If your rheumatologist or GP spouts any of this nonsense, look for another doctor; if you have no other options, arm yourself with research and bring a friend to your appointment for moral support and backup. There are many doctors, even rheumatologists, who firmly believe these, and other, off-base things. I suspect AS is not really “rare” but simply undiagnosed because of these myths, and other stupid-ass shit, like “only men between the ages of 18-35 get AS“:
1. Ankylosing Spondylitis (AS) Only Affects the Back
No, not at all. This is why many women are diagnosed with fibromyalgia [because they are female, of a certain age, and complain of pain, fatigue and sleep problems] since some doctors think neck, hand, foot, and other pain have nothing to do with AS. Instead of asking more questions, following up or delving deeper, many women are diagnosed with FM and dismissed, maybe with a prescription for Lyrica or Cymbalta.
2. Ankylosing Spondylitis Primarily Occurs in the Elderly
No. It may seem so because elderly people are more likely to show obvious signs of fusing, like a curved spine. You’d think the goal would be to prevent that kind of end-stage damage. But it can take 7-10+ years to get the right diagnosis, possibly longer if you are female. Too many doctors think that fusing is a symptom, rather than the end stage of a disease process.
3. Ankylosing Spondylitis is Easily Curable
If it were, do you think my black ass would be in pain all the time and using a motherfucking cane?
4. Diagnosis of Ankylosing Spondylitis Requires Many Tests
Though we’d all like to think that “tests” provide all the answers anyone needs, that’s a dangerous oversimplification. Some doctors will insist that only people who test positive for the HLA-B27 gene can have AS but there are many people with the HLA-B27 gene who do not have and never get any symptoms of AS. The opposite is also true, that you can have AS and even fuse though you do not carry that gene. Diagnosis takes time, a thorough medical history, patience and, sometimes, sophistication. You can’t decide if it’s AS from one round of tests and a 15-minute office visit, especially if the doctor doesn’t think patient input is needed.
5. Drugs Are the Only Way to Treat Ankylosing Spondylitis
Generally speaking, drugs aren’t the “only way” anything can be treated. No responsible doctor will tell you that all you have to do for your Type I diabetes is take insulin. Getting a bypass won’t help much if you do not do something like quit smoking or start some kind of exercise. There are things that you can do to ease your symptoms, reduce your suffering, and maintain your strength, flexibility and range of motion. See #6 and the references below.
6. People with Ankylosing Spondylitis Should Avoid Exercise
BWAH-HAH-HAH! Do this if you want to be bedridden and disabled in a year or 2. Though high-impact sports like rugby may no longer be the best choice for you, there are lots of things you can do and that are helpful and feel good: When you have a chronic illness, you need to take care of yourself well since your body is already under a great deal of stress.
Yeah, chronic illness is stressful. If you don’t know that, I’m glad you’re a healthy person.
My ASers, swimming, walking, hatha yoga, stretching, tai chi, water aerobics [especially in a warm pool, and 86º is not the kind of warm I mean; think “therapy pool,” about 91-94º], and bicycling are all good choices but be sure it’s something that works for you, that you don’t overdo it, and that you are always safe. People like us can fall down and hurt something, badly. [No insurance company will pay to monitor your AS with regular MRIs so the first time you know bones have started to fuse and become brittle is after you fall and break some things.] And if you have never exercised, start slowly, gradually, gently. You don’t have to be in “perfect” physical shape tomorrow, next year or ever. Play this for the long game, not next week. And don’t forget pleasure, joy. Stretch outside in the sun. Walk while your kids run or roller skate.
Scroll down to Tables 1 and 2 in this post for recommendations for AS patients.
7. Drug Treatment for Ankylosing Spondylitis is Always Expensive
Always? No. NSAIDs can be economical. Biologics can be very expensive but many drug manufacturers have assistance plans to help with costs, whether you have insurance or not.
8. Ankylosing Spondylitis Leads to Severe Disability
I’m not sure why the picture with this slide is of someone smoking a cigarette.
No, AS is not a death sentence. If you take decent care of yourself and have a supportive medical team [“team” meaning your PCP/GP, rheumatologist, pain management doctor, physical therapist, psychiatrist, acupuncturist, etc.], you can avoid “severe” disability.
Your life will change with AS but it doesn’t have to end. Some people do have more severe forms of AS but it’s best not to assume you will become one or that you are doomed, doomed, doomed. It sucks but I don’t feel, most days, like the walking dead…..
9. There is Little I Can Do to Help Myself
You should know right away this one is total bullshit. There is always something you can do, even if it’s just advocating for yourself to get the care you need. You can exercise or stretch, get physical therapy, find a therapy pool, soak in a hot tub, eat well, find ways to reduce stress, and maintain a quality of life that fulfills, and fills, you. Nothing is hopeless. Not even death because then at least pain and suffering end.
10. If NSAIDs Don’t Work, My Treatment Options Are Limited
What does “don’t work” mean? For example, I take a NSAID daily, and did before my AS diagnosis came, but I still need a cane, exercise, heat, a biologic, a psychiatrist, etc. Without the NSAID, the peripheral arthritis [part of AS, not separate] locks up my fingers, feet, and toes and my spine, SI joints, jaw, wrists, ankles, etc. get worse within 24-48 hours. Using a NSAID can cut down on the amount of pain medicine you need daily. [Pain medication is a whole other bucket of turds to wade through.] Just because NSAIDs don’t stop AS cold doesn’t mean they don’t work.
And there are other options if you cannot take NSAIDs. Finding them may take some patience, trial and error, and a doctor who’s willing to work with you as a team. Even if there’s no simple answer, being heard makes a difference.
11. Aren’t TNF Blocker Side Effects Dangerous?
Have you looked at the side effects of any prescription drugs? Antidepressants can cause depression and mood swings, suicidal thoughts and mania. Aspirin has potential side effects. Heart disease is strong in my family so I avoid COX-2 inhibitors. There are some side effects that look very, very scary but they are truly rare. If you have certain kinds of risk factors, just like with any other drug, TNF blockers/biologics may not be the best option for you.
12. TNF Blockers Are All the Same, So It Does Not Matter Which One I Use
Many of the biologics/TNF blockers used for AS were developed for and work best for rheumatoid arthritis (RA). Why one works better on person A than person T isn’t clear. Trial and error is required. And sometimes a biologic works for months, even years, then loses its effectiveness for you. Then you need to try another. Some people find that none of them help or the side effects are too serious [see #11].
13. TNF Blocker Injections Rarely Cause Skin Reactions
No, they do. Not every time, not every person, but skin reactions do happen. Because…well, shit happens, boo.
14. TNF Blockers Can’t Help Slow Damage in AS
I’ll quote from the slide here because the research I’ve seen seems inconclusive:
Several studies have suggested no effect of TNF blockers to slow disease progression in AS. However, a 2013 study (Haroon) suggests that TNF blockers can reduce progression of spinal damage as seen on an X-ray by up to 50%. Researchers state that treatment needs to be started early and continued long-term. In the study, a benefit was seen at 4 years. Compared to patients who started treatment earlier, those who waited 10 or more years to begin TNF blockers were twice as likely to progress. In this study, NSAID use did not have a significant effect on progression; but patients may still need to use NSAIDs for pain control.
One 2013 study is not enough to say that biologics/TNF blockers “reduce progression” [not “stop” but “reduce,” slow down], meaning the fusing of the spine and other joints. Damage great enough to be seen in X-rays indicates a good amount of disease progression, beyond what MRIs can pick up earlier in the disease process.
If anyone, doctor or whoever, tells you that biologics “cure” AS or that if you take biologics or NSAIDs that “you will never fuse,” raise an eyebrow and approach everything this person says with a good dose of critical thinking and analysis.
15. If TNF Blockers Don’t Work, There Aren’t Any Other Options
There are other options. There are always other options. Don’t let yourself get blocked in a corner by someone else’s ignorance or laziness. Or prejudice.
16. There is No Way I Can Afford TNF Blockers
See #7. Often, your rheumatologist’s office will know of drug manufacturer programs to reduce your costs, and private insurance will cover biologics if you follow their dance steps. It is true that co-pays can be $50-100 or more but you don’t take biologics every day. And if they help, that out-of-pocket cost is worth it, especially if it means you can go back to work and enjoy your family and go out with your friends on a regular basis.
I fucking wish.
More, more, more—with AS or any chronic, and especially any chronic invisible, illness, knowledge and education are crucial.
GBS on AS
The Ankylosing Spondylitis Support Forums: Kick AS
Braun, J, et al. “2010 update of the ASAS/EULAR recommendations for the management of ankylosing spondylitis.” Annals of the Rheumatic Diseases 70 (2011): 896–904.Academic Search Complete. Web.
Brophy, Sinead, et al. “Fatigue in Ankylosing Spondylitis: Treatment Should Focus on Pain Management.” Seminars in Arthritis and Rheumatism 42 (2013): 361-367. Academic Search Complete. Web.
Davies, Helen, et al. “Patient perspectives of managing fatigue in Ankylosing Spondylitis, and views on potential interventions: a qualitative study.” BMC Musculoskeletal Disorders 14 (2013):163. Web.
Facebook has a number of AS support groups. Keep in mind that some online support groups are dominated by those with more severe illness, or AS compounded by other conditions and illnesses. If it’s bringing you down, take a break, find another group, or start your own.
Feldtkeller, Ernst, Gudrun Lind-Albrecht, and Martin Rudwaleit. “Core set of recommendations for patients with ankylosing spondylitis concerning behaviour and environmental adaptations.” Rheumatology International 33.9 (2013): 2343–2349. Academic Search Complete. Web.
Hill, Hilary, Alan G. S. Hill, and Julia G. Bodmer. “Clinical diagnosis of ankylosing spondylitis in women and relation to presence of HLA-B27.” Annals of the Rheumatic Diseases 35 (1976): 267-270. Academic Search Complete. Web.
Lorig, Kate, and James Fries. The Arthritis Helpbook: A Tested Self-Management Program for Coping with Arthritis and Fibromyalgia. Cambridge, MA: Da Capo, 2006. Print.
O’Shea, Finbar, David Salonen, and Robert Inman. “Editorial: The Challenge of Early Diagnosis in Ankylosing Spondylitis.” Journal of Rheumatology 34.1 (2007): 5-7. Web.
Poddubnyy, Denis. “Improving Diagnosis of Ankylosing Spondylitis and Spondyloarthritis in General.” International Journal of Clinical Rheumatology 6.6 (2011): 655-668. Medscape. Web.
Reveille, J. “Epidemiology of Spondyloarthritis in North America.” American Journal of the Medical Sciences 341.4 (2011): 284–286. National Center for Biotechnology Information, U.S. National Library of Medicine. Web.
Slobodin, Gleb, et al. “Recently diagnosed axial spondyloarthritis: gender differences and factors related to delay in diagnosis.” Clinical Rheumatology 30 (2011): 1075–1080.Academic Search Complete. Web.
Spondylitis Association of America
van der Horst-Bruinsma, Irene, et al. “Female patients with ankylosing spondylitis: analysis of the impact of gender across treatment studies.” Annals of the Rheumatic Diseases 72.7 (2013): 1221-1224. Academic Search Complete. Web.
Weisman, M. Ankylosing Spondylitis. Oxford: Oxford UP, 2011. Print.