! a heated mattress pad and heated car seat are two things i'm thinking about as well.

as for hands and feet, my paraffin wax bath is a nice little affordable luxary

and my neck / shoulder / upper back, the new chiro, doesn't really do anything much to my bones, which kind of surprised me when i started, but the soft tissue work he does, and the one day he focussed on massaging the neck and trap area, the gentlest massage i had ever gotten (as compared to all the PT work i had done in the past) and yet, the most effective. afterwards it was like wow, i have no idea what he just did, but it really seemed to do the trick.

as for those questionaires, i feel like they're so geared to what i imagine is related to RA, though i could be wrong, cause never questions regarding things like sitting, traveling, or the other things i have the most trouble with, so i tend to add them in. even with the hands, its not so much the fine motor skill stuff that is hard to do, but the repetitive motion stuff like typing, turning the pages of a book or other paperwork, stuff like that. wish they'd expand the quiz, that's why i add in the things i can't do well that are missing, hoping they'll see the need.

anyway, hope the new drugs make the holidays as pain reduced as possible!

Jeff, I'm not a fan of cold weather either. I have been in sunny warm Florida for 6 weeks now watching the cold weather and snow move in at home. I have 1 more week then I'll be back home in the deep freeze until June. Oh, I took Arthrotec years ago but forget if it helped at all or not. Hope it works for you.
Cindy

Hi, Jeff! I take Arthotec daily. It really has cut back on my inflammation and pain felt. I no longer even think of using extra strength Tylenol for the pain. Hope the Arthrotec works for you.

Angie

Hi Jeff,

I fill out those 2 double-sided pain and function assessment sheets at every infusion appt... and last time they added a 3rd sheet. They are useful to track changes in how you're doing over time and how well the meds are continuing to work (or not). It's been fun for me on remicade, being able to tick off a bunch of 0's, 1's and 2's.

Arthotec is a combination of the stomach protector Misoprostol and Diclofenac Sodium (aka. Voltaren, Voltarol (UK)). I've been on Voltaren for approx 28 yrs daily and find it works well and without side effects for me. I was able to reduce my daily dose once I began remicade, but I can't go without it for long. I also take ssz. Anyway, just so you know, combinations can be very effective so I hope this proves to help you!

The cold up here is trying to kill me! I really need new windows in this joint.

Good luck with the change!
mig

Hey Sue,

The assessment sheets do seem a bit geared towards RA, imo. But adding in your own on the bottom won't change the score. There is research behind the development of each question, so they've gone through actual trials before they can be considered as 'valid' measure of disease activity, pain or function. The purpose is to compare a patient's own status over time, relative to their own scores/history, to gain a better picture of how well we're doing, how well a med is working (or not), and to signal any changes. They are not used to compare one patient to another.

Anything new or important going on, (outside of what is covered in the questions), is just something to tell your doc. My doc will always ask me how I am doing anyway, regardless of my score.

Glad you got some meds that will help you out on your vacation.
That would be really cool to be at a cottage for the hollidays.I would go to ours ,but it isnt winterized.
Freezing cold here in Ontario Canada.
Hope you had a great Thanksgiving.
John

yeh, i know what you are saying is true, doesn't mean i don't think they need changing!

funny thing, just this morning, woke so so sore from doing housework yesterday. normally i just do a little here and a little there and don't feel the effects. but its thanksgiving break so i cleaned a closet, caught up with my laundry, just on my feet a lot yesterday. could really feel the plantar fasciitis, my right hamstring tendon enthesis behind my right knee, some other attachment point at the top of my left knee, my thoracic back, and hands, all so stiff and sore.

so they want to know all these fine motor skills, that's not the problem, its the repetitive motion stuff that is a killer! one day they'll understand that better i suppose! and i think it will take all of us to educate them.

It's probable that repetitive motion injuries are not commonly associated with inflammatory arthritis and that's why they're not included on the score sheets. When my symptoms are bad, repetitive motion isn't even an option - my joints are too stiff and painful to do anything much.

Back when I used to get repetitive motion injuries my joints would be fine and then I'd hit year end and be using the mouse way more than usual and so develop tendinitis in my right elbow. But that was years before the inflammatory arthritis kicked in and was clearly caused by usage not my autoimmune system.

Given that, it's unlikely that "all of us" will educate them - they're more likely to be confirmed that their current measures are appropriate.