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EORA or YORA another RA category

Imagine my surprise when I learned about the initials YORA and EORA. YORA is an acronym for Younger Onset Rheumatoid Arthritis as is EORA for Elderly Onset Rheumatoid Arthritis. I came to a new understanding of where I am in the scheme of things.

Rheumatoid Arthritis (RA) can strike at any age from babies to the elderly. The elderly’s association with RA can be of long standing disease or it can be a new development. People who develop RA after age 60 are considered EORA. That is me.

There are some notable differences with elderly onset RA. Initial symptoms may include large joints. With younger RA  onset small joints of the hands and the feet are usually first signs of joint involvement.  The shoulder joint may be a presenting joint in older onset.  My shoulder was involved initially as was the joints in my hands, wrists, feet, elbows. Initially I was in severe pain. Older adults may have more generalized symptoms. My grip was weak. I lost weight. I couldn’t sleep because of the severity of the pain. I was nauseated and I lost my appetite. Of my labs, my ESR and my CRP were sky high. I was a mess.

Treatment for the elderly is the same as for those younger. Many studies confirm the safety of DMARDs (Disease Modifying Anti-Rheumatic Drug), including the biologics, for the elderly. I have been on methotrexate for four years. Initially, I had the side effects of nausea and diarrhea. I don’t have any side effects now. Methotrexate works best when in combination with another DMARD. I have tried all the non-biologic DMARDs. I can tolerate hydroxychloroquine. I have taken the two drugs for a long time. I have a thorough eye exam yearly to be sure my eyes are not being affected by the hydroxychloroquine. I have labs every three months to be sure I am not having any adverse reaction to the methotrexate.

I have tried infusions of three biologics. Orencia worked the longest. Rituxan did not work at all. Remicade, a TNFi, made me very sick. My doctor wants me to try Actemra next. She is adamant. She feels Actemra is safer than prednisone. I think doctors have a blind spot with regards to prednisone. I have had no side effects. My bone density is excellent. My blood sugar goes down as my prednisone dose increases.

Drugs like ibuprofen and aspirin need to be used cautiously. The NSAID (Non-Steroidal Anti-Inflammatory) class of drugs is well known for causing stomach and heart issues. It also causes kidney issues. This class of drugs, so well used in the past, has fallen out of favor with the medical community as more studies uncover the problems associated with them.

RA in the elderly is often more painful with more activity restrictions. It must be treated as thoroughly as are those with RA who are younger. I have never felt my age. I never lumped myself with the elderly or with any group. My doctor doesn’t seem to lump me either. She is giving me her best shot. I don’t mind being a EORA. Which are you? EORA or YORA?

 

 

 

 

RA Pain, Coping and mother’s advice

The New Mexican Sandias and My Roses

 

Beginning with the first symptoms of my rheumatoid arthritis (RA), I have lived in daily pain. It has been over four years. It has been a long time.

Rheumatoid arthritis is an autoimmune disease. My body is on a suicide mission to destroy the linings of  the movable joints in my body. It is a scary disease in that it is unpredictable and it is progressive. I spent the first two years with severe fatigue/malaise. And it was as bad as the pain. This malaise is caused by cytokines, products of inflammation. Cytokines circulate in my bloodstream spreading RA damage. Add that to a high level of pain and it can be overwhelming. I wake to stiff, painful joints. In the morning as I walk painfully down to the kitchen to make coffee, there are times when I have become angry and tired of it all. I start the day in pain and I end the day in pain. It is too much.

My feet are becoming deformed and I find it difficult to walk even with custom inserts and well designed shoes. Lately, my left hip has been in excruciating pain. Bending. Standing from sitting. Weight bearing. Turning in bed. It was unbearable. During a flare it feels like it is going to last forever. It usually improves. Medrol helps me a lot. Fortunately for me I have excellent bone density.

My mother told me more than one time that,” This is the way it is.” I had often thought that this expression was cruel. I believed that it never must be a certain way. It can be different. I see that she was right. Sometimes that is the way it is. RA is a reality to be lived with daily.

Inflammation is an important word in RA. Joints become inflamed. Frequently the small joints of the hands and the feet are affected first. My feet were affected first. Then my knuckles and wrists. There was a time when I could not open jars or bottles. My elbows were affected and my shoulders were severe.

RA affects both sides of the body. Frequently, many joints are affected. It is so different than osteoarthritis. Osteoarthritis (OA) is called the wear and tear arthritis. OA is not a symmetrical or a systemic disease. It can be painful, too. But it is not systemic and it will not cause your heart to fail or your lungs to be damaged like RA does.

This is afternoon for me. I sit in my living room looking out at my rose bushes. My elderberry tree is covered in white flowers behind the roses. Next are the Sandias. Lovely to see. For me it is important to keep the good things in the forefront of my mind. There is much that I enjoy every day. Yet once in a while I slip momentarily. I become angry.  I become frustrated. And then I realize that this is the way it is and I pull out my coping skills and I carry on.

Adding a second autoimmune disease to RA

I have long  appointments with my rheumatologist. She is thorough and listens to what I say. She does think out loud which may be disturbing to some. I understand where she is going and I understand she is throwing out possibilities not absolutes.  I had a number of revelations but a big one was the possibility of adding polymyalgia rheumatica to my RA diagnosis.

For the last six weeks I have been having excruciating pain in my left hip and my whole pelvic girdle. I was also having excruciating pain in my left shoulder. Life was  difficult. I had no idea what was going on. I have a protocol to increase my medrol for flares.  I did. Medrol did provide relief. Once I was done with the medrol my pain returned.

My doc listened, examined. She ordered x-rays. She mentioned the possibility of sending me to an orthopedic doc. She mentioned             polymyalgia rheumatica. Then we moved on to other issues.

Polymyalgia rheumatica affects those over 65 years. It affects the pelvic girdle and the shoulders. It includes pain in the thigh and upper arm. It is an autoimmune disease and not curable. It is manageable however. The drug of choice is corticosteroids. It is usually started around 25 mg for a month and then tapered to a dose that controls symptoms. The treatment lasts a minimum of one year and may go on for several years. Recurrence is not uncommon.

I felt relieved. It was manageable. There was a solution. Of course, one of the problems with polymyalgia rheumatica is its association with giant cell arteritis. Not good. 10% of those with polymyalgia rheumatica also have giant cell arteritis which is the inflammation of the lining of arteries particularly in the temporal arteries of the head. For now I will deal with managing what I have and be glad it is not worse.