Spondylitis Association of America
Posted By: NorthCentralFL HLA-B27 negative - 06/07/13 07:06 PM
It is my understanding that it is very unusual to be diagnosed with AS (or spondyloarthropathy) if HLA-B27 negative. I have read some articles stating that some physicians will not even consider the diagnosis of AS if the test is negative. I suppose I am fortunate to have been diagnosed, even though it took many years of pain, and of course there was the fear of not knowing what was wrong with me.

I am curious to know how many other users of the message board are HLA-B27 negative. If you are, I would love to learn more about your story, if you feel comfortable enough to share.

Thanks smile

Posted By: Roqufort Re: HLA-B27 negative - 06/07/13 07:08 PM
My understanding is that you do NOT have to have the gene to be DXed.
someone will post the numbers,
Posted By: SouthernMoss Re: HLA-B27 negative - 06/07/13 07:38 PM
From the SAA page:

"First, hla-b27 is a perfectly normal gene found in 8% of the Caucasian population. Generally speaking, no more than 2% of people born with this gene will eventually get spondylitis.

Secondly, it is important to note that the hla-b27 test is not a diagnostic test for AS. (emphasis added) Also, the association between AS and hla-b27 varies in different ethnic and racial groups. It can be a very strong indicator in that over 95% of people in the Caucasion population who have AS test hla-b27 positive. However, only 50% of African American patients with AS possess hla-b27 , and it is close to 80% among AS patients from Mediterranean countries."

http://www.spondylitis.org/about/as_diag.aspx?PgSrch=hla-b27



The presence of HLA-B27 can help strengthen the case for an AS diagnosis, but the absence of it should not be a mark against the diagnosis.
Posted By: tntlamb Re: HLA-B27 negative - 06/07/13 07:51 PM
Funny thing happened on the way to making HLA-B27 a "requirement" they started doing more studies and found some huge varients among different populations. They discovered that about 90% of primary Caucasians with AS were positive but by the time they got to the Moroccans fewer than 40% of them were positive. It got into all this linear relationship stuff.

I know a number of folks who have an AS Dx and have never had a HLA-B27 test. you get points for a positive, but you don't get deductions if you don't. FWIW there are other things MUCH more critical. Quoting from the text below: "genome scanning has shown that the major histocompatibility complex (MHC),
including HLA-B27, contributes less than 40% to the recurrence risk ratio in AS"

I'd be awfully suspicious of any Doc who thinks HLA-B27 is a requirement. Incidentally the AS Dx is likley to go away anyway really making the water muddy.


(heres a pretty good text: http://www.vumc.nl/afdelingen-themas/41463/27797/2089686/2090082/1608664/5.pdf)
Posted By: Amers Re: HLA-B27 negative - 06/07/13 08:47 PM
I'm negative for HLA-B27. (I don't know my status for the other genes.) Thankfully, my rheumy was not phased at all by that result.
Posted By: SouthernMoss Re: HLA-B27 negative - 06/07/13 09:45 PM
Originally Posted By: tntlamb
Incidentally the AS Dx is likley to go away anyway really making the water muddy.


Not sure I follow. Can you elaborate?
Posted By: tntlamb Re: HLA-B27 negative - 06/07/13 10:12 PM
Originally Posted By: SouthernMoss
Originally Posted By: tntlamb
Incidentally the AS Dx is likley to go away anyway really making the water muddy.


Not sure I follow. Can you elaborate?


To quote Chris Miller: "All of us are trying to educate everyone we can on the latest info as well as support them, but it is a constant, fluid situation in terms of what is currently "accepted". Heck, Axial Spondyloarthritis may replace many classifications soon. That will throw everyone a new curve ball in terms of USpA, JSpA and more."

If you think about it how can it be ANKYLOSING anything without fusion and How can it be SPONDYLITIS if it involves anything but the spine?

Around the world its changing/Spondyloarthritis is a family of arthritis, of which ankylosing spondylitis is the most common member. The other members are:

-Undifferentiated spondyloarthritis
-Non-radiographic axial spondyloarthritis
-Reactive arthritis
-Arthritis associated with psoriasis (psoriatic arthritis)
-Arthritis associated with inflammatory bowel diseases (ulcerative colitis or Crohn’s disease)

In Europe Spondyloarthritis has also been classified into “axial” and “peripheral” spondyloarthritis according to whether the involvement is mainly in the spine or in the extremities and its becomingt that way more frequently in the literature.

Ankylosing spondylitis belongs to the axial class of spondyloarthritis. Many patients are diagnosed as having an axial form of undifferentiated spondyloarthritis and may subsequently develop ankylosing spondylitis. Certainly more descriptive.
Posted By: katb Re: HLA-B27 negative - 06/07/13 10:47 PM
I am also negative. Sadly I think there are still far too many doctors who give it a lot of weight judging by my own experiences and others on this forum. In addition to the HLAB27 there also still seems to be an issue with women not getting a DX because some docs still see it as a men's illness. The first rhuemy I saw about 3 years ago seemed to think both were very important. She basically told me that I couldn't have AS because I was a 38 year old woman and HLAB27 negative( even though I have a history of lower back and SIJ issues going back to my teens) and I couldn't have PsA because I wasn't having problems with my hands or feet (even though I have psoriasis). About six months later I started losing ROM in my neck and all of the reasons that I had gone to her to begin with just kept getting worse. I was a real mess by the time I got to my current rhuemy in January 2012. She is trying her best to stop any further damage and help me get my life back, God bless her. I actually cried with relief at my first appointment with her, finally someone cared and acknowledged that it wasn't all in my head. I also find it funny that she gave me a dual DX of the exact things I was told I couldn't have. She doesn't really think I actually have both but I meet the criteria for both and it keeps my treatment options open.
Posted By: Mary Beth Re: HLA-B27 negative - 06/08/13 03:16 AM
I am B27 negative and my SI joints are bilaterally fused. That second part made the diagnosis easier, though the first part made my rheumy ask me if I was super duper sure I had no rash anywhere (thinking PsA, I suppose).
Posted By: Tacitus Re: HLA-B27 negative - 06/08/13 03:27 AM
Hello, NorthCentralFL:

Over 50% of AS+B27- presenting to the AS Middlesex Clinic, actually retested B27+; the serological test is highly flawed and many people who 'think' they are negative would become positive with proper (Fc or ELISA) testing.

However, a physician using the antigen as a criterion for diagnosis is not conforming with current standards (which fact does not help those of us who have been stuck with and by time and money-wasting doctors).

Agarwal (Pittsburgh) proposed guidelines for a diagnosis of "Pre-AS;" before radiological changes appear and this includes antigen status, plus several other aspects common in AS.

When I got AS, the connection was not yet known, but it was a great help in diagnosis: Not that anybody then could tell me what to do to avoid permanent damage. In fact, the ultimate diagnosis may have done more bad than good!

HEALTH,
John


Posted By: SouthernMoss Re: HLA-B27 negative - 06/08/13 03:34 AM
Thanks tntlamb. I suppose I would fall into the "peripheral" category. I do have lower back/butt pain and my neck crackles when I turn my head, but I also have pain in my knees, wrists, elbows, various fingers, sometimes ankles and sometimes ribs. My rheumy is still refining my diagnosis - she said it's most likely AS, but it's the "female" form, referring to all the peripheral involvement and the fact that my SI joints are still open.

Posted By: NorthCentralFL Re: HLA-B27 negative - 06/08/13 12:40 PM
Good morning,

Thank you for the replies. I have had this mess since childhood (8), and it started with waking up in the middle of the night with severe leg pain. As I grew, it began to manifest in other ways; severe morning stiffness, eye inflammation, fatigue, dizzy spells w/fainting, nosebleeds, inflamed glands, etc. I began to hear the term "non-diagnostic" over and over and over, by whichever doctor my parents happened to take me to for each specific symptom. Most often things were attributed to "growing pains", allergies, or that I was making it up. I finally just stopped talking about it and tolerated the pain.

It was finally discovered at age 30 that my sacroiliac joints were fused, and now up to my L5. I have had bad episodes with my hips, knees, and ankles, with severe swelling and very high sed rates. I have arthritis with some fusing in both shoulders, with anamolous ribs where first ribs meet the clavicle, and exotosis in numerous areas. I have had peptic ulcer disease several times, pancreatitis, and an ulcerative colon, all coming back with biopsies saying "non-diagnostic". This inflammatory crud has also affected other internal organs. I work hard, exercise as much as I can, and try to eat right. It is so frustrating to have something that is so widespread in my body, so unpredictable, and also so individualized and misunderstood by the medical community. Sometimes I feel as though there is an attitude out there that says "Well, it's probably not going to kill you, and it's not contagious, so there's no reason to put much effort into finding ways to prevent it." <sigh>

Anyway, I am hla-b27 negative and female. I came to this website several years ago looking for others struggling with this goo, but when I saw how much emphasis there was on cervical fusion and the male factor, I didn't stick around. Now I am happy to see that it is much more inclusive of females and other symptoms.

I think it would be a good thing to use terminology that is more across-the-board and referring to the pain of enthesitis, fusion of the sacroiliac joints, potential for other bone growth and fusion, and the potential for other organ inflammation. These are the things we ALL seem to have in common.
Posted By: CentralGaGal Re: HLA-B27 negative - 06/08/13 01:00 PM
Having a positive result doesn't necessarily mean the diagnosis will 'stick' (in my case I was blown off from 1986 to 2010 when a Cervical MRI showed widespread damage). That most likely was a result of lack of care but also, the misconception with Women and some reports suggesting the development in the genders can differ.

A question recently asked on a Facebook forum was, "If you could go back to the time of your diagnosis, what advice would you give others?". (possible ad lib but the jest as remembered).

The ONE things I would scream and holler (okay - I'm from the South) about is be your own advocate, keep a good record of what tests or evaluations (with results/readings) have been conducted and what roads you have traveled.

Most of the doctors I had after I was diagnosed claimed to be well versed in symptoms of AS but in reflection, they appeared to be narrowly focused on the most extreme, damaged cases and several coldly denied considering AS. Very black and white attitudes. I think a lot of folks here can tell you stories of their challenges.

A few months ago I started going back and requesting the records for as far back as was available. With what was accessible, a clear pattern was evident BUT, I also found a concern flagged by the Radiologist that was never addressed.

I can't change my past but my soapbox might help another change their future. Good luck NorthCentralFL! smile
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/08/13 01:05 PM
Originally Posted By: CentralGaGal


I can't change my past but my soapbox might help another change their future. Good luck NorthCentralFL! smile



Yep! That's where I'm at too! smile

Thanks CentralGaGal!
Posted By: Lizzie749 Re: HLA-B27 negative - 06/08/13 03:31 PM
Hla-b27 negative female here too. Diagnosed with spondyloarthropathy. The rheumy said time will tell if the diagnose evolves into PsA or AS (small peripherail joint involvement would suggest PsA, but the nail and skin evidence is not sufficient at the moment).

However, when dealing with GPs in the past when the inflammation occured only in my feet and hands, the negative Hla-b27 test was used as evidence that I can't possibly have a rheumatic condition. Go figure.
Posted By: winelover Re: HLA-B27 negative - 06/09/13 07:18 AM
Originally Posted By: katb
I am also negative. Sadly I think there are still far too many doctors who give it a lot of weight judging by my own experiences and others on this forum......


sad, but true frown
Posted By: ozz Re: HLA-B27 negative - 06/09/13 07:56 AM
I am female, 50 and HLA-B27 negative.

I have suffered with back pain for 25+ years and over the past 10 yrs my GP refused to send me to a Rheumy as I am B27- Luckily for me a Sports Dr looked a bit closer into my problems, did some blood tests which showed a high CRP and referred me.

I have pain in my neck, shoulders, chest, hips, SI joints, most of back, knees, ankles, elbows and 1 toe. The Rheumy said I had SpA on my first visit, subsequent MRI and Xrays confirmed AS.

I can't tolerate the anti-inflammatories and have just started Simponi. I am waiting to feel better.

I am forever greatful to the Sports Dr, for listening and to my Rheumy who believed my story and wanted to help.

It's the second time I've proven my GP wrong (I had a massive Thyroid multi nodule goiter but for years my GP disregarded my questions as the TSH blood test was normal)

Maybe I need to find a new GP.
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/09/13 02:40 PM
I sooo know what you mean, ozz. I am 53, and having had this since childhood I can recognize the patterns from previous events.

I also have a fairly new GP, after my last one decided his sports cars and young women were so important that he only wants to work half days three days per week. It was impossible to get appointments or call backs. The one thing I did like about him was that when I did see him, he was very thorough and had no problem referring me for what I needed.

My new GP is still learning about spondylitis, and it frustrates me. I've been having bad hip pain for almost two months, then a sudden severe UTI with high fever (102), but it wasn't in my kidneys. I was nauseated, weak, and almost fainted several times. The fatigue was unbelievable. I also had abdominal pain. After he prescribed three different antibiotics, things finally calmed down, but I still have the hip pain, low grade fever, and this morning my right eye has got that old familiar "here we go again" feeling.

My GP had ordered a CT scan for suspected "chronic appendicitis" (huh?), which came back noting no abnormalities in my colon or appendix, BUT "severe degenerative arthritis in sacroiliac up to L5" (no, really? duh!) When my new GP read the report he said "Well, you do have severe arthritis in your lower spine.". It was probably good that our conversation was over the phone so that he didn't see my face. I said "Uh yeah, I've had it all my life. That is why I brought my records to you from my old rheumatologist in NC.", to which he replied "Well I've never heard of arthritis causing abdominal pain or these other problems." Argh!

Fortunately, I was scheduled for a colonoscopy screening with a new gastroenterologist, and I like him (so far). He can carry on a conversation about spondylitis. When I went for the screening and was running a low-grade temp, we casually discussed that it was from my spondylitis and not having had any nsaids in my system for several days to prepare for the screening. He seems to "get it". I go back to see him in a couple of weeks to discuss my results and options. I have found that many gastroenterologists are knowledgeable about spondylitis, and if I can't get a referral to a rheumatologist, he can hopefully help me with my autoimmune disorder needs.

Another day in the life of spondylitis! ;-) One day at a time.

.
Posted By: CentralGaGal Re: HLA-B27 negative - 06/09/13 03:07 PM
Originally Posted By: NorthCentralFL
...BUT "severe degenerative arthritis in sacroiliac up to L5" (no, really? duh!) When my new GP read the report he said "Well, you do have severe arthritis in your lower spine.". It was probably good that our conversation was over the phone so that he didn't see my face. I said "Uh yeah, I've had it all my life.

Sounds like a "Sherlock" moment....lol....I LOVE those...Knock, knock....anyone HOME???

I started with the abdominal pains around 2003. No definitive answers (some sideline findings) but thus far, still settling for IBS until told otherwise!

Posted By: NorthCentralFL Re: HLA-B27 negative - 06/09/13 03:55 PM
Yes, CentralGaGal, we get used to the "no definitive answers". smile

I realize that doctors most often become doctors because they want to cure people, and I've come to learn that we frustrate them too, especially the GPs, because so many of our symptoms individually present like something of its own and not related to an autoimmune disease. I imagine that it is concerning for them when they are always thinking about making a wrong diagnosis and the liabilities involved in that. I'm sure that getting to know a new patient and trying to discern that patient's pain threshold and emotional state is a bit tricky. The last time I was in the hospital I was grateful that my sister spoke to the attending physician and told her that I have a very high tolerance for pain, and that if I complain of pain she needs to do something to help me. I think my new GP is just surprised that I don't complain more. We spondys understand that we would have no life if we focus on our pain or what we can't do. Following the positive is what keeps us going. ;-)
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/09/13 04:08 PM
Lizzie749, you mentioned something that got my attention. Back when I was diagnosed with seronegative spondyloarthropathy in 1990, my rheumatologist also mention that time would tell what category I would fall into. She noted in her records that I have no pitting in my nails, but I have very deep, long, verticle ridges. She thought that was interesting. I have always wondered about that too, since my nails have been like that as long as I can remember.

After all these years, my spondyloarthropathy still hasn't chosen to go down one specific road. At this point, I've decided that it likes being a diverse and unpredictable traveler.


.
Posted By: Lizzie749 Re: HLA-B27 negative - 06/09/13 08:53 PM
Keeps life from getting dull, doesn't it laugh

Recently my nails showed more white irregularly at the tips. In addition, I seem to have developed these horizontal white lines under my nails, which I'm sure weren't there a year ago. I polish my nails regularly so I would know. No pitting though, and thicker nails only on the outer toes (pinkie toes? What do you call them?), which is of no diagnostical value since they take regular hits from shoes, apparently.

Not that bothered about the name of the diagnose, though. The treatment's the same.
Posted By: BeckySue Re: HLA-B27 negative - 06/10/13 02:05 AM
I too am a negative, but I was referred to my rheumy by my primary Dr., after I said that my fingers swelled up every night, and had since I was a teen. Luckily my rheumy diagnosed me on my symptoms alone. I think he calls me Seronegative Spondylarthropathy. I just had X-rays of my feet which showed a bone spur on each heel, which he said indicated that there has been inflammation there for some time. Weird, because while I have pain in plenty of other places, I've never had any heel pain. Just goes to show you how sneaky this disease is.
Posted By: katb Re: HLA-B27 negative - 06/10/13 02:49 AM
BeckySue, your story about your heels reminds me of my neck issues. The first person to mention anything about it was a chiro I had gone to b/c I was desperate for answers/help and was getting nowhere with my PCP or rhuemy. He was very thorough and did a full set of x-rays before he did anything else. He told me that I had some "straightening" of my C-spine (my neck never hurt at that time) and also noted numerous "spurs" and other issues throughout my spine that he said were unusual for someone my age. Neither my PCP or then rhuemy had really mentioned any of this. He actually tried to treat me for a few weeks but nothing he did helped. Thankfully he was very careful b/c of what he saw on the x-rays and urged me to go back to my PCP and push them to figure out what was going on. About 6-8 months after I first saw him I started getting terrible muscle spasms in my neck and within a couple of months I lost most of my ROM there. My then PCP still wasn't taking things very seriously (I had a long list of other axial symptoms as well as very high SED rate and CRP) and my then rhuemy was apparently a total quack. I had to change PCPs before I got anywhere. It's really terrible that with all of the knowledge out there we have to fight so hard to get a DX. This stuff kicks our butts enough without having to "beg" for proper treatment. mad
Posted By: seymour Re: HLA-B27 negative - 06/10/13 03:45 AM
Originally Posted By: katb
BeckySue, your story about your heels reminds me of my neck issues. The first person to mention anything about it was a chiro I had gone to b/c I was desperate for answers/help and was getting nowhere with my PCP or rhuemy. He was very thorough and did a full set of x-rays before he did anything else. He told me that I had some "straightening" of my C-spine (my neck never hurt at that time) and also noted numerous "spurs" and other issues throughout my spine that he said were unusual for someone my age. Neither my PCP or then rhuemy had really mentioned any of this. He actually tried to treat me for a few weeks but nothing he did helped. Thankfully he was very careful b/c of what he saw on the x-rays and urged me to go back to my PCP and push them to figure out what was going on. About 6-8 months after I first saw him I started getting terrible muscle spasms in my neck and within a couple of months I lost most of my ROM there. My then PCP still wasn't taking things very seriously (I had a long list of other axial symptoms as well as very high SED rate and CRP) and my then rhuemy was apparently a total quack. I had to change PCPs before I got anywhere. It's really terrible that with all of the knowledge out there we have to fight so hard to get a DX. This stuff kicks our butts enough without having to "beg" for proper treatment. mad


Same here. I had lost more than half my neck ROM on each side, my toes were swelled up, my fingers hurt like hell, my CRP was up the roof but my PCP still blamed "stress". lol...

She said there was nothing wrong with my spine on x-rays so it wasn't any arthritic condition.

At least she finally refered me to a rheumatologist who thank god diagnosed me with AS on the first visit and is actually a very good and involved doctor. Thank God for that.

And even better, Enbrel's Enliven program actually gave me the anti-tnf for free for 6 months until the insurance stuff was ready. And every time there's any sort of delay or problem they make all the calls for me and send me free Enbrel until things are OK again. Frankly I have nothing but praise for their staff.

But my PCP sucks. Thank God I barely ever see her again now. It's been like 2 years... The treatment my rheumy gave me, which is Enbrel + Voltaren when needed gave me a lot of quality of life back. My neck is still stiff on the right side but I gained back some ROM on all other movements, my feet barely hurt anymore, my fingers are OK, etc.

katb how is your neck now?
Posted By: avonldy Re: HLA-B27 negative - 06/11/13 11:37 AM
I am also Hla-b27 negative. I didn't get a Dx until I was in my late 60's. I had one Rheumy say that I had the symptoms of AS, but I couldn't have it because I was Hla-b27 negative, female and old. He said that people with As were Hla-b27 positive, male and in their 20's. My GP and my present Rheumy pay no attention to Hla-b27, but pay a lot of attention to my high SED rate.
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 12:01 PM
Wow avonldy, you have really been through it! I am glad I started this thread. Being new to this message board, this thread has helped me to understand how many others there are out there like me.

I am fortunate that I have not yet had any joints replaced, but I've been having a lot of pain in my right hip for a few months now. It's scary to me. I am so sorry you have had to endure so much without knowing what was wrong for so many years. Isn't it maddening!

.
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 12:19 PM
I'm HLA-B27 positive (but what does it matter since the weight of it is not that strong) but, the more I read about mis-diagnoses (or total void of any), the more I shake my head. In reflection it seems the doctors I've encountered were avoiding the consideration of AS like it was the plague! I don't get it. Is there something to gain for them?

As early as three years ago, I had a well thought of Doctor say he seriously doubted I had it but within weeks I had an MRI that defined my cervical as, "pretty well covered with AS" (per the Radiologist's comment to me). I just don't understand what's in it for them to be so resistant, especially if you were already diagnosed.

For anyone new to AS, I HIGHLY recommend you document as much as possible and keep a file because it seems resistance of keeping the label will be challenged during your journey.
Posted By: Anonymous Re: HLA-B27 negative - 06/11/13 12:55 PM
I'm B27 negative as well. Essentially diagnosed within a month of seeing my current rheumatologist after a severe three to four month event. Female, just turned 49 at the time. It took another several months of aggressive steroids to return me to my feet. I've only just stopped prednisolone after 30 months on the stuff.

My case has been reviewed by the head of rheumatology at St Vincent's as well as by an emeritus rheumatologist contracted by my insurance company for professional disability. Annoyingly, they both confirmed the DX.

Good and bad luck wrapped in the same package.
Posted By: JenInCincy Re: HLA-B27 negative - 06/11/13 01:43 PM
Originally Posted By: Lizzie749
I seem to have developed these horizontal white lines under my nails, which I'm sure weren't there a year ago.

By "horizontal" do you mean from one side of the nail bed to the other? Horizontal ridges can definitely be part of the clinical picture of psoriasis/PsA. Horizontal ridges can also be something called Beau's lines, which can occur after injury or serious illness. A quick search turned up this page which describes white horizontal lines (not ridges) as "Muehrcke's nails" which "are usually seen when blood protein levels are low." (Disclaimer: even though it is "Yahoo voices" it is written by an MD though who knows if it's truly accurate...)

http://voices.yahoo.com/what-causes-white-fingernail-lines-6214686.html?cat=69

Originally Posted By: NorthCentralFL
I have no pitting in my nails, but I have very deep, long, verticle ridges.

Vertical ridges (cuticle to nail tip) are common & benign, and aren't an SpA symptom: http://www.mayoclinic.com/health/nails/AN00591

Good source of general info on various nail abnormalities:
http://www.nlm.nih.gov/medlineplus/ency/article/003247.htm

Originally Posted By: NorthCentralFL
After all these years, my spondyloarthropathy still hasn't chosen to go down one specific road. At this point, I've decided that it likes being a diverse and unpredictable traveler.

SpA doesn't need a "path." Knowing it's SpA and treating it as such is sufficient. As Lizzie & others have said, obtaining a more granular diagnosis will have minimal impact on your treatment options (except from an insurance payment perspective, for some.)

Originally Posted By: CentralGaGal
the more I read about mis-diagnoses (or total void of any), the more I shake my head. In reflection it seems the doctors I've encountered were avoiding the consideration of AS like it was the plague!

Part of the problem is the persistent use of the term "AS" which makes SpA diagnosis even harder for those of us who do not meet the modified NY criteria but still have other signs/symptoms/history that fit the SpA picture and nothing else. My own rheumy never uses terms like spondylitis, spondyloarthropathy, SpA, undiff spondy, etc. He has ONLY referenced AS and so he seems to be quite puzzled over what is wrong with me since I obviously don't have RA and do not meet the AS criteria.

At my annual visit yesterday he even "demoted" my diagnosis code from "unspecified inflammatory spondylopathy" to "back pain." I must admit that I feel insulted by this. It's not that he doesn't believe me - I know that he does. I've seen him for years and my complaints (pain location and level) are very consistent. Plus he doesn't prescribe me any opioids or other drugs that could be abused (I have a pain doc for that) so he knows I'm not a drug seeker. He even let me try 3 different anti-TNFs though he was dubious they'd help (of course, when they didn't, that did not help my cause with him, either.) He also knows I have dutifully gone to PT when he suggested it, and a 4 week steroid taper took away ALL my pain. AND I am going back next week to see him to discuss a plan for trying all the stuff that is left (immunomodulators like 6-MP, Plaquenil, MTX) in the hope that maybe something - or some combination of things - will work for me.

So I know he wants to help me, which makes his stubborn refusal to concede I am afflicted by SpA and nothing else all the more hurtful - and personal.
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 02:21 PM
I only wish my nails looked as good as the one in the photo on that site about the nail ridges. Here is a photo of my left ring finger. It won't grow any further than this without splitting right down the middle. My nails have always been severely ridged, which is why I think my diagnosing rheumatologist noted it.

Trying to upload the photo...
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 02:22 PM
Originally Posted By: JenInCincy
So I know he wants to help me, which makes his stubborn refusal to concede I am afflicted by SpA and nothing else all the more hurtful - and personal.

I DO understand the 'personal' comment..hence my harping that people need to be their own advocate because after being told over and over I don't have it, I walked away (and even the one doctor that felt my getting aggravated was a sign I needed to be put on anxiety meds [never filled the prescription after I found out what it was]), but heck yeah, after a while, it gets old hearing it, having the Rad reports (but them refusing to look at them), etc.

If it were a choice and I knew then what I know now, I would have challenged them with the backing I have (now).

I think still, there is a lack of broad knowledge of AS in the medical community and a person versed in it should be the only one able to proclaim or deny it (like I didn't know the sweats or the eyes or the enthesitis, etc. were symptomatic of AS).

Anyway - hugs Jen as I know that is a real bubble blower (and mental set back).
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 02:24 PM
Looks like you have to have a GMail account to see it frown
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 02:32 PM
Trouble with the photo link. frown I'll come back to it later.
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 04:30 PM
Okay, I think I figured out how to post from photobucket.

http://i1319.photobucket.com/albums/t662/Cathy_Tyrrell/IMG00389-20130611-1210_zps3ee94888.jpg
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 04:32 PM
I did get through and see the photo. It's a little hazy but from that I can tell, it looks like vertical nail ridges which are fairly common. Look at the link and let me know if this is what yours looks like.

http://www.mayoclinic.com/health/medical/IM01720

(thanks for the link who ever posted it smile )
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 04:37 PM
I don't think they look alike at all. Each of the wide white lines on my ring finger nail are raised very high, with the dark lines being deeply indented.

I suppose you'd have to see and feel them in person to understand what I mean. I get comments on them constantly. frown
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 04:40 PM
Have you tried Vitamin E? (a brush on).

http://healthyeating.sfgate.com/vitamin-deficiencies-cause-fingernail-ridges-3123.html
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 04:52 PM
Oh yes, I have tried many things over the years. I have been told that it is systemic. When it comes to a healthy diet and proper nutrients, I've been all about that, since I realized a long time ago that it is one of the best ways to manage my AS.

Here is another odd feature of my systemic disorder. I had a tremendous amount of extra bone growth throughout my body during my most severe flare period at age 30. I used to have a cute gap between my top two front teeth, which closed due to all of the bone growth just above and to each side of them. This is a stock photo, NOT me. smile

http://www.istockphoto.com/stock-photo-11670592-buccal-exostosis.php

Then, in 2009, I had a CT scan of my chest and learned that I have a lot of new bone growth bilaterally off of my first ribs.

It's all just pure weirdness. Not much surprises me anymore.
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 05:02 PM
Agreed that nothing is surprising anymore.....lol
Posted By: JenInCincy Re: HLA-B27 negative - 06/11/13 05:37 PM
Originally Posted By: NorthCentralFL
I suppose you'd have to see and feel them in person to understand what I mean. I get comments on them constantly. frown

Maybe it would be worth seeing a dermatologist?
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 06:43 PM
Here is an excellent link discussing nail problems:

http://www.acponline.org/about_acp/chapters/mt/hit_the_nail.pdf

I have never been diagnosed with lichen planus, but my nails look similar to those photos. Lichen planus is an autoimmune inflammatory disorder. Well, that certainly sounds like it's in the same ballpark, right?

.
Posted By: Lizzie749 Re: HLA-B27 negative - 06/11/13 07:38 PM
Re: nails, I don't have any ridges but just lines under the nails. By horizontal I mean that they go across the nails. Since my rheumy took a good look at them and wasn't that interested or worried about them, I'm not either. I did talk to a friend who's psoriatic and she said her nails have similar lines, so that's why I thought they might be an early sign of that. Or not, hopefully... sometimes I joke that the health is gone but at least I've still got my looks wink
Posted By: CentralGaGal Re: HLA-B27 negative - 06/11/13 07:48 PM
WOW! Great link! I actually had a condition with my large left toe (same bad foot) that has taken three years to cure. It is still sensitive to pressure (even socks) but the condition of ridges and splitting has finally gotten healthier!
Posted By: JenInCincy Re: HLA-B27 negative - 06/11/13 08:00 PM
Originally Posted By: Lizzie749
sometimes I joke that the health is gone but at least I've still got my looks wink

LOL, love it!!!
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/11/13 08:09 PM
Originally Posted By: Lizzie749
... sometimes I joke that the health is gone but at least I've still got my looks wink



LOL! Yep, and we are unique too! wink
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/12/13 02:22 PM
Originally Posted By: Tacitus

Over 50% of AS+B27- presenting to the AS Middlesex Clinic, actually retested B27+; the serological test is highly flawed and many people who 'think' they are negative would become positive with proper (Fc or ELISA) testing.


Hi John,

Sorry that I missed this post! It is very informative. I was not aware of the flaws in the serological test. Sometimes I think about pursuing the best possible rheumatologist again to see if they will re-examine all of my symptoms, and maybe do more genetic testing, but then I realize that they wouldn't be able to treat my disorder anymore effectively regardless of what they found. I doubt that I am a good candidate for the new biologics because I can be prone to infection. However, the underlying mystery of this disorder does make one wonder about the specifics. I sure do wish they would put more money into research.

Thanks again John. Have a great day! smile

~ Cathy
Posted By: Soccerdocmom Re: HLA-B27 negative - 06/16/13 02:14 AM
My daughter was the first diagnosed in her early 20s thanks to a sharp eye doc (multiple bouts of iritis since childhood) who sent her to the best rheumy at our teaching hospital. She was HLA-B27 negative. When this rheumy started seeing the rest of us, he said there was really no need to test the rest of us as she was negative; he felt we fell into the pool of folks who were negative on this test, but a quick look at our x-rays and MRIs told the real story. We've even had our blood work indicate no inflammation, even while LOOKING at a measurably swollen joint. My son's rheumy used to "love" to pull blood from him whenever he was healing from something broken...she claimed the boy had alien blood since he never (nor any of us) shows numbers outside the normal range.
Posted By: BeckySue Re: HLA-B27 negative - 06/17/13 10:44 PM
"Here is another odd feature of my systemic disorder. I had a tremendous amount of extra bone growth throughout my body during my most severe flare period at age 30. I used to have a cute gap between my top two front teeth, which closed due to all of the bone growth just above and to each side of them. "
NorthCentralFl -

I have a strange collarbone, where the right half is visibly much bigger than the left side. This came on slowly, but I know it wasn't this way in my teens, as I have photos showing the sides completely matching back then. My rheumy actually noticed it before I did. Since it doesn't seem to cause me any problems ( other than my necklaces don't hang evenly ) I pretty much ignore it. Last year, I noticed that a bony bump had developed on the end of the left collarbone. When the dr. X-rayed it, he asked me when I had I broken that left side? I said "never", and then he showed me the healed crack on the X-ray. So I too have some strange bone growth going on that has no explanation. As long as it doesn't hurt, I can just accept that it's another weird and wonderful symptom of our dear disease.
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/18/13 01:36 AM
Originally Posted By: BeckySue
So I too have some strange bone growth going on that has no explanation. As long as it doesn't hurt, I can just accept that it's another weird and wonderful symptom of our dear disease.


Yes, my anomalous first rib bone growth is on the left too. Very interesting.
Posted By: RAHMBA Re: HLA-B27 negative - 06/18/13 05:03 PM
I'm HLA-B27 negative. Diagnosed over 20 years ago without the genetic test. I asked for the test when I had children. northcentralfl, what kind of story did you want to know?
Posted By: seymour Re: HLA-B27 negative - 06/19/13 03:08 AM
I read various times that being HLA-B27 negatives makes us less likely to have extensive fusion. Even my rheumy said that and I believe studies seem to point in the same direction.

Pain and stiffness though can be just as serious.
Posted By: NorthCentralFL Re: HLA-B27 negative - 06/19/13 11:50 AM
Seymour,

That seems to make sense to me too. And now with my latest "stuff", I have to wonder if being negative can make us more prone to inflammation in other organs. Right now I am waiting to find out if my liver will heal, or if I might have autoimmune hepatitis (see the "erythema nodosum" thread).

.
Posted By: TeresaS Re: HLA-B27 negative - 11/23/15 04:14 AM
Uggg I'm so upset and don't know what to do. I've been treated for ankylosing spondylitis for about 5 years now in Florida. I had to move to Missouri so I thought OK I'll just find a rheumatologist as fast as I can and no interruption in treatment will occur. Boy was I wrong I'm HLA-B27 negotive and my inflation blood tests were normal. The rheumatologist was so rude and wouldn't even consider my symptoms. He told me under no circumstances with you being a Caucasian woman with a negative HLA-B27 do you have AS and had no idea why anyone would put me on enbril or give me pain meds. I just broke down in tears right there and he walked out of the room saying there is nothing I can do for you. There are days I can't even walk across the damn floor or stand to make dinner for longer than 10 minutes. I can't even turn my head very far anymore. (Sounds like gravel in my neck) I have to have people open bottles for me some days because my fingers barely work. I've been wearing dresses lately because I can't bend to put pants on and I wear slip on shoes. I've been taking a lot of Tylenol because I can't take the ibuprofen because that messes up my ulcerative colitis. I've been crying a lot now because I'm so scared I'm going to get worse because no one here believes me. I can't move back to Florida but I sure wish I could. cry
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