Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Bad News

Mike, good that your pain is improving after the prednisone.

Mike,you may well have your pain pinpointed to hip socket, but as a more general comment I would like to follow up on Dave's post about enthesitis, because enthesitis can effect the groin area, and it can sometimes be difficult to distinguish between sources of pain in the hip/groin area. For my son, his pain was originally thought to be based on hip inflammation - suspected synovitis of the hip joint. However no fluid on ultrasound and a couple of "anatomic cues" pointed to his pain instead being due to enthesitis at the point of attachment of the tendon of the adductor muscle into the pelvis. During his stronger bouts of enthesitis inflammation, its involvement was bilateral, though still asymmetric with one leg being more strongly affected than the other. When he was strongly symptomatic he was unable to stand as he could not bear weight, and had difficulty with flexing his legs. At his very worst moment he could not even sit - he could not flex his legs at the hip, he could not even tolerate a bit of passive flexion caused by attempting to lift him.

THis was some time ago, as my son has been in remission - I'll add the following for anyone who is unfamiliar with my son's story: my son's enthesitis was due to probable giardia-induced reactive arthritis. Reactive arthritis is a member of the spondyloarthropathy family, the same family of conditions which includes AS. My son has been in remission for seven years following Flagyl given as a theraupeutic trial for possible giardia-induced reactive arthritis.

Mike, Hate to hear your going thru so much pain and frustration. Please keep us updated and know there is many of us out there that totaly relate to what your going thru. From everything you've posted you seem to be very strong and centered, and I believe that will pull you thru all that is going on. Stay Strong!
Love
Clara

Apple, coming to grips with AS in your life can induce depression, and I hope you find the support you need with us here at KA. So welcome to this forum, and here's a hug in the meantime...

Mike, I hear your concern. I'm in a nasty flare right now with both hips involved-I call it "stereo sciatica" because both sides are painful and I walk like a bowlegged cowgirl, on the outsides of my feet due to foot pain (at least I can walk). Like Linc, I thought it only ever affected one hip at a time, so how did I get so lucky? Anyway, you understand the technicalities and implications of the disease far more than many of us do, and I hope your fear is ultimately unwarranted. Due to the wonders of the human body and the network of nerves therein, it could be difficult to discern sometimes just where the problem is initiated. Here's hoping your meds kick in quickly and you find relief, so you can continue giving all your love and TLC to the babies and children you care for...

Hey Doc,

Very sorry to hear about this new pain that you are experiencing. The hips were the first big area of involvement for me after the spine, and frankly, they were far more painful than than any of the fusion I experienced in the spine. I definitely have some things I want to add to this thread, but I am very glad I read all of the other posts before I typed mine out, because many people have already made excellent points. Among them (and I'm sorry to everyone that I can't remember who said what in every case in order to provide correct attribution) were these ideas:

--Don't panic too much yet, as it could very well be a temporary thing tied into soft tissue problems more than joint problems. Thus, the approach you're taking at first by trying the different meds is a good one.
--Unilateral involvement really seems to be common in the hips, as almost everyone noted. Mine were very much that way--first the left hip deteriorated and became simply excruciating, whether I was sitting, standing, or laying in bed, then later the right one followed the EXACT same pattern. Anyone who has not experienced hip pain is lucky, lucky, lucky, as it is truly deserves its own circle in Dante's hell.
--Finally, while this seems to contradict the "don't panic" statement cited above, I agree with Mike about not waiting too long to get it replaced if you do in fact find out that it is the joint and it is wearing down to bone on bone. I put mine off and put mine off, and if I hadn't stumbled onto the doctor who did my spinal osteotomy purely by accident (a very long story told here before), I probably would have held off on the hips even longer. He actually wanted to do them both before the spine to release the muscle contractures (I think that's right) to see if I gained some height from that, but then he changed his mind and did only the left one before the spine. The right one ended up being done three years later.

I say I would have held off because I'd never had surgery at that time in my life, except for tonsils at age five. Thus, the whole idea of getting a hip replaced at age 30 just scared the hell out of me. I was scared of the intubation due to my bent spine, scared of the operation itself, and scared of the post-op pain. Turned out that was kind of foolish. I'll never forget waking up from the operation and coming out of the anesthesia stupor only to realize that I was in FAR less pain after being cut open than I was BEFORE the surgery!!!!! Quite simply, I had let the hip go for so long and get SO bad, that I had almost ceased to realize how bad the constant pain was and what it felt like to have NO pain in the hip. I'm not kidding Mike--waking up with the new hip was simply a miracle, and if I could have kicked myself in the rear for waiting so long to get it done, I would have.

Three years down the road, when I had the right hip done, exact same story, to the letter. I'm now 12 years down the road on one hip and 9 on the other, and they have been completely pain-free since the operations. Best decisions I ever made was getting them both replaced. I do realize that at my age, I am likely facing second replacements on both hips down the road when these wear out, but that's ok. That said, you face a much tougher decision than I did. From what I read in your posts and the job you have, I know that you are still in relatively good shape and still participate in athletics, etc., and your job is very physically demanding, so you will likely be tougher on new hips than I am. By the time I had mine done, my spine was totally fused (although straightened by the osteotomy), my shoulders were going (and are now gone), the knees were going (expect a top-level post on those soon), and the ankles were fusing (now fused pretty much). In other words, my athletic days were behind me, even golfing, and thus I don't do a lot that stresses the new hips--I expect them to last a good long time, likely longer than the average 20 years they expect these days.

I've gone on long enough, but I have more to say about this decision if you're interested in hearing it or talking about what went through my mind before and after the operations. If you would like to exchange more ideas, just PM me here at the site.

Good luck, and I hope it does just turn out to be a soft tissue problem that the medicine clears up.

Brad

You know, I'm wondering about a reactive arthritis, too.

Now my neck is stiff. I'm hoping it's just my imagination...

and I'm afraid that it isn't.

gidday,Iam sorry you are feeling so worried and i hope you will continue with your job.One of the stratigies I have try to put into play is trying to understand and deal with fear and pain on a personal [self] level and my results with this are that it is definately normal to go thru a whole range of emotions but once the initial worry abates you nearly always go into self preservation mode and you just find your self dealing with the ups and downs as they come. try not to worry as stress is definately NOT a good thing ...just wake up each day and hope that today will be better...think positive.AM SENDING SOME GOOD WISHES YOUR WAY...JUDE2

Hey Mike.

Sorry to hear that you're flaring so badly. Remember my posts about bilaternal knee effusions (among others) on internal medicine the summer of 2004? God, I was terrified. Sadly, I haven't had the benefit of a biologic, so I can't imagine the psychological factor of being pain-free and then having the pain reappear - I imagine that's really tough though. That being said, I've managed to get through 4 years of medical school with solely NSAIDs and DMARDs and pain meds. You can get through this, you just have to tackle each day one at a time, and try not to look too far ahead.

I've been on Arava since my huge flare the summer of 2004. It's not a cure all, but I've had some benefits from it. Sadly, I've also had loads of s/e. The nausea was overwhelming when I was first on it, and it's half life is super super long, so it was difficult to get it under control. I'd suggest starting it really slow, and gradually building the dose (which I did after withdrawing from it completely, waiting a few weeks and restarting). I'd also recommend having an rx of metoclopramide around, just in case. I tolerate the Arava better now, but my threshold for nausea is MUCH lower than it was before. I've also had other GI involvement (not going to spell that out for you, but let's just say it's better when I'm on opioids than not), so keep that in mind.

Arava is a pyrimidine synthesis inhibitor, whereas MTX interrupts folic acid synthesis, so it won't likely produce a folate defeciency anemia like MTX can, but it's job is to stop new cell growth just in a different way. You need routine blood tests, especially to look at liver and kidney function. You can drink moderately on both drugs, though I chose to opt on the side of caution and drink minimally more than moderately (insert reminder of low threshold for nausea here).

Re: hip replacement. Stop putting the cart in front of the horse Mike! This is the first time you've had hip pain, so I'm fairly certain you don't have nearly enough damage there to require a THR. And like Evelyn says, the hip is a tricky area, it's so hard to know exactly what is going on there, it may be a soft tissue issue. And remember Mike hip replacements have a finite life span. You're young. Unless it's absolutely necessary do you want to sign up for a life of serial replacements? Not to mention the fact that it's a serious surgery with a long recovery time.

I know it's scary. Give the arava some time to work. Consider some pain meds and alternative therapies (weren't you the one who suggested yoga in call rooms). It's really hard to remember the basics some times after long periods of wellness, but it's all in there. Dig deep, and find some of those gems of old. You know we'll be here when the going gets rough.

Best wishes,
Jeanna

Mike,

Being the poster child for steroids, they arent so bad if you have to be on them for awhile.

Just dont panic, you are young, you are a Dr. so you have access to the best medical care and even some day if you have to have a hip replacement, lots of people have had much success with them.

I have also been on MTX its not so bad either, it didnt do anything for me.

Just try and stay focused, try to keep your stress levels down as much as possible.

Keep us updated, Lisa

((Mike)) I have thought about my earlier post to you. I didn't give you anything but what I thought was caring. Then I thought it might not have come out right. I know so much about all the pain. I know so much about spending so much of your life getting ready for a career and then being afraid it is not going to happen. (For me, it didn't, I went on disability at 43) But there are better meds now. I just wanted to be encouraging to you. I hope it didn't sound too "motherly". )

Hope you are having a better day.
Possi

hi- boy i can understand how you feel....i had an xray here in fl in oct, and took it to my orthopod doc for her to look at.
now i saw on this site a drawing of what the sacroillitis joint looks like when it is fused, the simplistic rendering drawing
i look at my own xray and compare it to the one i had done in oct, and my left SI jpoint was fused but no radiologist said anytihng about it in his report although it was clear to my UNTRAINED eye when i compared it to the drawing on this board. that is how simple it was for me to figure it out.
now i take my xrays and trot over to my orthopod she glances up at it towards the lights and puts it down and says to me you need shots in your back ( epidurals)and makes no mention of the fused SI join to me on the left side.
now i get another xray taken last week for my rhuemy to look at, although i brought in my oct xray that he threw up in the air to look at and makes no mention of what i clearly see to the naked eye trained or not.
he says nothing to me and orders a new set of xrays which were taken last week.
what? i dont get it. why does he need new xrays when the ones from oct show clearly the difference between the two SI joint on either side?
i think they churn people for money down here in fl. the stories i could tell you would make your hair stand on end.
the doctors are SO GOSH DARN BAD.
and why didnt that radiologist note the sacroillitis on the oct xray? did he need an engraved prescription to do this? couldnt he have noted it as an incidential?
of course he could have if he knew what he was doing.

i am beginning to think i know almost as much as these so-called doctors here, i am sorry, i dont mean to sound so awfully negative towards doctors and know they are only human (although some think they know it all)
i am just so bothered by it all. the lack of a reality and a real caring or understanding is very pervasive here in florida...sorry for my rant it was not directed towards you are a doctor....but as a fellow man who is battling this same illness that i have