Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Undifferentiated Spondyloarthropathy?

Dear KA family -

Sorry that I'm needing to be a bit vague here, but I know we have a few undifferentiated spondys among us. I was wondering if you would share your experiences of diagnosis (ie how difficult or straightforward was it) and your experiences of treatment (ie what's worked for you)? Hopefully I'll be able to divulge my reasons for asking in the future, but I'm a huge believer of people telling their own stories, and as it's not my story to tell, I don't really feel I can elaborate ...

If you've already shared your story elsewhere, please don't feel obligated to share again, just give me a hint of where I can find the story (or link it if you have the time / inclination).

Thanks v much in advance for your help.

hugs,
Jeanna

Good question Jeanna. I'd like to hear any answers too.

For me, my first real issue was my eyes in 1991. I was pregnant with my first child, and they thought the iritis was due to head trauma. By the time I had gotten passed around by local eye doctors and to a specialist, I had almost lost my vision. I was told not to worry about it from then on, as iritis didn't typically hit a person more than once.

I had incidents of pain and inflammation elsewhere after (hips mainly), but never related them to the iritis. Then the iritis was back in 96, and my opthamologist did the bloodwork that showed the HLA B27 gene. She said not to worry about it, as the chance of my developing any other conditions related to it were very slim.

I was young, dumb, and didn't have the internet. So I ignored it. I saw her a few more times for iritis before she retired. The doctor she sent my charts to, I HATED. So I didn't go back. I decided that any time I flared I would see a new doctor until I found one I liked. Every one would say, "Have you ever been diagnosed with ankylosing spondylitis?" I would say no, and that would be that. No referral to a rheumy.

It wasn't until 2010, when I got a flare in both eyes, that the doctor I found was insistent that I see a rheumy. It took forever to get in to see her. She took x-rays, half of my blood, and 6 months later had me back for more x-rays, when she confirmed AS.

I now see my regular eye doctor for drops and check ups, have a specialist I can drive to for shots (stubborn flares), and am seeing the rheumy again in May.

I think most of the reason I wasn't diagnosed earlier was that I just didn't realize I could get online and find a group like this, coupled with the fact that no eye doctor prior had ever seemed overly concerned, until my current doctor. I am counting it all as a blessing... Being a bit older I am much more computer savvy than I was, am prepared to follow NSD strictly, and be more involved in my treatment decisions.

I am doing very well on the NSD, and have made stretching and exercise a priority, as well as vitamin supplements. C, D, E, calcium, beta carotene, and a super B complex. However when I got the supplements I had no idea they may have starch in them. I will have to change brands for the beta carotene when it's gone. As I realize things, I will eliminate them until I am completely starch free.

I think I should go ahead and note here as well, that I just wrote off other symptoms as related to nothing really. I've had horrible stiffness in my lower back for 9 years, that I've just attributed to a bad bed, and a job that requires I be on my feet 10 hours a day. Also credited swollen ankles to the job, neck pain to the laptop use, and shortness of breath to the panic attacks I've had all my life.

I did think it was odd that I really conquered the panic attacks in my late 20's with meditation. When I would get short of breath I just thought that was a panic attack trying to happen.

I have a frozen shoulder presently, and the other just recovering from frozen shoulder. Also wasn't sent to a rheumy for that. I credited that to work as well, or over reaching. The orthopedic doctor that gave me cortisone for the first one said they were a mystery and to just deal with it until it "thawed". Gave me some exercises and sent me on my way.

So mostly, all my fault for not being more proactive and putting 2 and 2 and 2 together...

hi strutsy,

i've been dx'ed with undiff spondy, now by two rheumies, and i do believe it fits me very well.

i started having tendon/ligament symptoms, very dramatically, in 1998 at the age of 35. i had never had any problems like this that i am aware prior. then in the winter i did something to a rib, now i realize it must have been "out of alignment", but the pain only lasted a week so i thought nothing of it. then within 2 weeks of one another, i messed up a dq tendon very badly (eventually needed PT, ultrasound, strengthening, cortisone injection), did something to that rib again, then really messed up my "what i thought was my upper back / rhomboids and now years later doctors and i realize is my neck" pulling a skirt down fast, and that has been with me ever since (facet joint injections next monday, 13.5 years later- how's that for length in dx ) 1999-2003, lots of ultrasound of triggerpoints in upper back, that helped a lot. 2002-2003, lots of trigger point injections in the upper back and that did help a lot. zanaflex also helpful. in the beginning i took it every 6 hours, now its mostly just at bedtime.

in oct 2000 my SI kicked in. and in my typical fashion, started off with a bang. never a symptom, then walking up the stairs from lunch, a tightness in my lower back, bent over to relieve the pressure (what did i know back then) and my lats went into such major spasms could barely get upright again. off to the PT who put my SI joint back in, major spasms for the next 12 hours or so, then a week using the walker, then a month to rehab those muscles with ultrasound, etc in the PT. the SI was chronically bad til a cortisone injection in may 2002 helped it tremendously for a year, til my next major, just as bad, flare. its been like that ever since, horrible flares where one can barely walk from the bed to the bathroom, then rehab it til the next flare. cortisone again in 2009 after a year of it being rather chronic. then a flector patch 24/7 over the SI since april 2010, what a life saver.

in between all of that, lots of tendon / ligament problems: torn ulnar ligament, torn rotator cuff, torn attachment of the IF/TFL bands at the trochanter, torn bicep tendon, torn finger ligament, all requiring a lot of PT, ice, rest, some requiring cortisone injections, healing time 6 months to 3 years. lots of tendonitises: plantar fasciitis, achilles heel pain, hamstring tendonitis where they attach behind the knees, etc etc. pulled tendons and ligaments too. the thing that has helped the most here has been the LDN, nothing short of miraculous. still some tendon / ligament problems, but nothing torn since i started using it back in sept 2009. and if i pull a tendon or ligament or flare up the plantar fasciitis from being on my feet too much, the LDN allows things to recover within days vs months or longer. i still get the inflammation, but the LDN seems to allow my body to recover from it better. like it helps my body heal itself better or something like that.

once i learned about the spondyloarthropathies, realized that the gastritis and IBS that started in 1992/1993 is part of it as well. had those symptoms for 5 years first, then the arthritis. no doctor ever saw the connection til i started asking about spondyloarthropathy. now i have had 2 rheumatologists and a gastroenterologist that realize the link. prilosec has been my savior here. that and watching my diet (nothing too acidic, limited dairy (realize i have a food sensitivity to the casein as determined by blood work), limited caffeine). can't let my stomach get too hungry. and ginger and mint teas are wonderful. i have a big mugful of strong ginger tea every morning and since i've started doing that, my stomach has been much better. recent probiotics have helped my IBS more than anything. recent stool sample testing said i had no lactobacillus present despite daily stoneyfield yogurt. but once we realized i was sensitive to casein and had no lactobacillus, the yogurt went out and the probiotics came in.

dx history:

lots of very good, very knowledgeable orthos, PTs, physiatrists (so many partly because i've moved) had ruled out fibro and rare collagen disorder (EDS). as you know enthesitis and tender points are in the same locations. but the way it all moves around, is asymmetrical, and other than tight muscles and muscle spasms, no real muscle pain. and no trouble sleeping unless in severe pain and the pain prevents me from sleeping. had a physiatrist that specialized in fibro and then a rheumy who did research in the field and they both were very emphatic that i didn't have it. i only bring it up because its a common misdiagnosis for undiff spondy, and later a rheumy dx'ing it caused problems, which i'll get to. EDS is often suspected when one has the kind of tendon/ligament issues i've had, but i'm so NOT hypermobile that it was always quickly ruled out.

in the early 2000s, i stumped a rheumy in Virginia, though he ruled out fibro and EDS, he had no idea what was going on. my excellent physiatrist at the time explained to me how there are "over 100 different kinds of arthritis known and probably just as many without a name yet." she told me i had some kind of inflammatory arthritis, but the dx from a rheumy didn't matter to her, that she'd still treat my symptoms the same way regardless, and she did: zanaflex prescription, triggerpoint injections to my left upper back, cortisone injection to my SI. she and a PT at the time, and coming off vioxx that had been giving me edema got me back to functioning again, and renewed my interest in life. 1998-2002 were really difficult years where i really didn't care if i lived or died, i was in so much pain, and so disfunctional. prior to the physiatrist and coming off vioxx, weekly PT was the only thing saving me. that and exercising (walking and swimming when i could).

by 2003, the PT and physiatrist and lack of vioxx had me good enough that when i moved to NY state, from 2003-2006, i only needed the occasional triggerpoint injection, the occasional ultrasound. i had learned pretty well from the doctor and PT in virginia how to rehab my SI (lots of ice), manage my upper back and neck, and other -itises.

but in 2006, i flared big time: GI (gastritis and IBS). enthesitis (tore both a left ulnar ligament pouring water into the sink from a pot (cortisone, PT, ultrasound, ionophoresis, cold laser, and 2-3 years of not using that hand) and the IT/TFL attachment at the trochanter by light stretching (could barely walk for about 5 months, couldn't exercise for a year, PT toward the end), within 2 weeks of one another. and a weird rash on my legs that came and went and came and went all summer long; dermatologist was stumped, biopsy was inconclusive, in hindsight most doctors now think "autoimmune response".

that was the summer that my physiatrist fired me, saying he couldn't help me, and i needed to see a rheumatologist. the ortho who was helping me with my hand gave me the name of the best rheumy practice in town and insisted i see one of them (i couldn't get in then, couldn't get in when i tried a few years later, could only get in once i had a dx from the doctor in philly, see below).

rheumies are in very short supply here. got in to a rheumy in jan 2007 who spent about 5 minutes squeezing my knees and elbows and then declared i had fibro. and when i told him why i didn't think i had that, declared i had EDS. and when i explained how i wasn't hypermobile, wrote "patient has fibro though denies the muscle pain, fatigue, or trouble sleeping, and has EDS though not hypermobile (which of course is the hallmark of EDS). and he threw me back to my GP. unfortunately those labels stuck. the local chapter of the arthritis foundation wouldn't even help me. a very lonely time. couldn't get in to another rheumy in town for the next 15 months.

then christmas break 2007, watching "mystery diagnosis", my husband says to me, "wow, she sounds just like you." regarding a girl that was finally dx'ed with either AS or undiff spondy. watching it again, there were definitely differences, but it was what had me look up AS for the first time. found this site in jan 2008. got in to another rheumy in mar 2008 based on my physiatrist writing a letter saying i think this patient may have AS. that rheumy did the HLAB27 test which came out negative. an xray of the SI was negative. and did ESR and CRP which were both around 10, considered "within normal" (but now my docs aren't happy with that and they realize that the spondys often don't have very elevated markers). but with that, he wrote, "not enough evidence to dx with inflammatory arthritis." so he released me too. by the way he was squeezing my feet and looking at my hands, i feel like he was looking for either RA symptoms, or at least swelling. while i think its the fluid in my joints when i flare that causes the joint instabilities, misalignments, leading to muscle spasms, i don't have really severe swelling. but my chiro, PTs, physiatrists could always feel the fluid, inflammation, and taught me to some degree how to feel it too. for example the crunchy occipital muscle instead of it being taunt or the "marbly feeling" in the SI joint.

then in nov 2008, was finally able to get in to see another rheumy. the first meeting went ok. but when more blood work came back negative and a CT scan of the SI showed boney arthritic changes (osteophytes, degeneration, and such), he chalked it up to osteoarthritis. but since i have friends with osteo, i know osteo doesn't flare like my SI flares. it just didn't seem like osteo to me. he did dx me with "enthesopathy" but i never knew if he meant inflammation or not. he did say "let's not worry what its called, let's just treat it", and if he had lived up to that promise, i'd have been cool with that. he bullied me into aleve though i told him naproxen chewed up my stomach. he told me to take it with prilosec. i told him i'd been taking prilosec daily since 1993. he told me to take more. i took the aleve around christmas time and for a week or so before the edema got too bad, it was such a joy to be able to go christmas shopping, to be able to be on my feet, what a nice christmas present. but the gastritis started kicking in and the edema too, so after 2 weeks, i had to stop it. then he tried me on salsalate and then trilasate, neither of which did much except for bother my stomach. when i told him i needed something else, that's when he said there was nothing else he could do for me. when i asked him "what about ssz, the biologics, prednisone", he said they were all too dangerous. i asked him for flector patches for my SI, he gave me lidocaine patches, which were useless. i then asked my GP for the flector patches and got them, and they have been very useful. when i flared big time in 2009, i thought finally he'd help me. i was able to convince him to give me the LDN, by showing him studies of its effectiveness with crohns, its safety, and saying i'd pay for it if insurance wouldn't. was also able to convince him to give me a prednisone dosepak script for the next emergency. but i realized he was never gonna treat this thing properly. probably didn't really think i had inflammation. it was just a bad relationship. even after a major flare, i was getting minimal help, and still a very patronizing attitude.

so, in sept 2010, i flew down to philadelphia to see dr brent. i had read several of his papers on AS and undiff spondy. he seemed really knowledgeable. and then i saw that he was the first author on the webMD article on AS vs undiff spondy. so i figured he'd either be able to dx me with a spondy like i thought i had or know definitively that i didn't have it. he was so nice. within 5 minutes he dx'ed me with a spondy (the enthesitis, SI joint involvement, GI involvement, odd skin rashes, dry eyes, mouth sores, flares). then spent the next hour ruling out AS (no evidence of fusion), IBD (inflammation and "crohn's-like ulcers in the illeum, but biopsied negative for crohn's), psoriasis (a few odd skin rashes, scaley elbows, some other scaley patches, but not enough to be primarily psoriasis). came to the conclusion of undiff spondy since i have a little bit of this and a little bit of that, but not enough to be any of those three dx's. said one of the reasons he suspects it took so long and so many rheumies to dx me is that i have unusually severe enthesitis. that not many people tear there tendons and ligaments so severely, so often, from so little. and then too, flares. if i'm evaluated when not in a flare, many doctors won't realize how cyclic this can be. i also asked him if i'd write in his letter that i don't have fibro, so he wrote that there was no evidence of fibro, along with writing the dx of undiff spondy. he also wrote that he was starting me on more nsaids, but that we'd move on to ssz if the nsaids weren't enough, or even biologics if necessary.

he did more for me long distance, via email, and calling things in to the local CVS, then all those other doctors put together. tried me on mobic, then ketoprofen, then relafen, then daypro. the only one that did much was the ketoprofen, but it tore up my stomach. would have started me on ssz, but at this time (april 2011) started see dr P here in town. that was the practice i'd been trying to get into since 2006, but it took a dx from a doctor in philadelphia before i could. none of my local doctors, despite saying i had inflammatory arthritis would go to bat for me to get me in. but dr brent did.

anyway, dr P has been equally wonderful. its such a novel thing for me to have a rheumy who isn't trying to fight me, isn't trying to convince me that i don't have inflammatory arthritis, that there is no evidence of inflammation even (though i did ask one doctor what is tendonitis then? no response). like being in a series of abusive relationships and then finally finding someone who treats you like a person. though we've been taking it slowly, i'm completely on board with his approach. i've also been seeing a naturpath and she had me trying fish oil and so dr P wanted to finish out trying to do this "naturally" with supplements. he added in coQ and vit C. but none of this seemed to help much, so he was going to try the ssz. but then my liver enzymes were elevating, so we held off. have been playing with fish oil, vit C, coQ, magnesium levels. if my liver enzymes get back to normal (they are going down), then maybe ssz. otherwise, we may do humira. however, endocrine PA and naturpath both say i have adrenal fatigue (AM cortisol low, saliva cortisol throughout the day low). they wanted to put me on hydrocortisone. my rheumy said its definitely not mainstream medicine, see what my endocrinologist says, some say even low levels of any kind of cortisol is not good, but he'd be open to it. i've researched it and don't think i'll be doing it. but another way to treat the adrenal glands is with large amounts of vitamin C, vitamin E, B vitamins, so i may try that before trying ssz or humira. dr P also keeps asking me if i have any idea what is triggering my flares; since i flare really badly every august, he wonders if its allergies? that may be another route to explore. dr P has renewed my LDN, flector patches, KIP nsaid gel. its just nice to have a doctor who: 1) is there to help me 2) is open to trying a variety of things 3) is extremely knowledgeable.

it took a long time, many rheumies, but finally i'm with a rheumy who is helping me. if we can do this with the meds i'm on (LDN, zanaflex, flector patches) and supplements to treat the adrenals so that my body produces more cortisol, we'll go that route. but if we need ssz or humira, nice to know its an option. its also nice that i have a doctor that is allowing me to be part of the decision making.

and at least for now: the chiro, podiatrist, gastroenterologist, endocrinologist, naturpath are also important members of my team. while i still flare, still have to do a lot of maintenance every day, at least i have this really wonderful team of doctors that have helped me a lot and continue to help me a lot. i finally feel like i am in good hands.

My experiences are quite similar to Kancie's. A lot of thinking I just had a "bad back" or wasn't in keeping strong or limber enough, not getting enough rest, until I got uveitis (iritis) and started putting two and two together, doing internet research, and finally ended up at an AS clinic, which I think really helped give me my diagnosis of axial spondylo...something or other. There is no fusion at this point.
Best,

In my case, after acute dactylitis in toes, I went to my general practioner and requested a B27 test. She was unsure what B27 was for but allowed the testing anyway and was happy to refer me onto a rheumatologist after it came back positive.

My rheumatologist setn me for a nuclear bone scan and diagnosed arthritis. He seemed reluctant to go beyond 'arthritis' so it was left to me to attach the diagnosis 'undifferentiated spondylarthritis' to my condition.

I think it is very common for doctors to not want to attach a diagnostic name to a disease. That way they can't be wrong and the patient won't get spooked unnecessarily.

Thanks Jan (naj)

So you have a diagnosis of ankylosing spondylitis then?

Jeanna

Thanks Kancie for sharing your story and I'm glad to hear that NSD and supplements are working for you. I'm looking mostly for stories of undifferentiated spondyloarthropathy which is another member of the spondyloarthropathy umbrella that doesn't meet the criteria of ankylosing spondylitis. Sorry that your diagnosis was difficult to come by, but hope very much that things will continue to improve for you.

Jeanna

Thanks Sue. I was hoping to hear from you! I'm looking forward to having a read through again tomorrow. Late here, nursing a bad knee injury (fell walking in Wales - Grrrr)... Will likely be talking to you / seeking some guidance over the next while, if that's ok?

Hugs,
Jeanna

PS - You mention SI changes I think - has imaging always supported the diagnosis? Or did you have a period of relative negative imaging? HLAB27 negative if I remember correctly? x