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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.

Morning time/Evening time with RA

I have figured out how to reduce the morning stiffness and pain of my RA. I do two things.

  • First, I take pain medication. I wake up in the early morning to use the restroom. At that time, I take a dose of my pain medication. Before I go to bed, I put a dose in a little bowl on my night table. It is easy to access and I will know whether or not I had taken it.  Then I go back to sleep for about an hour or so. It relieves me of the pain that saturates my body in the morning. I no longer feel discouraged. I am ready for my day.
  • The second thing I do is read the paper while I have my freshly brewed Starbucks French Roast. I have time to center myself as I work out the nighttime kinks.  I read the New York Times on my Kindle. I have a cover for my Kindle that also acts a stand for it (something like a picture frame easel). This sits nicely on the arm of my bedroom sofa. All I need to do is turn the digital page with my finger as I drink my coffee. My stiffness falls away and I am ready for my day..

I know much of the  literature reads like the only time a person suffers from RA is in the morning. Mine is more generous, I simmer all day and then sometimes I get hit hard in the evening also. About eight or nine maybe. All my affected joints ache. It is wearing.  The pain medicine does not seem to help in the same way it does in the morning. This is persistent pain that also requires distraction. I rub  diclofenac(Voltaren)  gel into all the painful joints. It takes up to ten minutes to absorb.  Keeps me occupied. It does help and it helps with the swelling. I also distract myself with a favorite television program or a good book. Those of us with RA are a creative bunch.

There is an increasing body of research on rheumatoid arthritis pain and on the inflammation of RA during the night. Nocturnal pain is more characteristic of those who have RA and less so for  those with other inflammatory joint disorders. Nighttime pain is associated with more joint tenderness, more swollen joints, and elevated inflammatory markers. Simply said those with nocturnal pain have more active disease(a remark by Dr. Bernadette Rojkovich, rheumatologist, Budapest).

In healthy people the endocrine system produces a supply of cortisol in the middle of the night because in healthy people their inflammatory systems are most active at night. This enables the healthy body to rid itself of pathogens trying to get a foothold in the body. Nighttime is a good time for this as there is more energy available with muscle and digestion activity being less active.

 Those with RA do not have an endocrine system that is working properly.  It fails to make the normal production  of  cortisol  and so it also fails to make the cortisol needed for the  additional nighttime inflammation.

Many are now recommending that prednisone be taken at nighttime instead of in the morning. There is also a delayed release form of prednisone to target what would be the normal release of cortisol in the night. It costs more but it provides a targeted approach.

I take 4mg Medrol in the morning and 4mg Medrol in the evening. It is the low dose that I see providing me with the necessary glucocorticoids my own adrenals fail to produce.

the joy of roses

RA flares without the biologics

I am living through my days without methotrexate. I am not on any of the biologics. Hydroxychloroquine is no help and has been set aside. At first, I felt left alone in the world without armor.  Would a flare become so severe that I would spiral down and down into total pain and immobility as I had in 2013? That was my fear.

For years, a low level of pain humming in the background has kept me company. I have a degenerating spine. There are long fancy words for what has attacked my spine. Plainly said, I have a bad back. I could say I inherited it  from my dad. I am accustomed to pain. Now I have RA.

Over the years I have learned to ignore the humming pain. However, there is a tipping point after the start of a flare where something needs to be done.

As a flare starts  pain grows louder in the small joints in my feet. The rest of my feet ache. My left ankle develops sharp pain making walking difficult. My knuckles ache and my elbows become inflamed.  All these joints scream their desire for relief. Together they are loud. When this starts to happen, I not only feel bad, but I feel discouraged. Without intervention, the flare will get worse. This has been my story for seven years.

In 2018 when I was in chemo and off methotrexate, I would use a Medrol dose pack for flares. It helped get me through. I have good bone density. I have had no infections.  So, in reluctant agreement from my RA doc, I take low dose Medrol daily and then a boost of a Medrol dose pack for flares. It works for me.

Medrol is also known to reduce RA damage over time. I feel covered. I am one of those unlucky individuals who are in the minority of people who have serious complications from drugs. Tamoxifen caused a rare uterine cancer that required drastic treatment. Orencia caused a severe flulike infection that I never had before or since. Methotrexate caused a necrosis  to radiated breast tissue which required ten months of treatment.

I am reluctant to try any more biologics as I believe I will probably have one of their many serious complications. Most people will not have these problems.

This is my current regime. It works for me and my life goes on. I have just finished reading Lifespan by David Sinclair. He is a world renown genetic scientist. He paints a hopeful picture of possibilities for us humans. We can live much longer, and we can live healthier. Sounds good.

Last night I made a fragrant vegetable soup with chicken added for dinner. Now I am munching on an organic apple as I write. Good habits. Tasty habits.

At this point in time, I am good. I have had enough crises in my life to appreciate the good. Problems can be solved, or they can be managed. Those of us who have RA or who have been  treated for cancer understand.  We had gone through tremendous hardship and we come out knowing that life still can be good.