ankylosing spondylitis and sceritis and a continual "flare"

2 injections of Simponi it working?  Well, I won't know until about 4 months--which is 4 injections (this is a monthly injection).  I love hearing from my rheumy, "well, we're out of options". I love hearing from the eye doc, "I'm getting worried"--of course I don't love either of these comments. 

How'd you sleep last night? Do you wake from the worst pain and wish you could just sleep? I lost hours last night, as I do most--from pain. Ankylosing spondylitis and scleritis doesn't stop, rest or sleep. My body is continually attacking itself-joy?!

You can't have a little AS, you either have it or not. The pain doesn't stop or go away. You can have more pain or less, but it's always there. Some folks call these flares--well, I've been in a flare since I was diagnosed, so I really don't believe I have flares. I just believe I have good days and bad. Here lately, there are mostly bad.

The scleritis in my eyes is what's the biggest concern right now--but, the reason that it's getting worse is because the meds for the AS isn't working. The progression of the AS is getting worse and unless it's controlled then other problems can occur.

Since I use this blog as education--here's a bit for those that don't know

Scleritis Signs and Symptoms:
Scleritis usually develops in one eye, but may affect both eyes together. The main symptoms of scleritis are pain and redness in the white part of the eye that may become severe. Other symptoms include the following:
  • Eye pain that may involve the head and face
  • Tenderness
  • Light sensitivity
  • Tearing
  • Blurred or decreased vision
  • Eye redness (due to dilated blood vessels that may make the area appear darker red and take on a bluish hue.)
Types of Scleritis:  (I wonder which I have, forgot to ask)

There are four types of scleritis:
  • Diffuse Scleritis: The most common type of scleritis, involving the front half of the sclera.
  • Nodular Scleritis: Small, tender nodules form on the sclera, representing generalized inflammation.
  • Necrotizing Scleritis: Also known as scleromalacia perforans, this type can be very serious and may result in loss of vision.
  • Posterior Scleritis: The rarest form of scleritis, involving the back part of the eye. May make the eye more susceptible to muscle problems, retinal detachment and angle closure glaucoma.
If left untreated, scleritis can lead to significant loss of vision. Scleritis is usually treated with oral anti-inflammatory medications (I'm on these). Immunosuppressive drugs are sometimes used (and these). Scleritis does not usually respond well to topical eye drop medications. Some doctors prescribe topical steroids and non-steroidal anti-inflammatories (and these). Because many cases of scleritis are associated with an underlying systemic disease (ankylosing spondylitis is the reason I got sceritis), treatment is centered around treating that disease to stop the progression of scleritis

So, see I need the simponi to work--not just for my AS, but for my sceritis eye disease. It's not just arthritis--I can't loose a few pounds and feel better--this is an autoimmune arthritis disease that also can cause other diseases and yes, even death.

Other than destroying joints--all joints not just the spine--AS can cause the following--

  • Breathing can become difficult as the upper body curves forward and the chest wall stiffens. Severe ankylosing spondylitis can also cause scarring of the lungs (pulmonary fibrosis) and an increased risk of lung infection.
  • Scarring in the eye from uncontrolled iritis/scleritis can lead to permanent visual impairment and glaucoma.  
  • In rare cases, the heart muscle can become scarred and the heart valves may become inflamed. The heart may be unable to pump properly (heart failure). The main artery leading from the heart (aorta) can also be affected by becoming inflamed and enlarged near where it leaves the heart.
  • Bowel inflammation is sometimes linked with ankylosing spondylitis.
  • The kidneys can be affected by taking medicines over a long period of time.
  • Some people who have ankylosing spondylitis for many years develop cauda equina syndrome from scarring around the nerves at the end of the spinal cord. This condition can cause loss of feeling in the saddle area of the groin and legs. It can also cause problems with bowel and bladder control.

  • Come on simponi work!  AS has my body, but not ME!


    1. Ankylosing Spondylitis causes pain and stiffness in joints of the spine. Treatments for this disorders include exercises, medication, physiotherapy. Surgery is the last option for Ankylosing Spondylitis.


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