Told to STOP all AS meds, what would you do??

Bones, joints and muscles
1

I've recently been referred to Mayo again, because of Near Syncope Bradycardia. My Rheumatologist was concerned about my fatigue, shortness of breath, sweating, pale color... not my usual self, sent us to the local ER. My heartrate kept falling into the 40's; which is not my normal. I was hospitalized for 4 days & then referred back to Mayo for evaluation of my Electrical system of my heart.

Once at Mayo, they screen you for all symptoms & when I said I was having bad back pain, they sent me back to the Mayo Rheumatologist I had met last year. The Rheumatologist then told us that I did not have AS, I have Fibromyalgia & the pain is from "Pain Patterns of Thinking".

She says that even though I'm HLA-B27 + & have symptoms, I do not have damage on MRI from last year, therefore do not have AS & need to stop my Plaquenil, Methotrexate & Cimzia. I also need to stop using my heating pad. If I begin to have damage on my MRI, then I can go back on tx.

I was shocked, how could this pain be all in my head? It wakes me & my husband up all night with my moaning & movement. (I have pain & stiffness in my back if I stay in any position too long right now.)

When I originally went to Mayo, I was on long-term Prednisone & had just been diagnoised with AS from my local Rheumatologist. The Prednisone gave me horrible anxiety, but relived my joint pain & inflammation. My local doc started the medication regimen & I started seeing results in months.

I was able to wean off Prednisone & could finally turn my neck in my car while driving, without pain or limited range of motion. My heel/foot pain/stiffness also has disappeared since starting tx & my morning stiffness has decreased dramatically. I've done fantastic, until the past month starting with extreme fatigue, back/butt/hip pain & this new heart issue.

Also, I cannot take otc or rx pain medicine, due to stomach ulcers, so I rely on my heating pad, movement, stretching, deep breathing & massage to manage pain, along with my tx.

My spouse & I are so confused & terrified of the debilitating foot, neck pain, stiffness & limited range of motion returning, but more about irreversible damage that could happen by stopping tx.

My lastest Chest xray report from Mayo came in today & thankfully my heart & lungs look good, but it stated I have spinal bone spurs (Osteophyle Formations) on the xray. I'm not sure if that answers my recent back pain issues or is a sign of AS? Any advice would be so appreciated!

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Mayo is a specialty hospital in the US. My main question is would you stop the treatment to see if fusing occurs & shows up on MRI? I don't want to be on medications I do not need, but also do not want permanent damage or lose my range of motion. Thank you for any advice.

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Hi Aphra,

​   Osteophyte formation is a very common result of normal degeneration in the spine.  Bones react to any source of inflammation by adding new bone.  It's like scar tissue on bone.  The older you get the more of this you will see.  By itself an osteophyte does not cause pain.  Only when it builds up in an area of the spine where it presses on a nerve can it cause a problem.  So, unless you are having nerve pain from an osteophyte it would not be the source of your pain.  And if it were the source of your pain it would be a referred pain like sciatica and not just local back pain. 

​And unfortunately you ran into the very common confusion about AS.  She is technically correct.  Without imaging evidence you really can't get a diagnosis of AS.  By definition AS needs to have MRI or x-ray evidence of the ankylosing process.  Ankylosing refers to the process which ultimately leads to fusing of the bones of the spine.  The problem in her diagnosis is that just because you do not have AS (at least not yet) doesn't mean that you don't have anything.  Please do some internet reading on a topic called axial spondyloarthropathy.   This is a general term for a family of inflammatory illnesses that includes AS but also includes psoriatic arthritis and something called undifferentiated spondyloarthritis.  You can have all the symptoms of AS including being HLA-B27 positive, a long history of back pain, a family history of similar problems etc. etc. but not the MRI evidence of fusing.  You shouldn't be diagnosed with AS but you should be diagnosed with axial spondyloarthropathy.  The pain is the same.  The stiffness is the same.  The inflammation is the same and the treatment should be the same.  There is also a line of thought that the fusing may not occur until later but  may still happen.  But the point is that you still have an autoimmune disease causing inflammation and stiffness of the spine and SI joints and it needs to be treated aggressively.   If you still have access to that Mayo rheumatologist you may want to ask her why she is not calling it axial spondyloarthropathy.  But its always better to do your own research before talking to your doctor. 

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I agree with Peter, if your MRIs are fine you do not fit criteria for AS, but you would fit the criteria for axial spondylarthropathy. Treatments are generally the same. Is you back pain improved by activity, and aggravated by rest, if so then this shows you have an inflammatory back pain and not mechanical. Also osteophytes alone will not cause pain unless they are pressing or irritating a nerve in your spine, this wouldn't give an ache but more of a nerve pain, like a shooting pain.

The HBLA27 itself is not diagnostic, 10% of the population carry this gene, but only a very small proportion of them go on to have a spondylarthropathy. I feel your frustration I was wrongly diagnosed and had a lot of fusion when they eventually found it. As Peter says do your research, then ask questions. Don't just accept their answers ask why? Also Drs are not great fans of google in general, so source your research from government sites, medical journals and charities which focus on the condition. Here in the U.K, we have NASS which is very informative and has a helpline who could offer advice, I'm sure you will have similar in the U.S.

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The history of AS is pretty interesting but in many ways the understanding of these inflammatory illnesses of the spine is still incomplete.  In the early days people got diagnosed with AS if they showed the history of back pain and x-ray showed the evidence of ankylosing going on.  That was the tool they had so that's how diagnoses were done.  But they always had the problem of why some people had all of the symptoms but did not show the x-ray evidence.  MRIs then became more popular and it gave a finer tool for seeing the evidence of chronic inflammation.  But still there were people who did not show that evidence but had symptoms.  HLA-B27 became another tool in the toolbox for diagnosis but the connection to AS and spondyloarthropathy is not crystal clear or consistent.  Today we seem to be at a point of incomplete and inconsistent understanding of the disease.  Many fine rheumatologists still seem to look at it as AS or nothing.  Others see it as a family of related illnesses with a continuum of symptoms.  I was fortunate in that my very frst rheumatologist saw it the latter way and still treated me as having an autoimmune disease even though I did not have evidence from the imaging studies. Later rheumatologists had varying degrees of agreement with that.  Unfortunately it still depends on which doctor you see.

​  Also, I agree with Maureen in that you dont want to try to challenge or outthink your doctors.  Doctors have years of training and they also have egos like all of us.  The point is not to challenge them as it is to be an informed patient.  Doctors don't mind you being educated and asking pointed questions.  They do mind the insinuation that you know more than they do.  I think its up to you to understand as much as you can about your condition, ask good questions and if you believe that you are not getting good treatment then find another doctor.  Just understand that there is a lot of variation in our current understanding of this condition.  Some doctors will not take you seriously unless they see the imaging evidence.  Others do and you need to find the ones that do.

 

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I also forgot to add that part of the problem is that there is some confusion regarding terminology.  Originally I had read some literature that used the term axial spondyloarthropathy.   Other literature refers to axial spondyloarthritis.  They are talking about the same thing.  The NAAS (National Association of Ankylosing Spondylitis) puts out a very nice and very understandable brochure about axial spondyloarthritis.  It gives a good understandable explanation of the range of illnesses that this broad term covers and what they call it when no evidence can be seen on imaging studies.  If you have somewhat of a more technical background there is another medical journal article called Nonradiographic Axial Spondyloarthritis

New Definition of an Old Disease?​   ​It is a higher level discussion and requires a little experience reading academic journal articles but gives a wealth of information if you can read it.  The authors are Joachim Sieper and De´sire´e van der Heijde. 

​  The point is that the information is there.  Search for articles under axial spondyloarthropathy or axial spondyloarthritis.  Don't let a medical person tell you that you either have AS or nothing.  By nothing I mean that you may be told that you have normal osteoarthritis.  When they tell you that they mean "Its a normal degenerative process.  We all have it to some degree so suck it up and quit being such a sissy"  Anyone who has gone through this illness knows it is not just normal age-related degeneration.