Possible Complications of Ankylosing Spondylitis

Ankylosing Spondylitis (AS)is a chronic, autoimmune type of arthritis that triggers ankylosing spondylitis backpainful inflammation in the body. Most commonly, AS affects the back, buttocks, and pelvic region, but symptoms can spread to other joints and organs within the body as the disorder progresses. Also note, that this disorder affects every individual differently and in some cases the symptoms can begin in the peripheral joints (joints not located in the spine such as knees, ankles, wrists, fingers, etc). Uncontrolled inflammation can contribute to other complications throughout the body ranging from mild to severe and disabling.

Possible complications are:

  1. Fatigue – Fatigue and tiredness is one of the most common symptoms of Ankylosing Spondylitis. The cause of the fatigue is the higher levels of inflammation within the body and the body’s constant fight to try to keep the inflammation under control. Fatigue is often labelled patients as the most debilitating of their symptoms. Some have described the Fatigue to be similar to the fatigue that accompanies the flu. However, unlike the Flu, you do not recover from AS in just one or two weeks. TNF-inhibitors prescribed by rheumatologists as well as regular exercise can help to lighten the load of the immune system, thereby relieving the fatigue and improving the patient’s quality of life.
  2. Reduced flexibility – as with most kinds of arthritis, AS patients can experience reduced flexibility in some or all of their affected joints. The damage to joints caused by inflammation can restrict the movement of muscles and joints as the disease progresses. With AS patients, a Yoga-Poses-to-Help-Ankylosing-Spondylitis-03-722x406particular concern is that this will happen within the spine and that the spinal vertebrae will begin to fuse in the lower back, causing a permanent slumped forward position. In some cases, this can lead to permanent disability. It is important for AS patients to maintain an active life to promote and encourage their joints’ continued flexibility. Consult your physicians for approved exercises and stretches to maintain and increase flexibility safely.
  3. Eye Problems – It is important for AS patients to maintain regular check-ups with ophthalmologists as inflammation can spread to the eyes. Inflammation of the eye can be a symptom of Uveitis or Iritis, depending on the exact location of the inflammation within the eye. Let your doctors know if you experience eye redness, light sensitivity, eye pain, blurred vision, see spots, or experience unusual puffiness around the eyes. Ophthalmologists are medical doctors and you can use your regular medical insurance for their visits. Ophthalmologists will do thorough examinations of your eyes to ensure that you maintain proper eye health and they can monitor the affects that Ankylosing Spondylitis may have upon your eye health and vision.
  4. Social and Employment Problems – Ankylosing Spondylitis can affect a person’s social and public life as it progresses. AS can limit the type of work a person can do, especially when it comes to physical labor. Some AS patients may be able to work a full 40-hour week, some can only tolerate a few hours a day, and others may not be able to work at all, depending on how advanced their AS is and the jobs that they are expected to perform. Depending upon the AS patient’s limitations, they may eventually need to file for disability. AS patients should learn and focus proper sitting and standing posture, and take frequent stretching breaks if they spend a large portion of their time seated at a desk to prevent any further damage. Taking breaks to move around and stretch will prevent joints from locking up or becoming stiff. This also helps to keep the blood flowing and can assist with fatigue. It can grow increasingly difficult for people with AS to get out and socialize as their energy gets depleted from daily tasks. Chronic pain can be isolating as people experiencing the pain are less likely to visit friends. This isolation can lead to depression. Joining support groups, socializing online, and working to maintain friendships and relationships can feel draining, but it is important to do so in order to maintain your mental and emotional health.
  5. Gastrointestinal Disorders – AS inflammation can spread to the intestinal tract causing stomach pain and digestive issues. Symptoms of inflammation within the intestinal tract include: stomach pain, stomach ulcers, diarrhea, constipation, and problems digesting. In severe cases, Ankylosing Spondylitis patients can also develop Irritable Bowel Syndrome, Crohn’s Disease, or Ulcerative Colitis. It is important to discuss any of these symptoms with your doctor. They may provide you with dietary advice to limit the symptoms of these disorders.
  6. Osteoporosis – Osteoporosis is a medical condition in which the bones become brittle and fragile from loss of tissue. The bone becomes less dense than normal osteoporosis_s1_bone_densitywhich leads to the bones being weak and prone to breaks and fractures. When this disease develops in the spines of Ankylosing Spondylitis patients (caused by the severe inflammation within their body) it increases their risk for spinal injury. AS patients frequently develop Osteoporosis, even in the early stages of the disorder.
  7. Increased risk of heart disease – Cardiovascular problems that Ankylosing Spondylitis may contribute to include:
    1. Aoritis- Aortitis is inflammation of the aorta, and it is representative of a cluster of large-vessel diseases that have various or unknown etiologies. While inflammation can occur in response to any injury, including trauma, the most common known causes are infections or connective tissue disorders. Inflammation of the aorta can cause aortic dilation, resulting in aortic insufficiency. Also, it can cause fibrous thickening and ostial stenosis of major branches, resulting in reduced or absent pulses, low blood pressure in the arms, possibly with central hypertension due to renal artery stenosis.
    2. Aortic Valve Disease – Aortic valve disease is a condition in which the valve between the main pumping chamber of your heart (left ventricle) and the main artery to your body (aorta) doesn’t work properly. Aortic valve disease may be a condition present at birth (congenital heart disease), or it may result from other causes.
    3. Conduction problems – Your heart’s rhythm is its pace or beat. Conduction is the progression of electrical impulses through the heart which cause the heart to beat. You can have a conduction disorder without having an arrhythmia, but some arrhythmias arise from conduction disorders.
    4. Ischemic Heart Disease – Ischemic heart disease is also known as coronary artery disease or “hardening of the arteries.” Cholesterol plaque can build up in the arteries of the heart and cause “ischemia,” which means the heart is not getting enough blood flow and oxygen. If the plaque blocks an artery, a heart attack can result.heart
    5. Cardiomyopathy – Cardiomyopathy is a condition where the heart muscle is abnormal. The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.

It is important to take preventative measures to reduce the risk of cardiovascular problems. Though this applies to every individual, not just AS patients. Regular exercise and a healthy diet should be included as part of the treatment plan for Ankylosing Spondylitis. It also helps to avoid tobacco use and maintain a healthy weight.

  1. Amyloidosis – Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ. Amyloidosis can cause symptoms such as weight loss, water retention, tiredness, and in some cases tingling of the hands and feet.
  2. Cauda equine syndrome – This extremely rare condition is a bony overgrowth caused by inflammation. It leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves in the lower part of the back. If left untreated Cauda Equine Syndrome can lead to paralysis.

There are links provided within this blogpost to provide more information for some of these listed complications. Please consult your health practitioners with any questions or concerns you may have.  It is important to be your own health advocate when you have a chronic illness. You know your own body better than anyone and you know when there is something that is off, wrong, or not working the way it should.

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
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ANKYLOSING SPONDYLITIS IS…

ANKYLOSING SPONDYLITIS IS…

  • an autoimmune disease.
  • not curable.
  • genetic.
  • more common than multiple sclerosis, cystic fibrosis, and Lou Gehrig’s disease combined.
  • more than just a bad back.the spoon theory
  • not just a man’s disease.
  • a heartbreaking diagnosis.
  • referring to my energy as spoons.
  • a daily battle against my own body.
  • worrying about pushing my body too hard or too little.
  • pretending not to be in pain.
  • a pain in the butt.
  • weekly injections.
  • monthly treatments.
  • having a whole pharmacy of medications in your purse.
  • getting exhausted and out of breath after walking from one room to another.
  • feeling pain in places on your body you didn’t even know could feel pain.
  • sleepless nights.Ankylosing Spondylitis Pre-Existing condition
  • being given unsolicited health advice by people who mean well but have never even heard of AS.
  • a pre-existing condition.
  • a chronic illness without a cure.
  • taking a bath because you don’t have enough energy to stand for a shower.
  • feeling like a burden.
  • canceling plans or not making them in the first place because of your ever-changing health.
  • unpredictable flares.
  • a lifetime of doctors’ appointments and treatments.
  • feeling like you got hit by a truck, but pretending like you are okay.
  • being told “You don’t look sick!”
  • being told “It’s all in your head.”
  • hearing people say, “My back hurts too.”
  • hoping you don’t pass the gene on to your children.
  • missing out on social events.
  • never knowing if your pain is from moving too much or too little.
  • getting glared at for parking in the handicap spot because you don’t look handicapped.
  • a pain in the neck, and back, and butt, and ankles, and knees, and ears, and hands, etc, etc, etc…
  • NOT GOING TO DEFINE ME!IMG_3510
This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

Enbrel Injection Day

Today I received my four-weeks supply of Enbrel from Lumicera. Every four weeks I give them a call and they deliver my medication right to my door. Enbrel Delivery

The medication arrives packaged in a cooler with ice packs to keep the medication cool. IMG_2928(Enbrel is supposed to be kept refrigerated.) Lumicera will also provide me with other supplies if I need, such as travel cases for the medication, alcohol swabs, and sharps containers to dispose of my needles.

I use the pre-filled syringes, but they also offer an auto-injector pen and multi-dose vial. IMG_2933It’s up to you and your personal choice which you choose to use. I find the injector pen to be more difficult to use and more painful.

Enbrel is injected into the lower abdomen or the upper thigh area. I alternate the left and right side of my abdomen. IMG_2940

Pain wise the injection just pricks a little bit like any shot. If you leave the syringe out of the fridge for about thirty minutes to allow the Enbrel to warm up a little the shot stings less than when it is cold.

Enbrel® (etanercept) is a biologic / Tumor Necrosis Factor (TNF) blocker that affects the immune system. It is used to treat 5 inflammatory conditions. According to the Enbrel website, Enbrel is shown to be effective in about 3 out of 5 adult Ankylosing Spondylitis patients at 6 months. Clinical responses were seen at 2 weeks in 46% of patients, with 59% of patients receiving benefit within 8 weeks.

As mentioned above Enbrel is a medicine that affects your immune system which means that it can lower the ability of your immune system to fight infections.

Enbrel can cause serious side effects including: New infections or worsening of infections; hepatitis B can become active if you already have had it; nervous system problems, blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions, and autoimmune reactions.

The most common side effects include: Injection site reactions and upper respiratory infections.

For me, Enbrel has been life changing. Before starting Enbrel, I was on Methotrexate, but it made me constantly nauseous and elevated my liver levels. I’ve now been on Enbrel for about two and a half years and have mostly been able to return to normal living. I’m able to work regularly, work out, and socialize with friends and family. I occasionally still have bad days, but not nearly as frequently as I used to. I began feeling better within the first week of taking the medication, but it did not work miracles overnight. It is only within the last few months that I have felt like my old self. I was able function fairly well over the last couple years, but still had frequent bad days.

Enbrel may not work for everyone and it is not a cure. Ankylosing Spondylitis is different for everyone and the same treatment will not work for each patient. It may also stop working at which point you will need to speak to your Rheumatologist about a new treatment regimen.

For more information visit Enbrel.com

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

Does Your Rheumy Work for the Vampires Too?

The Rheumatologist's OfficeWent in for my three-month check-up with the rheumatologist today. Well, saw the nurse practitioner this time, actually. She is always so smiley and upbeat. I try not to judge her for it. I know it sounds bad, but it just makes me think, “You are not actually that happy to see me. You don’t really know me, so… take it down a couple levels.”

Of course, I’m never really in a very good mood by the time I see her, between struggles The Doctor's Scalewith the insurance company, which then turns into struggles with the receptionist, and then seeing my weight when they take me back for the exam. (Can’t I just give you a nice estimation of my weight like I do at the DMV? Haha)

Does everyone have as many troubles with their insurance company as I do? I swear every time I go to the doctor or try to refill prescriptions something is going on with my insurance that hinders whatever I am trying to get done. It’s a conspiracy!

vampire clip artBut I think the real conspiracy lies in the lab at the back of the office where they send me every visit to draw blood. Pretty sure the doctors are working for the vampires.

Now, obviously, I don’t really think that, but sometimes you just have to find a way to laugh through your appointments, especially the blood draws. I have small, deep veins that roll and unfortunately not all phlebotomists can stick me on IMG_2841the first attempt. Them digging around chasing my veins makes me want to pass out sometimes. Thankfully today she was awesome and I barely felt a thing.

The visit was good too. It was nice to say that I didn’t have any pain to complain about, and I’ve been sleeping well, exercising, working regularly. All such a change from my earlier visits where I could barely hobble into the office.

I always feel goofy and awkward when they wiggle my limbs around and poke and prod to check flexibility and sensitivity. Makes me feel like a Marionette.

The best part of my doctor’s visit though is that my Enbrel prescription got called in to Lumicera, so hopefully my delivery will arrive at the beginning of next week. Have to get back on it so that I stay feeling good!

Do you have to go check in with your rheumatologist every three months? What do you like and dislike about your visits? Do you also think your doctors are in cahoots with the vampires? Let me know in the comments!

Gentle hugs and extra spoons to you all! XoXospoonie