Spondylitis Association of America Forums General Discussion Women Only Message Board Atypical damage/ not sure where to go from here?

Sorry this is a bit long. Female, 30 y/o.
Two years ago (aged 27) was sent to rheumy for joint pain and elevated ANA. The rest of the bloodwork was clean, X-rays and ultrasound showed nothing except some osteophytes in my hands. My rheumy said she thought this might be seronegative AS, but at the time I wasn't really complaining about my back. The pain had started in my hips, left knee, elbows and hands, but she wrote "low back pain" on all of the orders. I was annoyed by this and thought she wasn't listening to me. X-rays and bone scan showed nothing except "mild degenerative uptake," whatever that means. Keep in mind I am 28 at this time. Once we found out HLA-B27 was negative, rheumy returned to just giving me lectures about fibromyalgia and making sure I get enough sleep. I got annoyed and found a new rheum, since clearly this one seemed to think that osteophytes in the hands of someone under 30 are caused by sleep deprivation.

New rheum put me on Plaquenil for lupus, but did not fully diagnose because all I had was joint pain and abnormal ANA (you need 4 symptoms out of 11 for diagnosis). I did okay on the meds, but over the course of a year had three flare-ups requiring prednisone packs, which she said really shouldn't be happening while on this med. FF to a little over 1 month ago, my right hip starts hurting like crazy and tingling, along with pain in lower back, neck and jaw (which has always been involved in my flares), elbows, bottoms of feet/ heels, and now my right knee hurts too when previously only the left has given me problems. I insisted on a hip x-ray since previous x-rays mentioned an "area of increased density in right iliac which is non-specific but does not appear aggressive." No one seemed worried about it at the time but I'm a researcher and when you google "increased bone density" all that comes up is several types of horrible deadly bone cancer so I got freaked out.
To wrap this up, the x-rays showed that the area of increased density has not changed at all since last year and is probably a "fibro-osseous lesion." Fine. But to my surprise it also showed:
Lumbar: slight rightward curvature, no subluxation. Mild facet joint hypertrophy at L4-L5 and L5-S1. There is no spondylolysis.
Sacroiliac: Normal appearance of the SI joints. No sclerosis, ankylosis, or erosive change.

So, now I'm a bit confused. From my research, it seems facet joint hypertrophy is a result of wear and tear or a response to an injury. I am 30, have no history of spinal injury, and there is no fracture (I think that's what spondylolysis means) seen on the x-ray. Not to mention, this hypertrophy has apparently appeared only within the last year. BUT the SI joints area apparently all normal?

So here's my deal:
- Plaquenil is apparently not working as well as they think it should be, but prednisone is magic when I take it.
- One rheum suspected AS over a year ago when I really had no "classic" symptoms, but now I seem to be having pain in all of the right places. Maybe she was on to something?
- I now have bone formation which is characteristic of "wear and tear" in both my hands and spine, but am only 30.
- Lumbosacral joint is hypertrophic, but SI joints are all apparently fine. (Remember, HLA-B27 negative)
- I don't have bone cancer. Thank goodness.

What do you guys think? I haven't heard back from my rheum yet about the x-ray results but I want to be prepared, as she didn't even consider AS as something to look for on this last set of x-rays until I mentioned that my last dr. had thought that was the problem. Should I ask for an MRI of the SI joints? Did anyone else show changes in their hands and lumbar spine before SI changes? Should I just give up and do whatever she says even though I am still having flares? Since the plaquenil doesn't seem to really be working she mentioned trying Methotrexate, but that's a big scary drug to be taking when I don't even have a full diagnosis of ANYTHING yet. Should I push for more AS-related investigation or accept the lupus course?

TIA for your advice and sorry this was so long.

Basic: AS is a disease that does not comport to routine linear diagnosis which is the reason SOOO many of us have to go a circuitous route for treatment. AS is a illness of inflammation (TNF migrating into tissues, causing inflammation, pain and edema and deformity). Spondylosis is and can be a late sign.

HLA-B27 negative is a straw man in this argument. Millions have AS and are negative.

Meds: Prednisone is empiric therapy for inflammation, When it works as you describe it's decreasing inflammation. Plaquenil. Old line drug. Ineffective as you know.

Lupus? Geez Louise. Any other signs symptoms (emotional distress butterfly rash on face dry skin)

Recommendations: (drum roll) Get to a center of excellence (Mayo, Hopkins, Cleveland Clinic) and get an accurate diagnosis and go from there. Also while there have Infectious disease weigh in and do a few tests.

Make a list (onset of s/s. tests - results, blood tests, scans (disk) put it all together, and carry with you with a copy to the MD"S)

Make a list of questions. write down the answers.

Make a list of any medication which has helped not helped. Dates of taking it, dosage time of day result (pain 0-10 inflammation 0-10)

Get on your pony and go.

I agree with WhiteCell's advice.

Women often show changes in areas other than the SI joints, and are more likely to have peripheral symptoms than men.

I think it would be good to give methotrexate a trial run. It did wonders for chronic "tennis elbow" in my elbow and forearm that no medication other than prednisone had been able to touch. Methotrexate does not help axial (spinal) symptoms, but since you have a number of peripheral symptoms, it could help those. Methotrexate gets a bad rap because it is used as chemotherapy in MUCH higher doses than what is prescribed for inflammatory arthritis. We take miniscule doses once a week.

I hope you are able to find some answers soon. Keep us posted.

Thank you both for your response. I haven't heard from my rheumatologist yet, so perhaps she will be thinking the same thing and agree to do an MRI. I have never felt dismissal or condescension from her, I just wanted to know if it was even useful to pursue this at this point.

If not, I will see if we can get an appointment at Hopkins, which is what my husband wanted to do when all of this started three years ago.

Does anyone know if facet joint hypertrophy or hand osteophytes are common findings in AS, especially when it occurs in younger people?

Have you had any luck? I have a pretty similar presentation to you, and many years of baffled doctors... rheum #4 things it's a peripheral form of spondyloarthritis. Methotrexate and plaquenil have done nothing for me, bloodwork and x-rays all normal, hla-b27 negative. The deciding factors in my dx were that it's asymmetrical (unlikely to be RA) and the only thing that helps lower the pain levels is exercise -- rest makes it much worse.

Anyway, I'd be very curious to know how you're getting along now!