Tuesday, March 13, 2012
I have had that feeling several times when I've had my knees injected with cortizone. The anaesthetic which is injected along with the steriod usually gives me half an hour or so of feeling like my knees are twenty again, even though I know they are an arthritic mess. I've been able to enjoy the respite from feeling old, sore, and creaky all the time without forgetting that the knees are shot and that I'd better take care even though they feel good for that brief time. I guarantee like the Men's Wearhouse Founder, that I could manage to feel better all the time without forgetting myself and damaging the joints the anti-NGF's are causing to feel better. Cross my heart. Feel free to recruit me for the renewed studies!
http://www.medicinenet.com/script/main/art.asp?articlekey=155845
Friday, February 25, 2011
Mortality in ankylosing spondylitis. - PubMed.gov
I hesitate to put info like this out there because it can be demoralizing and cause fear. But, after thinking about it a fair bit, I believe that the tip-off that this study and many others reflecting similar information can help those of us with inflammatory illnesses such as AS understand the impact of the disease on more than just the skeletal, connective tissue systems. There is clear evidence that AS causes a reduction in life span without regard to treatment received. This is mainly due to the increased risk factors for heart disease, as well as the abnormal treatment of lipids in the body and many other common sense risks which can shorten our lives.
Knowing that AS brings with it an increased heart risk due to inflammatory changes, as well as many common effects of AS work to cause or accelerate heart disease (these include microvascualr changes, endocrine changes such as low testosterone and increased cholesterol as well as poor sleep habits and less exercise overall). Knowing that AS is an over-arching risk factor for heart-related mortality is a form of empowerment for those of us who have this disease - but only if we do as much as possible to treat and address all of the risks that AS ADDS to our personal cardiac risks. Below is the abstract from a study showing the many increased risk factors to increased mortality due to AS.
Mortality in ankylosing spondylitis.
Research Institute, Hobart, Australia.
Abstract
Ankylosing spondylitis (AS) is a chronic inflammatory rheumatic disease which causes pain along with loss of physical function and quality of life over many years. It has also been shown to increase mortality compared to the general population, independent of treatment modalities. Cardiovascular deaths are increased, and recent studies suggest both an abnormality of lipid regulation and microvascualr changes. Increased rates of suicide, accidental death, and alcohol-related deaths have also been reported. This review examines rates and causes of increased mortality in AS and highlights a need to focus on cardiovascular risk factors and psychological health in addition to physical disability in patients with AS.
Increased Mortality Rates in Ankylosing Spondylitis Patients. PubMed
Thursday, January 13, 2011
Wednesday, January 12, 2011
Striking prevalence of Axial Spondyloarthritis in primary care patients with chronic low back pain; a cross-sectional study
Among the most common causes of chronic pain is low back pain. Recent study data indicates a "strikingly high" correlation between chronic low back pain and Ankylosing Spondylitis. In my case, I had unusual wear on the low back due to a severe knee injury which caused a limp for a number of years - a limp where the low back and hip took on the load bearing for the injured knee, as well as a shearing motion in doing so. This strain could have been a contributor to chronic low back pain. Then there was the osteoarthritis which was more advanced in me than typical in young people as a result of the injury and surgeries such as bone-grafting and other highly invasive interventions. Then there were episodes of lumbar disc herniation requiring surgery. All of these alone or as a group, as well as a chronic pain syndrome wherein the overstimulation of certain neural pathways causes perceived pain in the low back, could be responsible for chronic low back pain in my case (and at least some of these perhaps in your case). Since it on average requires 7-10 years to diagnose AS, and since AS is most successfully treated early in its' development, there is a new push to give primary care physicians better information so that that long period where AS is seldom diagnosed can be brought down to a shorter interval - and hopefully therefore, allow more effective treatment.
Not only does AS turn out to be present in over twenty percent of patients experiencing chronic low back pain, but that number may be significantly under-reported. This abstract, and the full article are worth reading if you, or someone you care about is experiencing chronic low back pain.
Remember this: Just because there is something that MIGHT be causing chronic low back pain (injury, prior surgery, wear and tear arthritis, etc.), don't rely on the fact that your chronic pain COULD be due to one of these other causes, get to an experienced rheumatologist who will carefully look at your status and make a diagnosis of AS if appropriate. In my own case, the first rheumatologist I saw, about four years into the progression of symptoms, noted that I had injury and osteoarthritis and made the assumption that these were the cause. My own outcome from treatment of AS would likely have been far more successful at early days in the development of the disease, than it has been since I saw an excellent rheumatologist about eight years into the situation. If you are referred to a rheumatologist, or have endocrine issues accompanying your chronic lower back pain, see the rheumatologist and by all means get a second opinion. Four or five years lost in fighting AS is a damn shame.
Tuesday, November 30, 2010
Press - News - 454 - A strong familiality of ankylosing spondylitis through several generations
Spondylitis Association of America
It is known that ankylosing spondylitis has a large genetic component, making it more common among those of the same family when a disease history is present.
A study published in the "Annals of Rheumatology" reinforces the evidence of this, by concluding, "Patients with AS in Iceland are significantly more related to each other than to randomly sampled control subjects. This is in agreement with previous reports on the familiality of AS, but the present study has more power and extends over larger familiar cohorts than previously reported."
Other current research into spondylitis is seeking the genes that cause AS.
Click here to read the abstract >>>
Press - News - 454 - A strong familiality of ankylosing spondylitis through several generations
Friday, September 03, 2010
Understanding Arthritis: What is inflammation?
When the Immune System Turns Against You
Arthritis isn’t just “wear and tear”. It is inflammation, and understanding the causes of inflammation can help immeasurably in combating the debilitating and potentially life-altering effects of arthritis. The following article, from WebMD is a very straightforward discussion of the inflammatory process.
Wednesday, September 01, 2010
Ankylosing Spondylitis: All - Mayo Clinic.com
When I was finally diagnosed with AS ion 2009, I believe that I was typical in terms of the amount of time it takes to diagnose AS. Recent studies indicate that it routinely takes between seven and ten years to diagnose the disease. I want to link to a very good article about the disease, progression and treatment options, and to encourage you to follow the advice in the article: write a careful, thoughtful, detailed summary of your symptoms, progression of symptoms, and any other conditions that may be present for you.
In my case, I was difficult to diagnose because as a result of significant joint injuries and a series of exceptionally invasive surgeries beginning when I was twelve or thirteen, I had osteoarthritis one would normally expect in a man seventy years old or more. I had symptoms in the hands, feet, shoulders, lumbar back, cervical spine, hips and knees. When I first saw a rheumatologist, the person found the history of surgeries, bone grafting, boring out of spine nerve openings, and combined with the x-rays that showed osteoarthritic changes, the rheumatologist stopped looking and told me that I would need joint replacement and that my problem was osteoarthritis.
Later on, as the fatigue and pain began to affect muscles and connective tissue like ligaments and tendons, I decided to see if perhaps the problem was metabolic. I have hypothyroidism, and when I saw an endocrinologist a complete workup showed that many of my pituitary systems were far outside normal ranges. After some evaluation and treatments, I was referred to a very experienced and exceptional rheumatologist named Steven Overman at the Seattle Arthritis Clinic. The endocrinologist believed I had an autoimmune connective tissue disease.
Dr. Overman did a complete workup, and after evaluating all the data, was able to tell me that yes, I had osteoarthritis, but the main problem, causing the connective tissue inflammation, fatigue, hip, sacroiliac pain and the pain from back injuries and arthritic changes (many of the facet openings were being filled in with arthritic material, causing the nerves to be compressed as they exited the spine). He also found osteophytes (arthritic bone spurs) at the point where ligaments and tendons attach to bone.
Finally, after ten years of declining health, chronic pain that seemed to get worse every year, fatigue that made the travel and long hours of my executive job more and more difficult, I had a diagnosis and could begin treating the root problem. The morning stiffness that lasted a couple of hours and sometimes more, the need to spend hours in a position that took the load off my spine and knees, the poor sleep and frequent interruptions, the increasing number of days when I was too fatigued and too sore, and somehow less able to concentrate…all could now begin to be treated.
I encourage you…don’t give up. Don’t assume you are just a wimp (I did!). Don’t give up when your first (luckily my Internist, Dr. Warren Fein, also saw the deterioration and was willing and helpful in pursuit of the cause(s) of my declining health and possible treatments – I’ll forever be grateful for such an exceptional GP to help me though my struggle to find a cause for truly life-changing health changes) or second or tenth doctor doesn’t get you some improvement. You have to be your own advocate and keep on working at researching your symptoms, finding possibilities and investigating them with whatever doctor you can at that time. The AVERAGE time to diagnosis for AS is 7-10 years. Don’t give up until you find some relief. Some AS patients are able to do amazing things after treatment – I know of one who ran a 5k. I am still very much in a place where I have trouble getting around, and have to conserve my energy every day, just to be able to do the most important things. But I have a path to a better quality of life, and I want that for myself, and for you, if you suffer from AS.
Please read the article below and start your own trek toward a better life.
Friday, August 27, 2010
Magnetic Resonance Imaging in Spondyloarthritis: Abstract and Introduction
This is a good source of information on how MRI technique can be very useful to SA sufferers – in fact, the study claims that MRI and TNF are the two greatest technological improvements in the treatment of Ankylosing Spondylitis.
Magnetic Resonance Imaging in Spondyloarthritis: Abstract and Introduction
Wednesday, August 11, 2010
PSA Aims to Hasten Spondylitis Arthritis Diagnosis
The Spondylitis Association of America will produce and sponsor PSA announcements aimed at solving one of the most important issues related to Ankylosing Spondylitis – the long period of time that usually elapses between onset and diagnosis. A recent study indicated that on average between 7-10 years can elapse between onset and diagnosis.
In my own case, I believe that I began experiencing symptoms in early 2000, and despite seeing excellent doctors, I was not diagnosed with SA until 2009. The biggest issue created by the passage of time prior to diagnosis is that the patient receives no treatment, thereby experiencing damage and pain that can often be treated. And since SA is a systemic autoimmune disease where the body’s immune system attacks its’ own cells – particularly in joints, tendons and ligaments.
The PSA will offer a link to an online assessment that can help to identify which people may have the disease, and to do so earlier. The online assessment, which you may use to self-screen, and to take to your doctor to discuss, can be found here: http://www.backpaintest.org/.
The press release from the SAA can be found here:
Friday, June 18, 2010
Spondylitis – From Denial to Support
This article is from this month’s Spondylitis Association of America publication, and I identified with the author in a number of his observations. As he says in the article, the stories of people with AS are as unique and complex as the disease itself. Many people have been suffering and searching for answers for years. Many people alienate the people closest to them. The impact of pain, limitations and fatigue often cause irritability, frustration, social withdrawal and the gradual (or not so gradual) loss of ability to do normal or enjoyable activities can leave one feeling depressed, grief-stricken, even eroding self-confidence, reasoning ability and memory.
The author hits upon an outstanding concept when he recognizes with the diagnosis he became part of a group. A group he wants nothing to do with, and a group of one – the author himself. At least initially. It is true that most people have no idea what SA is, or what it can do to a person, and that alone tends to isolate an AS patient from most of the people in his or her life.
Again, if AS affects you, or anyone in your life, this article is worth reading.
Complications of Spondylitis - Ankylosing Spondylitis Complications, Areas of Inflammation and More
If someone in your life has Ankylosing Spondylitis, this article is an excellent and succinct tutorial that will give insight into how the disease affects them. If you have AS, this article is an excellent tutorial and offers some very good information to consider.
This is an outstanding article describing the impacts of Ankylosing Spondylitis. Many people – if they have heard of it at all – think AS affects only the lower spine. This article describes the process and progression of the disease, and the impacts on other areas of the body, fatigue and even chest pains caused by AS.
I find myself in the position of having an advanced level of AS – impacts in the shoulders, hips, knees, back, and calcification (causing inflammation) where ligaments and tendons attach to bone. Because of injuries early in life, and the resulting early onset of osteoarthritis, the first two rheumatologists I saw simply noted the osteoarthritis and stopped looking there. Finally, I was referred to an excellent doctor who looked beyond the first issue and identified AS as a culprit in my life. This diagnosis allowed me to get treatment for the process (AS) that was causing most of my symptoms- including Remicade infusion therapy- which helped me a great deal. If you’d like to read more about Dr. Overman, and his highly regarded book - You Don’t LOOK Sick! Living Well With Invisible Chronic Illness, which was a finalist in the Health category of Best Books 2005 awarded by USA Book News, here is a link to his profile and clinic information: Seattle Arthritis Clinic Staff
Understanding the disease you have, and managing your own treatment, lifestyle and health is an absolute necessity in my opinion, and this article is a good place to start:
Complications of Spondylitis - Ankylosing Spondylitis Complications, Areas of Inflammation and More
Thursday, January 14, 2010
Cobra Venom Erases Arthritis Symptoms : Discovery News
This is an interesting article that hints at not only relief from pain for arthritis sufferers, but also at reducing future damage. Worth a read:
Tuesday, November 10, 2009
Remicade, Lidocaine and Cortisone
I went in today for my Remicade infusion. After two loading doses I had definitely felt some real improvement in my smaller joints. I’d had pain and stiffness in my hands, which had made typing and even writing much with pen or pencil difficult. My left thumb and my right middle finger would sometimes lock in position and I literally had to snap them loose with the other hand. And it didn’t feel good! My feet as well as the heels of the foot were always stiff and sore, especially with any standing at all. The thickening of both shoulders had stretched the muscles and connective tissue and those hurt often. There were other aches and pains as well. Remicade thus far has improved the way those smaller joints feel by a noticeable amount. I am hoping that I see even more benefit now that it is at full strength in my blood. Since advanced osteoarthritis – something I have a strong family history of, but that likely was set in motion decades earlier than typically by the bone-grafting and revascularizations surgeries I had on my left knee as an early teen – is another contributor to my creakiness, and my knees have both been very sore, I got injections today of lidocaine (numbed the joint for an hour or two) and cortisone (intended to reduce inflammation). Hopefully the cortisone will reduce the inflammation. I’ll also have the synthetic joint fluid injections done next week or so. Those of you who’ve had needles inserted into swollen and sore joints will know that it isn’t that much fun. Today the lidocaine kicked in quickly and within seconds the knees weren’t hurting at all. I’d love to be able to use lidocaine every day! I’ll have to hope that the cortisone does it’s bit and the synthetic joint fluid works well also.
It is always complicated to resolve interrelated conditions - when you have more than one or two issues contributing to one another, and I’m working on a half-dozen conditions that feed one another. I’ve been pretty limited and I am still not able to be very active. But for the first time in years I have seen this degenerative group of conditions stopped, and actual progress has begun. So I have my fingers crossed. I’d seen a rheumatologist a couple years ago, but that doc noted advanced osteoarthritis and sent me on my way with instructions to see an orthopedic surgeon and get the knees replaced. I was referred to Dr. Stephen Overman at Seattle Arthritis Clinic and from the moment I had my intake appointment I knew that if I could be helped, I would be. He’s written a great book for people combating diseases which are not obvious, called You Don't Look Sick!, written with a patient named Joy H. Selak (http://www.joywrites.com/).
As a person who has always been active, busy, engaged and had a good time too, the degenerative process that I had been experiencing over recent years was more like a death in the family than an illness. I found myself unable to do so many things I’d always done, and my sense of humor went to live with somebody else! Though I have a long way to go, Dr. Overman, the book he has written with Ms. Selak, Remicade, and the many tools and techniques I’ve been made aware of at the Seattle Arthritis Clinic have given me the first progress I’ve seen in years, and hope that I’ll gain back a meaningful semblance of the things I have seen slip away in recent years.
Sunshine on Discovery Bay
As always, the photos we use are either my own, or in the public domain. Please let me know if there are any errors and I'll correct them immediately.