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Mary’s Arthritis Journal May 8, 2021

I have always been amazed by those who can work through illness. I once had a friend who had a chronic leukemia. During episodes of chemo, she found that she could not sleep. Instead of watching endless Netflix, she spent her nights researching and writing a successful blog on ghost stories. She used her down time to her advantage. I am not like her. I wallow. I vegetate. My brain seems to stop working.

When my rheumatoid arthritis is sending inflammatory messengers throughout my body, when pain is attacking every moveable joint, when I have depleted my stores of coping, I retreat. My body feels sick. My research goes on hold as does my writing. My mind is stuck in a quagmire. There is only a wish to escape and a hope that there will be an end, and in that end, I will be alive again. I will be okay.

My flares are becoming something to be feared. My ankles and my toes remain swollen. It is very hard to walk. My knuckles are swollen. Its amazing how much pain can emanate from them.  Pain seeps into my wrists and then elbows. My shoulders get that old feeling of having shards of glass in them. There is more, but you get the idea. Flares are painful, exhausting, discouraging.  My RA is progressing, worsening.  As my RA progresses and worsens, the spaces between flares are dissolving. I am becoming a living, permanent flare.  No more reprieves. 

I was on methotrexate for eight years. I have been diagnosed with three cancers and had the treatment for each including radiation for breast cancer. A few years ago, I developed a severe, necrotic infection in the tissue that had been radiated. The cause was methotrexate. Black box warning number 13 for methotrexate is soft tissue necrosis.  I had to stop the methotrexate. My treatment arsenal was empty. My only relief was with Medrol which clearly has limits.   

My doc and I agreed to try abatacept again. I have been injecting it for five weeks. Abatacept offers a 20% improvement for half of the patients who have been trying it for three months. Although I will take anything I can get, the biologic, at 20%, is barely taking the edge off. But it offers the hope that at six months on abatacept, I will have the possibility of reaching 50% relief.  Hope.

Rheumatoid Arthritis Eyes

 Most of us who have had RA for a while understand that Plaquenil (hydroxychloroquine) puts us at risk for eye damage. If we do take Plaquenil, we understand that the danger of eye damage is small. That is what we seem to need to know and that is all we are told about RA and our eyes.  We are not being told that by having RA, we are at risk of having eye damage and should have our eyes checked on a regular basis.

We do know that the same inflammation that causes pain and swelling in the lining of our joints courses through our veins damaging the lining of blood vessels and our heart even when our cholesterol profile is perfect. We understand that and we try to keep ourselves heart healthy in every way that we can.

What no one mentions is that this same inflammation that affects our joint lining and affects our heart and our blood vessels also affects our eyes. This inflammation can cause permanent damage if we are not paying attention.

RA affects your sight.

Inflammation caused by RA invades the entire body including the eye. RA inflammation of the eye is common and may cause the following symptoms:  Eye redness, eye pain, eye dryness, blurred vision, dry/gritty feeling in the eyes, sensitivity to light. RA inflammation may cause mild to aggressive diseases of the eye.

Dry eyes are common with people who have RA. Using artificial tears may be necessary to keep the eyes moist and avoid infection. Eye dryness may be associated with Sjögren’s syndrome in about 20% of the cases.

Scleritis and uveitis are arthritis related eye problems.

  • Scleritis is an inflammation of the sclera, or eye wall, that causes a thinning of the eye wall usually affecting those between the ages of 40 and 70. Symptoms include redness, deep eye pain and light sensitivity. Even with mild eye trauma, scleritis may be dangerous as the thin eye wall could split open.
  • Uveitis is when the uvea, the vascular layer of tissue between the retina and the eye wall becomes inflamed. Symptoms are eye pain, light sensitivity, and blurry vision.

Some people with RA may develop glaucoma. This happens when inflammation affects the part of the eye that helps drain the nutrient rich fluid that helps keep the eye inflated.  If the eye fluid cannot drain properly eye pressure will increase and damage the optic nerve. Glaucoma has no symptoms in its early stages.  As it progresses, you may see colored halos around lights. Your vision may be blurry, and you may notice blank spots in your field of vision. Eye drop medication can help reduce the pressure. Glaucoma may also develop as a result of steroid treatment for RA.

Cataracts occurwhen the lens of the eye becomes cloudy. This condition may be caused by RA steroid use. The lens can be surgically replaced. It is a common surgery.

Rheumatoid Arthritis causes systemic inflammation in the body. Your eyes will be affected by this inflammation. Regular checkups with your eye doctor will pick up eye changes caused by the inflammation of RA.

Excerpt from my upcoming book RA and You.

Managing RA

I am an optimist. But I am also a realist. When faced with a painful situation, I sometimes  dance around the issue for a few turns. Then, painful, or not, I face whatever it is,  deal with it and then do my best to move on. Stiff upper lip and all that.

Each time I was diagnosed with a new cancer I did just that. I never once thought why me. I had the surgery, the chemo, the radiation. Suffered through it. Recovered for the most part and moved on. I felt that none of those three cancers would ever return as the treatments were brutal to my body and left nothing unaffected. My method of handling problems worked with cancer.

Then I was diagnosed with rheumatoid arthritis almost eight years ago. RA is a painful, debilitating and a  lifelong disease. It is a disease that must be dealt with daily. RA will not go away just because I am weary of living with it. It is forever.

It is not a problem to be solved. It is a reality to be managed.  I see so many others I know suffer through their chronic illnesses.  What makes managing so hard is that the suffering is not  temporary or occasional or uncommon. It is embedded into the fabric of our lives.  Managing pain. Managing energy levels. Living with complications from our diseases or from the medications used to treat them. Fear of what is coming next.

Then there are the medications for rheumatoid arthritis. These are the  DMARDs, the Disease Modifying Anti-Rheumatic Drugs. These include the popular methotrexate and hydroxychloroquine. They also include the biologics such as Humira and Actemra. All these drugs have side effects and their own sets of complications. None of these drugs offer a cure. The decision to take them is sometimes easy because a person with RA can feel desperate. The decision can be difficult. The biologics are expensive even with insurance.

And I have grown to agree with the many who say rheumatoid arthritis is a bad choice for its name. Those of us with RA do not have ‘a little arthritis’. We have a painful, systemic, autoimmune disease that is totally and painfully debilitating. It causes systemic inflammation that courses throughout the body and causes a fatigue that is exhausting.

My RA is seronegative. Seropositive RA has more bony erosions. Seronegative RA has more severe inflammation. After the first few years their courses are similar.

RA affects the joints symmetrically, right side and left. It can  inflame any or all the  synovial linings of  moveable joints, tendons, and bursae.  It is an inflammation to be feared.

Those with RA are highly likely to become work disabled. This is true today even with the newer RA drugs available.

Some think the RA biologics are the wonder drugs of our time. For some, they are. They are at least for a time. The best relief  that is possible from a biologic DMARD is 70% and that is for a small number of lucky people. So far, no medication causes complete relief. Biologics do not work at all for about a third of those with RA.  Some have 20% relief. Others have 50% relief as I did when I was on Orencia  until  it stopped working. So everyone with RA is left dealing with some of  the symptoms.

The biologics act by interfering with specific inflammation pathways. There are many inflammation pathways in your body. If your medication is not affecting the pathways being affected by RA in your body, you will not experience relief. So far RA biologic medication is an expensive crapshoot. Matching a patient to the right medication that will probably not help more than 20-50%. And yes,  I do agree 20% relief is better than none.

There are many of us who have had rheumatoid arthritis for years.  We each have our own personal experience with the disease. We have learned to do what we need to manage the rhythm of our daily RA  experience.  Managing energy levels. Managing flares.

We eventually come to understand that our RA will never go away.  RA is not a problem to  be solved. It is a disease that must be lived. Even though we struggle, we try to take  days as they come living the ebb and flow of this unpredictable disease.