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Joined: Jul 2001
Posts: 316
stranger
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stranger
Joined: Jul 2001
Posts: 316
Okay - it's been about a million years since I talked about anything of substance here. Please indulge me...

I saw a rheumatologist in December and am preparing to go back for the clinic to review my results on February 3rd. I'd like to share my experience with all of you and hear yours - This place is great for that. Apologies if this turns out to be quite the read. I'm also going to try to leave my own judgements about my doc visit out because I'd like to hear your thoughts without the influence of my narrative.

I'm 36, with symptoms of AS since '87 and dx'd in '97. Had the typical back pain and recurring iritis in my left eye, but I've been SOLID for the last four years. I've been kicking AS with exercise, and I did the NSD for a year with great results in 2002. I feel as if I'm still benefiting from the NSD now, even after reintroducing limited starches into my diet in 2003. I do have an awareness of tightness in my body, but stretches can usually work it out in a relatively short amount of time. I can still do all of the things I want, and generally don't feel too burdened my AS despite being constantly aware of it. I feel pretty studly for a guy with a degenerative, genetic disease!

I had hyperhydrosis a lot last summer - I was busting a sweat often at unusual times and the people around me were fine. When I saw Dragonslayer in August he suggested I get my blood work checked and my numbers were high - ESR was 42 and CRP was 2.4. Clearly my body was fighting and it was time to see a rheumatologist.

I gave up after many failed attempts to get into a rheumy. They either weren't taking patients or had a 3+ month wait for an appointment. Eventually a friend at the U helped me out and got me an appointment there with a two week lead time. That was early December 2008.

After the three hour appointment of blood work, x-rays, metrics, and discussion, the head rheumatology doc let me know that they had an AS specialist in the clinic I would be following up with on my next visit in two months. He gave me a script for sulindac (an NSAID). I researched sulindac and had concerns about it because of other's experiences with it. I attempted to phone the new doc to discuss alternatives and my concerns (since she was the AS expert) and ask if I could receive the results of my blood work and xrays from her prior to my appointment two months later. The receptionist acted as the info guardian/relay and was not satisfactory in accuracy or response. It was like a game of Chinese Whispers. I decided to phone the lab direct and received my blood results: ESR 24 and CRP 1.7. Much better than before, but still high. I continued to press the clinic to speak with the doc regarding sulindac. She did attempt to call once, but left a non working call back number. Due to circumstances on my part (death in the family, imminent personal vacation, holidays around the corner) I decided to not fill the prescription and wait until February to have the conversation face-to-face.

In early January I requested my x-rays for a project I was working on and also received the full report that the rheumy will deliver to me (condensed) on Tuesday. I'll attach those here for your entertainment.

So, what exactly do I want and how can you help?

I'd like some talking points about sulindac and NSAID's so I don't come off as a nail biting neophyte internet Chicken Little. That would be good.

I'd really like to think I don't need drugs, period. Please tell me about your experiences - am I missing the boat based on my x-rays?

WWED (What Would Ebringer Do)?

If "normal" ESR is <10 and CRP is <0.8, where are you? What have you heard is the acceptable normal for people with AS? Is it different than the general population?

Anyone have a disease that is progressing without pain? Am I just numb to it? Am I the super macho doofus too dumb to realize I'm fusing?

I'm sure I'll think of more questions later.

It's interesting to note the number of times the left side is noted in the exam. I was surprised both sides of my Sacroiliac joint were not fused - only the left. It's also the left eye that is effected by iritis, not the right. Thank goodness I'm right brained - or maybe AS is the reason? j/k...

I'll save you the trouble of the the medical disclaimer. I know we don't pretend to be doctors here, even those members who are doctors. (I'm looking at you, Jeanna!)

Best,

dp









“One final paragraph of advice: do not burn yourself out. Be as I am a reluctant enthusiast…a part time crusader, a halfhearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it… while you can. While it is still there. – Edward Abbey
Joined: Feb 2006
Posts: 1,483
Silver_AS_Kicker
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Silver_AS_Kicker
Joined: Feb 2006
Posts: 1,483
Hi Dean Paul

My experience has some similarities with yours. I have had AS symptoms since 1991 and I was diagnosed in 2001. I am 50. I have a fused Left SI joint that fused very quickly with little pain early on and that gave me my diagnosis. I had a pinched nerve early on or there would have been no pain while I fused. My back however is not fusing yet, at least there are no signs of that on xrays and my right SI joint is not fusing either. My CRP was higher and was usually around 3.0 - 3.5 and I mostly treated with OTC aleve and exercise. I did use Viox for a year though shortly after diagnosis.

Even now my CRP is climbing higher for the last two years in spurts before settling back down and my AS is not very painful in the back or SI joints. My neck is stiff at times and my back stiffens at times as well. MY worst symptom over the years was iritis (both eyes) and plantars pain in the feet.

A new school of thought on AS thinks that the fusion and inflammation are not the same processes and are independent of each other. It is too early to tell if this is true or not. We do see AS patients continue to fuse even when the inflammation is totally controlled by the TNF drugs and their blood work is absent of inflammation markers. Some believe that for fusion to occur the inflammation has to be down.

Unfortunately there does not seem to be a proven med to stop the fusion process. Perhaps the new IL 23 drugs will do that. There is some preliminary research that nsaids can slow the fusing process but it was a small study and needs more follow-up.

I am not sure that helps just to let you know I have a similar experience but the planters was a major blow to me.

BTW I now take an nsaid called Etodolac on a as needed basis. It has a much better safety profile than many of the other nsaids and is more cox 2 selective than others. I also like relafen as it also has a better safety profile than the older nsaids. They can still cause problems but the odds are better they won't. I also take it with L-Glutamine since a small study says it can prevent GI problems associated with nsaids.

Last edited by drizzit; 02/01/09 03:35 AM.
Joined: Apr 2002
Posts: 3,607
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Joined: Apr 2002
Posts: 3,607
Hi Deanpaul! Nice to see you again. Not so nice regarding the circumstances though. Sure hope it's nothing serious going on.
Just my two cents, I am by no means a doctor - I highly doubt I'd be taking NSAIDs if I didn't feel some pretty good pain. Not sure if it's worth it, considering the side effects of long term use of the stuff, but that's something I supposed you'd have to weigh for yourself.
As for the ESR and CRP - those are nonspecific markers of inflammation (google them), so you could really have anything going on. Even an acute infection could cause your numbers to rise, which might have been why the second round of yours were lower. Listen to your body - it will tell you if something is wrong, and you're probably a better judge of your own health than the bloodwork you had done. You're your own best doctor, and by the sounds of it, you're doing a great job. Keep it up!

Joined: Nov 2007
Posts: 1,763
Diamond_AS_Kicker
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Diamond_AS_Kicker
Joined: Nov 2007
Posts: 1,763
Hi! and I just wanna say.. I enjoyed viewing your x-rays!!

I've heard stories of old ladies that were completely fused with no pain ever in their life, so it is possible you are one of those 'lucky' ones who has less pain, whether it is from being a 'super macho doofus too dumb to realize ' ... a malfunction in your body signaling pain or maybe because your bowel gas pattern is unremarkable...() who knows. but I'm glad the radiologist noted that last part! hehehehehe.. maybe some beans can help that and make you remarkable!?.... thankfully you are blessed with having a Studly life with little pain!

so.. now that I'm sure I made a complete fool of saying hi to a 'stranger'.. I am going to log off, finish my wine and go to bed before I do any more damage!


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


Joined: Nov 2007
Posts: 1,763
Diamond_AS_Kicker
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Diamond_AS_Kicker
Joined: Nov 2007
Posts: 1,763
ohhhh.. hey.. If my remarks completely offended you.. I APOLOGIZE with a sincere heart!! Nothing was meant to hurt you or make light of your questions.... I don't know how to answer your questions because this disease is so messed up that there is no guarantee in anything ...... what is for me is not for you or anyone else, it seems. It sucks for me and I am glad to rejoice that you are able to experience a full life of energy & activity! Please.. go do something fun & highly active for me.. OKAY?!

BTW.. my hubby has IBS from Gulf War syndrome and he HAS remarkable gas! ROFLOL!


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


Joined: Sep 2001
Posts: 2,762
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Joined: Sep 2001
Posts: 2,762
Hey Deanpaul
Good to see ya around. Thanks for posting your xrays and reports, sounds pretty familiar.

As for the Sulindac, it is an "Old School" NSAID that from what hear from my docs is seldom used anymore..With that said I have been taking it since the big Vioxx scare several years ago. I have had no side effects from it, but then I have had little theraputic effect from it either. I get better results from 4 OTC Ibuprofin twice a day. If I stick to strictly Sulindac, I find that I am eating a Pred. dose pac once a month or so to calm a flare.

Keep us posted..And good luck with the new rheumies..

Keep Kickin'AS
Chris


Keep Kickin'AS
Chris

Joined: Jul 2001
Posts: 316
stranger
OP Offline
stranger
Joined: Jul 2001
Posts: 316
Trudi,

Your post was awesome! Never worry with me, if we cannot have fun with the peculiarity of our condition we're giving it a reverence it does not deserve. I'm glad you posted.

My wife disagrees with the report - she feels my bowel gas is anything but unremarkable!

The only thing I was sensitive about in the x-ray report was the listed "indication" in the chart. They wrote "joint pain, ankylosing spondylitis". I actually edited that out of all but one of the posted x-rays. I did not complain of joint pain. My ego, my pride, and my inner-tough-guy are mad as hell that "joint pain" appeared on my chart. I feel like I've beat that part of AS (at least for now) and while I understand the doc needed a reason to order exams, I would have preferred if they had written something else. Anything else. Something like "patient's wife feels his bowel gas is remarkable" would have be preferable.

I've done the AS pain dance in the past pretty well. Maybe I've done something right with the NSD or maybe I'm in a happy phase of the disease. I don't know. All I can do is keep on keepin' on. For the first time in 8 years I'm talking with an actual rheumatologist. I'm in uncharted waters for me.


“One final paragraph of advice: do not burn yourself out. Be as I am a reluctant enthusiast…a part time crusader, a halfhearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it… while you can. While it is still there. – Edward Abbey
Joined: Jul 2001
Posts: 316
stranger
OP Offline
stranger
Joined: Jul 2001
Posts: 316
I haven't read about the possible separation of fusion and inflammation - that sounds huge.

I'll look around the forums here for that - do you have any outside links?

One positive about my three hour exam was that the docs had heard of Ebringer, and one had met him. I had printed out his papers from this site for them to review, and they said they would. There will be a quiz when I see them on Tuesday.

Plantars is a part of this disease that I am in total denial about. I ski, hike, and climb. I've been able to muscle through AS related back pain in the past, but I think foot pain would sit me out of those activities. A few years ago I had pain on the top of my foot, like a horse had stepped on it - only without the horse. I get the dry skin on my feet, but that may be a complication of living in a dry climate and wearing Keen sandals year round, even in the snow. I also get weird looking broken-blood vessel type things on the tops of both feet. I'm curious if that is AS related or activity caused. Did you have any of that?

Thanks for sharing your great info, it was really helpful.


“One final paragraph of advice: do not burn yourself out. Be as I am a reluctant enthusiast…a part time crusader, a halfhearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it… while you can. While it is still there. – Edward Abbey
Joined: Jul 2001
Posts: 316
stranger
OP Offline
stranger
Joined: Jul 2001
Posts: 316
Chris - great to see you around as well!

Thanks for the input about Sulindac. I'll let you know what happens.


“One final paragraph of advice: do not burn yourself out. Be as I am a reluctant enthusiast…a part time crusader, a halfhearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it… while you can. While it is still there. – Edward Abbey
Joined: Jul 2001
Posts: 316
stranger
OP Offline
stranger
Joined: Jul 2001
Posts: 316
I couldn't agree with you more about listening to our bodies, Megan.

Unfortunately I'm the awful combination of great intuition AND know-it-all. That means I usually go back to what my gut said to do at the outset, but I need to check the facts on something serious like this to make sure I'm not fooling myself into a truth that isn't true.

Story of my life, really!

Thanks for posting.


“One final paragraph of advice: do not burn yourself out. Be as I am a reluctant enthusiast…a part time crusader, a halfhearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it… while you can. While it is still there. – Edward Abbey
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