Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Bad part of birthday

Good part is in my birthday thread....

Here's the 'not good' part....

Arthritis (whatever I've got) is out of control. Pain is horrid most of the time. Morning stiffness lasts till dinnertime.

May: I've had 2 abscesses on my face, which forced me to stop all arthritis meds. Both have cleared up with copious amounts of antibiotics. It's been 2 weeks since last dose.

June: Since I had surgery (toes) in June, I've been on oxycodone and it's not enough much of the time. I hurt from lumbar on down to toes, in addition to hands.

July: In July, I was in such pain that I cried all the way home from work and estimated pain levels at 8-9 on Mankowski scale. It had been building for a couple of weeks. The next morning I started a steroid taper, despite being on antibiotics. It was great for 2 days, pretty good for another 5 days, then wasted away to nothing within 2 more weeks.

Saw rheumy in July and will continue on this path for the next 3 months and see if Enbrel will help. If it doesn't, I'm not sure what else to do. Is there any hope that another biologic would help?

August: Pain doc is doing what she can to help. I'm having several facet joints in lumbar spine injected this Friday. Next Friday, she is redoing the radiofrequency ablation on the SI joints. Bilateral in one visit, so I can avoid missing too much work. THAT'S going to be a [*bleep*]! Was discussing this and we agreed that I'll start a medrol pack the day before this procedure. (The trick will be waiting till then to start it...I hurt a lot right now) This will help the incredibly high amount of inflammation induced by the procedure. I'll be off work till Tuesday because of the Labor Day holiday. If it's really bad, I'll miss that day.

I took my first dose of MTX since early May just 4 days ago. If all goes well for 2 weeks (maybe 3 if I'm feeling pessimistic), I'll start Enbrel. If I get even ONE nasty infection, that's it for biologics. (The occasional sinus infection doesn't count. I get those regardless of biologics or not.)

But so much pain is in feet and legs. Pain doc can't help there. So there is the possibility of surgery to release some tension in the back of the leg (gastrocnemius recession). I discussed it briefly with the ortho doc who did my toes. We agreed to wait to see if getting back on meds, including Enbrel, will pull down the inflammation enough to let pain meds cover me. If not, that might help me. Hate to be entertaining the thoughts of surgery, but I hurt a lot and I have to keep working. My job provides the insurance for our family. Now that DH has prostate cancer, it will be tough to cover him.

So, now you've read why I didn't want to put this yukky stuff in my birthday thread.

Rumble, I'm shocked. This is waaay too much for one little person to handle - and I know I've been out of it for awhile, but I'm so sorry to hear of your hubby's dx as well!

Just going to throw out random ideas, and please forgive me if they're dumb - I realize this might be like throwing a pail of water on a house fire, but what about muscle relaxants or massage, gabapentin (neurontin), loads more prednisone (prob not the best idea considering you're already fighting a dandy of an infection), steroid injections, stronger opioids, TENS unit... wish I had some really good ideas, but I'm afraid I can't really think of much, I'm sorry. I'm thinking you could be on something stronger than oxycodone though. I know docs are hesitant to rx strong stuff, but given the amount of pain you're in, I think it's warranted. You can't be sleeping all that well... can you get something to help you sleep at least? I know it won't help the physical probs, but might help a tiny bit with the pain? Wishful thinking, perhaps.

Hope you can talk your doc into something stronger. Just sounds like sooo much you're dealing with.

lots of hugs

Have a TENS (good for back, not so hot for feet), already on gabapentin (1800mg/day), have rx for zanaflex, which helps some. I take zanaflex at bedtime. Infection is cleared now...I'm off antibiotics.

Never had a massage, so may be trying that sometime. And after that steroid taper next week, will have to wait to see if Enbrel will do the trick....or at least help and not hurt....or not hurt?

Next appt with pain doc is at end of October. By that time I'll know if the Enbrel is helping, etc. If not, I'll be asking about what to do for pain control. Thinking specifically of fentanyl patch. Not too crazy for oxycontin...especially if it's hard to come by. Pain doc is awesome...I know the SIJ RF will be great. If the facet injections work, she will do RF on them.

Thanks, Meagan.

so sorry about all the pain lately

wondering if your husband's cancer is adding stress and that's affecting your body too? i always deny a stress - inflammation connection but who knows?

have you tried ultrasound? i can't remember? when my feet were so awful that i could feel the PF tear when i walked (for me, edema from vioxx was what was exacerbating mine), only two things helped: contrast baths several times a day and ultrasound at the PTs. those things are worth a try to help settle things down if you haven't tried them already.

i know ultrasound may not be helpful for everyone, but for me, as you might remember, its so helpful, i bought my own, after a lot of research and louise's help here in picking one out.

in fact, right now, in a bit of a flare, ribs especially the top one keeps wanting to come out. left upper back / shoulder / neck all involved. every morning and every night my DH has been doing ultrasound on that area. i can't exactly tell you what it does, but its very helpful.

has also always been very helpful for tendon inflammation.

Oh Rumble...what a nightmare!!! I'm so sorry you're having to deal with so much...big hugs...

This is awful, I wish there was something we could do to help. Cyber hugs are nice but the can't make the pain go away.

My dear, I missed your birthday thread, so I'm going to make this thread happier ...

HAPPY BELATED BIRTHDAY!!!

I'm sorry you are in such horrible pain and so wish I could ease it for you.

Warm hugs,

Thanks everyone. I've been off work for DH's radiation treatments this week (last one today!). Pain is eased up a tiny bit since I've not been hoofing around on concrete floors for 8 hrs every evening. A major plus.

T-minus 8 days till SIJ RF, take 2
T-minus 7 days till steroids...LOL
T-minus 2 days till lumbar facet injections (L3-4, L4-5, L5-S1)

Relief is hopefully on the way.

(T-minus 2 weeks for Enbrel)

Steroids are good, even if they sometimes do bad things. My GI says they are the drug we love to hate. I personally think the the devil invented them. I am hoping and praying that the injections are a big success.

I hope NOT to have to rely on them because of the bad stuff, but relieved that I get relief when I have to use them. And I avoid it like the plague, but sometimes there's no other way.