Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group pain management - supplement

Immediately after an RFA, I'll get tons more inflammation, but you understood this. Afterwards, it's back to my usual levels. As a rule, only thing that really changes my inflammation levels (which don't seem to affect either ESR or CRP) is steroids, which lower it--making me feel much better, or exceeding my personal limits, which raise it--increasing pain levels. The various procedures don't affect it longitudinally in any way, other than in the case of epidurals--which is measured in weeks, not months.

Was that what you were looking for?

Hi Rumble,
Thank you.
Yes. I have not been prescribed steroid in last 5 years. May be I may have to try that to reduce the inflammation. I shall discuss with my doc when i consult him.

Jay

I think we all end up with whichever approach seems most effective for us.

For me, ice, ultrasound, cortisone injections and then Aleve, steroids, and now Humira all helped me the very most (all things that lowered inflammation) helped me the most.

Partly, my doctors never went the pain med route, so I never ended up down that path. That's just the way my path went.

I started Humira in June. Was doing well til I flared in August (like I always do). My rheumy told me to do a course of methylprednisone, so I did. Normally I do it for 6 days, but this time I did it for 10 days. Then I struggled a little without it, but now back to feeling good on Humira.

Could you try a short pred taper to supplement your biologic like my rheumy had me do?

I thought I'd be able to stop the pred once on Humira. That might happen over time. But for now, instead of pred every 10-12 weeks, it was 17 weeks in between the pred once on Humira. Maybe I'll only need it for my bad august flares? Time will tell.

But the pain procedures and meds that others use may be what they need.
Again, we do what we need to do.

I guess if you use a pain procedure or med, just make sure you don't over do it anymore than you have to.

Like Rumble said, the nerve ablation allows her to do her job.
For Pea, having the pain pump allows her to essentially not be in bed.

Sometimes just living and/or working is "overdoing it", but we gotta live, gotta work.....

I also use my pain management to keep me functional. It really is of little value if i just sit, well i cannot do that, or lay around without pain doing nothing, that seems dumb. I have come to a point where vicoprofen and tramadol no longer help me to be as functional as I like to be. Hate that the affect has warn off. Would switch meds around but i do not feel it will help. In my 66th year I am beginning to feel hopeless that anything much will help. Have had mostly back pain over the years but now my left hand/ knuckles have swollen up, looks like a catchers mit, and has turned quite red and warm. The bottom of my feet feel like i have no padding and am walking on a large rock on the bottom of my right heel! Oh joy, more AS surprises. Sorry to complain so but cannot do this with the family anymore they are sick of it and do not really understand. Thanks for listening.

Hey Jay,
My pump functions on it's own. I have a refill every eight weeks and it is all calibrated so I do nothing. If I need some extra, I have a Personal Manger device that allows me to give myself a bolus or extra dose of medication and then shuts me out for an hour. I only use these if I wake up stiff and with the weather changing, using it almost every morning. It has given me such a new quality of life that I never knew was possible again.

Thank's for the shout out. I will see my Rheumy on Monday and talk about my feet and my swollen fingers and toes (sausage digits).

Hi Sue,
Prednisone was prescribed to me before I was on biological, 6 years back. At that time since, I was in very bad flare, nothing worked SSZ, Pred etc., I am thinking of discussing with my doc after a week or so on pred.
Rumble. Pea and yourself all mentioned that we should be within our limits even when on pain management. I fully agree. I have been following that very meticulously, by noting all my movements of the day. One chance of trying a little extra caused problem. In fact, I did walked that distance sometime back but before 8 weeks of remicade infusion. Hence, I took that chance. But that did not work, putting me into regretting my action.

Jay

Hi Eddy,
Sorry to note your condition.
Yes. others who do not experience this pain will not understand.

Jay

Hi Pea,
Nice to hear that you got a new quality of life with pain pump. I fully understand. By the by, what medication is used for filling.

Jay