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#197136 - 02/08/11 12:37 AM USpA
Aim Offline
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Registered: 02/07/11
Posts: 177
Hi, I'm a 40 year old wife and mother who has finally been diagnosed with Undifferentiated Spondyloarthropathy after over 20 years of being ill. I started having rib pain in my late teens which was eventually diagnosed as costochondritis but the doctors at the time had no idea why I had so much inflammation in my lower rib cage. Cortisone injections improved it for a while and after 5 years, the inflammation settled done. Then, in my 20s, I was told I had fibromyalgia due to pain in various areas, which I now understand was also most likely due to enthesitis.

Long story short, I had an injury recently from falling on my rump that flared up sacroiliac joint pain really bad. I had suffered from this for years and just contributed it to fibro, along with neck, foot and hand pain, plantar fasciitis and carpal tunnel syndrome, to name a few of my issues and diagnoses. I finally found a rheumatologist who gave me the time and listened to my 20+ years of symptoms. She said it's USpA and needs to be treated. I've been put on indocin, which has been adding to stomach issues and bleeding. I've been checked for colitis, Crohn's, etc., but nothing other than an anal fissure and some minor hemorrhoids were found. I'm told my stomach problems are due to IBS, although they seem to improve if I don't take any NSAIDs. My new rheumy doesn't want to put me on anything stronger yet seeing I'm still undifferentiated (no SI joint deterioration on X-ray, MRI has been ordered). I'm wondering if IBS is commonly seen in patients with USpA?

Most male doctors I've seen want to immediately contribute all my problems to fibromyalgia, but this female rheumatologist says I may or may not have ever had FMS and that it could have been that it was mistaken for enthesitis all these years. Has anyone else been misdiagnosed in such a way? Does it seem like most people given the diagnosis of USpA stay undifferentiated or am I most likely in the early stages of AS, even though I've at least had enthesitis symptoms for over 20 years? I have a cousin with AS and am wondering if I just haven't been diagnosed with it yet because I'm a woman?

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#197148 - 02/08/11 06:01 AM Re: USpA [Re: Aim]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13278
Loc: Cincinnati, OH
Hi Aim, welcome! Sorry to hear of your recent flare-up.

IBS is not particularly linked to spondylitis. It is however linked to fibro. Often people with an inflammatory condition like spondylitis will have fibro as a secondary diagnosis. Of course it's possible that you have both spondy and IBS, and that they are unrelated. IBS is fairly common as you probably know (unfortunately.)

Unfortunately, misdiagnosis of spondylitis for fibro is also very common - especially in women. The first rheumy I saw told me I had fibro. I did my homework and I knew she was wrong so I fired her... I've had to see four different rheumies before finding one who was willing to take me seriously!

Indomethacin is known for being a stomach-ripper-upper. Considering your GI symptoms improve when you are off the indo, you need to talk to your rheumy about this ASAP. I've gone through this with two different NSAIDs - the answer was to go off the NSAID to let the GI tract heal, maybe adding a 2 week course of a proton-pump inhibitor, and then to start a new NSAID. There are several that are gentler on the stomach. Indo is an old stand-by NSAID (it was the first non-aspirin NSAID!) but it is not "better" or "stronger" than the other NSAIDs - just different.

I'm interested to hear that your doc has diagnosed you with undiff spondy even though your x-ray was normal and you don't have MRI evidence yet. I have normal looking x-rays and MRI so my doctor is reluctant to diagnose me with spondylitis although EVERYTHING points to it - very irritating!

The experts in the field are leaning away from the distinct "undiff spondy" and "AS" labels and more towards a spectrum of disease - simply "axial spondylitis." Folks without x-ray evidence of inflammation, but who have MRI evidence and other symptoms, are referred to as "preradiographic AS." Nobody can say whether any one person will progress to fusion or "full blown AS." Only time will tell. It isn't clear whether undiff spondy is "early AS" or simply a milder form of the disease spondylitis. The experts tend to think that in some people, yes, a diagnose of undiff will change to AS as the disease progresses; but in other people the disease will always remain mild.

You may want to cross-post this in the main forum - it gets a lot more traffic! Again, welcome smile
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#197151 - 02/08/11 06:34 AM Re: USpA [Re: JenInCincy]
seekonk Offline
Registered Visitor

Registered: 12/06/10
Posts: 1254
Originally Posted By: JenInCincy
Folks without x-ray evidence of inflammation, but who have MRI evidence and other symptoms, are referred to as "preradiographic AS."


I am not sure MRI evidence is necessary for a diagnosis. In fact, AFAIK MRI is not a necessary part of any of the formal diagnostic guidelines that I have seen.

For example, only a third of patients with inflammatory back pain will have a positive SI MRI in early disease (< 2 years, search Medscape for the full article below) and although in later AS presumably the fraction will increase, it is still only around 50% (according to my memory of another source I cannot remember now).

Apart from this, radiologists have on average a 20-30% error rate in detection of pathologies, and I have a feeling that most radiologists are seldom asked to assess the small and subtle signs of SI inflammation in early AS and will be quite likely to miss them.

Quote:
Magnetic Resonance Imaging Changes of Sacroiliac Joints in Patients With Recent-onset Inflammatory Back Pain: Inter-reader Reliability and Prevalence of Abnormalities

Liesbeth Heuft-Dorenbosch; René Weijers; Robert Landewé; Sjef van der Linden; Désirée van der Heijde



Edited by seekonk (02/08/11 06:37 AM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#197159 - 02/08/11 07:23 AM Re: USpA [Re: seekonk]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13278
Loc: Cincinnati, OH
Originally Posted By: seekonk
I am not sure MRI evidence is necessary for a diagnosis. In fact, AFAIK MRI is not a necessary part of any of the formal diagnostic guidelines that I have seen.


Yes, but if you have no MRI or x-ray evidence the diagnostic bar is higher - including you must be B27+. This article summarizes the recent suggested update for diagnosis of axial spondylitis (free to access.)

http://www.sciencedirect.com/science?_ob=MImg&_imagekey=B6WBJ-51BBFBG-4-7&_cdi=6712&_user=2505525&_pii=S1521694210000483&_origin=browse&_zone=rslt_list_item&_coverDate=10%2F31%2F2010&_sk=999759994&wchp=dGLzVzz-zSkzS&md5=ffd8f3b4d8bae55bba337d38728ace65&ie=/sdarticle.pdf

The diagnostic algorithm currently endorsed by ESSG and ASAS is:

*Back pain > 3 months
*Age at onset < 45
AND one of the following:
*Sacroiliitis on imaging (active inflammation on MRI or definite sacroiliitis on x-ray, according to modified New York criteria) PLUS >1 SpA feature (listed below)
OR
*HLA-B27+ PLUS >2 SpA features

**SpA features:
• Inflammatory back pain
• Arthritis
• Enthesitis (heel)
• Uveitis
• Dactylitis
• Psoriasis
• Crohn‘s disease / ulcerative colitis
• Good response to NSAIDs
• Family history for SpA
• HLA-B27
• Elevated CRP

This model is not perfect, of course. This note follows the table listing the above criteria:
"Sensitivity 82.9%, specificity 84.4%; n=649 patients with chronic back pain and age at onset <45 yrs.
"Imaging arm (sacroiliitis) alone has a sensitivity of 66.2% and a specificity of 97.3%."

Sensitivity means how many true positives are identified. IOW, a negative result of a test with 100% sensitivity definitively rules out the diagnosis.

Specificity means how many true negatives are identified. IOW, a positive result of a test with 100% specificity definitively confirms the diagnosis.

So for the above discussion, the very high specificity of the imaging criterion means that if you have a MRI or x-ray that is positive for inflammation you almost certainly have spondylitis. On the other hand, the 66% sensitivity of the imaging criterion means that 1/3 of people who do have spondylitis are not identified as such because there is no evidence of inflammation on MRI or x-ray.

Folks like us.

Most doctors are exceedingly reluctant to part with the imaging portion of the diagnostic algorithm which is why I asked the question. I wasn't trying to challenge your diagnosis, Aim. I was just impressed that you got it smile
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#197196 - 02/08/11 10:10 AM Re: USpA [Re: JenInCincy]
Aim Offline
Registered Visitor

Registered: 02/07/11
Posts: 177
Thanks for all the info. I don't have radiographic signs yet and most likely aren't HLA-B27 positive. I was supposedly tested a long time ago, but the test was just redone, just in case. No results yet. The rheumatologist diagnosed USpA based on the overwhelming evidence of enthesitis and lower inflammatory back pain, combined with family history. My grandmother and aunt appear to have the same thing I do and my cousin has AS.

As for the enthesitis, I have been dealing with that for years, and unfortunately, it went unrecognized all this time. Most recently I had a terrible flare up in my heel that sent me to a podiatrist for the first time. This was months ago, prior to the USpA diagnosis. The podiatrist didn't know what was going on, for he said it wasn't typical plantar fasciitis. He couldn't understand why I had tendonitis in my foot so bad. I also have a swollen lump on the inside of my arch by the heel right above the painful area. It's been determined now that a lipoma developed most likely due to years of damage and scar tissue build-up. The treatments the foot doctor gave me over several months weren't very effective and potentially more harmful than if I had not seen him at all. So I'm hoping now the problem will be treated correctly.

Anyway, it seems that for years I've had just one problem at a time for the most part and it wasn't till recently that all kinds of signs appeared at the same time. That's when the puzzle pieces started falling together.

The rheumy I saw said that all the signs point to a spondyloarthropathy and that maybe some day I'll be diagnosed with one of the specific types. For instance, a past rheumy was convinced I had psoriatic arthritis, but when rashes I have a lot couldn't be linked to psoriasis, she gave up on that diagnosis. She told me way back then that she new I had some type of spondyloarthritis, but she didn't know which kind. I thought that meant she was clueless, so I didn't go back to her. Now this new rheumy is saying that I don't have to have one of the specific kinds to have spondyloarthropathy and that I definitely need to be treated for it. She said if an upcoming MRI of my sacroiliac joints shows inflammation, then my diagnosis will be changed to AS. So, I was under the impression that you don't need proof in the SI joints to be diagnosed with USpA. Is that right?

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#197199 - 02/08/11 10:31 AM Re: USpA [Re: Aim]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13278
Loc: Cincinnati, OH
Originally Posted By: Aim
I was under the impression that you don't need proof in the SI joints to be diagnosed with USpA. Is that right?


Right, according to the most current algorithm that I posted above, if your imaging is all normal and you are B27+ and have at least 2 other spondy symptoms, you fit the diagnostic criteria for axial spondylitis (they are phasing out the terms AS and undiff spondy in the latest research.)

But again ... the experts who published and support the diagnostic guideline even acknowledge it is not going to catch 100% of people with spondylitis.

Glad you found a rheumy who is such a good problem-solver!! I'm glad your run-around has ended and hope the treatment she offers helps you soon. Basically the MRI is moot at this point - as the doc said, you seem to have clear evidence of spondylitis. The treatment options are the same whether she winds up labeling it as AS or not.

Interesting about your rash. I have one like that, too.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#197201 - 02/08/11 10:42 AM Re: USpA [Re: JenInCincy]
seekonk Offline
Registered Visitor

Registered: 12/06/10
Posts: 1254
It sounds like you have a great rheumatologist, Aim. In which city/state do you live (in case it is close to me)? smile

How did the rehumatologist identify enthesitis? Physical exam? I am curious how they do this (since I suspect I have some at various spots, including some really sensitive spots in the lower ribs and in the shoulder and scapula).


Edited by seekonk (02/08/11 10:44 AM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#197207 - 02/08/11 11:01 AM Re: USpA [Re: JenInCincy]
Aim Offline
Registered Visitor

Registered: 02/07/11
Posts: 177
Yeah, I'm hoping it's all been figured out now, though never know. The doctor could tell me something different when I see her at the end of the week. I've dealt with uncertainty for so long, I wouldn't be surprised.

One rash I used to get a lot seems to be allergic contact dermatitis, as per a dermatologist I've seen for years. I seem to be mostly affected by dark blue elastic. Clothes with blue dye bother me if it's tight on my skin. A clue to this was that every time I'd wear a dark blue dress made of stretchy elastic material, I'd break out. One time I wore it to an outside gathering which was very hot. I sweat and very soon I had blotches all over, especially near the edges of the dress.

Another type of rash I get seems to be under skin folds, such as under my arms. It kind of resembles inverse psoriasis, thus the possible PsA diagnosis at one point. But seeing it comes and goes, it's never been observed by a specialist. I've just lived with these rashes all these years, thinking I'm just more susceptible to weird problems.

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#197216 - 02/08/11 11:16 AM Re: USpA [Re: seekonk]
Aim Offline
Registered Visitor

Registered: 02/07/11
Posts: 177
I live in northern New Jersey. This new rheumy is a young woman who really knows her stuff. I've been to several specialists and rheumies and she gave me probably the most thorough exam I've ever had. I'm not sure if it's OK for me to give out her name on these boards, so if you want, you can e-mail me and I'll send you her name.

The areas I have inflammation are common sites of enthesitis - the heel (plantar fascia area), rib cage around cartilage, up and down my spine, joints of hands and feet. I don't know if it shows up on any tests, but I have a feeling it doesn't and that's why I've been misdiagnosed for all these years. Areas around where I have inflammation are very tender and sore, which was for a long time blamed on fibromylgia tender points. Though, as I wondered myself and my new rheumy confirmed, FMS doesn't involve inflammation. When something is visibly swollen, in particular, there has to be another explanation, such as possible enthesitis. However, it can take years for sites to be visibly swollen, so I guess the tip off is where the pain is - on the outside of the joint vs. the inside, for instance. That's my take on it.

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#197238 - 02/08/11 02:24 PM Re: USpA [Re: Aim]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13278
Loc: Cincinnati, OH
We have a whole forum where people can recommend (or pan!) their doctors! So you should definitely hop on over there and shout out about your doc smile

You're totally right about your pain being inflammatory versus a fibro type of pain.... good detective work!
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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