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Hi, Platypus:

Certainly, the key really is whether the AS is active when the blood was drawn and, as you suggested, whether the inflammatory markers are modified by the action of drugs like NSAIDs.

Most people with AS will have increased lymphocytes during disease activity, according to Ebringer, et al, since the IgA (IgA-Kp) is the (proposed) provocative AS agent. If it is found in elevated amounts (as the monomer) in whole blood, it is orders of magnitude more plentiful as the dimer in lymph. A rare complication of AS is IgA amyloidosis due to increased IgA circulation. I don't know if or whether ANA readings are affected, or how this possibly relates (another question for my medical friends).

CRP is apparently the one to worry about since it could be linked to aortitis or other cardiovascular conditions and there might be an extra caution to better control cholesterol levels, so that is another test in which we should be interested.

Since FM is a common "co-diagnosis" (to be polite) with AS, I contacted some doctors who claimed good results treating this condition, but learned along the way that FM is non-inflammatory and always symmetrical and there are (were?) 18 body points, the majority of which must be painful, to obtain a diagnosis. Well, if you press hard enough, I suppose that ANY point will hurt and then we can make even AS appear symmetrical, but the problem in AS is still the negative inflammation markers that so many people (especially women, since 'AS is a man's disease' is still the prevailing wisdom) are stuck with--often preventing valid diagnosis. A nuclear bone scan is often better than mri or X-rays, but a simple blood test should, by now, have been devised to provide correct information.

The differences between AS and FM are significant enough that that nobody should be diagnosed with FM when they really have AS. Those who do not indicate can have a tough time not being 'typical,' but chronic and recurrent inflammation of right (only) hip for example, plus positive antigen status, should not warrant a misdiagnosis of FM over AS, despite the lack of elevated ESR or CRP. Such a misdiagnosis is regrettably not uncommon.

I have no doubt that FM can be secondary to AS, and I have the basis for a new thesis: Fibromyalgia, AS, and Global Warming

It goes something like this: I noticed the diagnostic points in FM are similar (albeit not exactly the same) to symptoms experienced by mixture divers whose mixture is not quite right--oxygen content wise. The possibility of oxygen deprivation as a cause for many cases of FM is not unreasonable, based upon one fact that FM relents in a significant percentage of those patients who have been 'treated' by doing aerobics, and another fact that in many cities oxygen levels are much lower than normal, displaced by 'greenhouse gasses.' In certain locations, the O2 levels are an estimated 50% lower than they were just 100 years ago. The fact that we who suffer with AS do not like to breathe very much, or even move very much sometimes if at all, might make us prime targets for FM, if there is any validity to this hypothesis.

I know FM just cannot be this simple--in total--but these are some interesting observations that may be useful.

As the disease progresses (or in my case 'accelerates' due to NSAID usage), the ESR can become elevated where it was earlier not. After I began taking NSAIDs my ESR increased from a range 28-48 to often over 100; certainly, I was always an indicator.

Best Regards,
John



John,

I hope you will keep in mind that if people are HLA-B27 negative that agent is not likely to be the reason that they have AS.

My experience has been the opposite to your own for a variety of reasons. I have been on NSAIDS on and off since the age of 22, and on a more regular basis since the age of 26. The reason has nothing to do with AS, but was related to trauma. At the age of 22 I fractured and dislocated my coccyx, and around the age of 25-26 I was involved in yet another car accident and suffered a severe whiplash. Since then I have had other accidents, usually sprained ankles, which was nothing new since I began spraining my ankle when I was about 12 years old. Certainly, in my case, because I was kept on the anti-inflammatories nothing was showing in my blood tests. I had my first bone scan in 1987 and there was only minor inflammation that was dismissed out of hand by the rheumy. My second scan showed the exact pattern of the inflammation.

My second scan is significant because it showed that I had generalized arthritis. At the time I went to the rheumy my blood tests did not show anything elevated. That rheumy diagnosed generalized osteoarthritis because there were no inflammation markers. He put me on glucosamine and it has done nothing at all for me. Now this rheumy should have taken another look at the pattern of the arthritis on the scan because he also diagnosed secondary enthesitis (he had the enthesitis part correct) but for the wrong reason. The pattern on scan indicated arthritis in the thoracic spine, the thoro-columbar spine, cervical spine, hands, wrists, knees, ankles, and toes. There was a lot of activity happening in my toes at the time of this scan. It is obvious that the NSAIDS (Celebrex has kept everything under control) have been working very well in my case.

Now here comes the crunch, for after the Vioxx scare I have been reluctant to keep up with the Celebrex on a daily basis. Sometimes I need to take 2 a day to take the edge off the inflammation, but I do this for no more than a week, and then I stop the medication as soon as possible. The Mobic works but not as well as the Celebrex. On the other hand my CRP result began to decrease after I began the Mobic.

The NSAIDS would not have accelerated your condition, because if you had the disease undiagnosed for a long time, it would have already been too late for them to help you. From what I have read, if you had an aggressive form of AS then the newer biologics would have been more helpful but not the NSAIDS on their own. Also the condition would have accelerated to serious if you did not have an exercise routine in place.

I am now 52 years old, and I only got my diagnosis this year, and only because I persisted with my doctor, and I was the one who suggested the possibility of AS. He understands that this is a man's disease, and he knows about the link with HLA-B27 but there are still quite a few of us who do not have the gene. My doctor ordered new x-rays, and then in conjunction with the information that I gave about the pattern of the pain, plus the result of the x-rays, plus the bone scan, he was willing to state that I had AS,even though the radiologist stated that he did not see signs of AS (read bone fusion). On the other hand I have x-rays from 25 years ago, and my cervical spine was in much better condition then. I have other x-rays and can see the difference for myself. On top of that, I have x-ray reports that pointed to sclerosis on the right SI joint, but the techician thought it was not significant because it did not show on a different angle.

A lot more work needs to be done with FMS. They now know that there is a problem with something called substance P. It is possible that they could develop a test that is specific to FMS. The disease FMS is really just a set of symptoms. The doctors have been giving this diagnosis when they cannot find the most likely reason for the pain. It is a faulty diagnosis because it often misses the mark, especially in women, and especially in those of us who are HLAB27 negative.

The problem seems to stem from the fact that the doctors do not look at the symptoms in an holistic fashion. Eighteen years ago, my feet were in agony, but the rheumy did not take the foot pain into account. He dismissed it as having a mechanical cause. The same goes for the pain that I had on the left side, near my SI joint and radiating into my hip. Also, he did not take into account my history of trauma which went back to at least 1959. My mother now has leaky discs and my remaining sister has a history of back problems too, so it is possible that the 1959 accident has a bearing on my disease.

Another factor that had been overlooked has been my propensity to retain fluid. This is not typical with people who have FMS but from what I have read here there seems to be a link to AS. The lack of an holistic approach meant that this was never discussed with the doctor because I had been having the fluid retention problem since I was a teenager.

I should add here that my feet bruise very easily and I cannot walk for long distances, and it has always been that way. I have trouble climbing hills, especially sand dunes, and again this was a sign of something wrong.

My own exercise routines over the years have kept my body flexible, even though I am overweight. At this point in time it is important to maintain the flexibility with my body and spine. Without the flexibility I would be in a lot worse shape, NSAIDS or no NSAIDS.

Today is the first day of the rest of my life