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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.

 

Actemra as a possibility for My RA

My journey through the biologic DMARDs  began with infusions of Rituxan. I had no relief from my RA with Rituxan. Next in line were infusions of Orencia. Orencia gave me about 20% relief. At the time it was better than nothing. Orencia worked for over nine months and then stopped working. At the time I had a worse than normal flare and developed a horrible flu. Up to that point I hadn’t had a cold or a sinus infection for 3 years.

After about six weeks I was started on infusions of Remicade. Remicade has three loading doses scheduled 2 weeks apart. I completed the loading doses and then became terribly ill. I felt like I was in ‘a failure to thrive’ situation. Absolutely no energy, listless is a good word. I moved into a bad flare which overshadowed the side effects of the Remicade. I was in a bad way for over a month.

Remicade is a TNF inhibitor (TNFi). The recommended suggestion is that if a TNFi is stopped because it doesn’t work, another TNFi might be tried.  If a TNFi is stopped because of side effects, a non-TNFi should be tried next.

After my bad experiences, I was ready avoid the biologics. Medrol does save me through tough times. However, my RA is getting worse. I have a hard time walking. I have never been in remission (4 years). Wherever I have a synovial membrane in my body, it is inflamed. My tendons have joined my joints. I have a creaky body.

Fortunately, I love to read and I love to write. I can do both with RA. I have a garden. Some days working outside is very hard to do. I do it. It keeps me moving. I love my garden. I love to knit.  I  love to cook dinner for my son. Life is good in spite of RA. But it is starting to be less manageable. I have a cane. My son carries heavy things for me. Sometimes it is very hard to go shopping. So I took another look at my Doc’s last suggestion, Actemra.

I pulled out the Actemra brochure my Doc had given me. I had thought that the mode of action might work for me. Then on the cover of my brochure, I saw the following words,

Important Side Effect Information.                                                                           ACTEMRA changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people taking ACTEMRA have died from these infections.”  

This got my attention. I remembered clearly my problems with my last two biologics. I did not want to have an infection or worse. Maybe I’m not a match for Actemra.

I had histoplasmosis when my family lived in Nebraska. It is a fungal infection and affected my lungs.  I had a garden there also. I also possibly had a case of diverticulitis (according to an ER doc). ” Some people taking ACTEMRA may develop a hole in the wall of their stomach or intestines.” I don’t want to die from this.

Of course, I have to evaluate the part of the medication insert that I understand.

With 4mg/Kg:                                                                                                                                    9%  had a 70% improvement                                                                                                           24% had a 50% improvement                                                                                                               43% had a 20% improvement

With 8mg/Kg:                                                                                                                                       19% had a 70% improvement                                                                                                               37% had a 50% improvement                                                                                                         59% had a 20% improvement

So is the likelihood of a 20% improvement worth the risk of death. I don’t think so. Too bad. But the risks are too high for the limited reward. My RA is bad. I am one of the unlucky ones. I still feel life is good. So I will pass on Actemra.