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RA Spirit

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RA Spirit in 2016

My podiatrist thinks people with RA have an amazing positive attitude. He says it is unique to his patients with RA. I can understand that. We have no choice but to manage our disease. So we do.

We plod along solving our issues for pain and all the issues large scale damage to our bodies’ joints give us.   If we fail to pick up the responsibility, even more severe pain and disability are but steps away. We figure out how to manage grueling pain, random flares that send us to Medrol packs and heavy pain medications. Limping around on feet that feel like numb bricks. Energy that seeps away until we are but rag dolls wishing for rest. Learning to manage a painful existence isn’t easy. Those of us with RA just do it.

We are experts on hot packs, splints, braces, pacing, and on it goes.  Pacing works well for me. I manage a lot following the concept.  Generally, it is working for short stints interspersed with resting activities.

My pain medication is on a schedule. Works better that way. I wake up in pain and I go to bed in pain and have pain pretty much all day.  The intensity varies. I think every joint in my body has been affected by RA. I have medicine for RA associated nerve damage. I have medicine for pervasive pain. I have medication for the inflammation that is the big enemy.

Today I am making stuffed peppers. Green peppers are at a once-a-year sale 3 for $1. Excellent ground beef is also on sale. So, my once-a-year effort to make stuffed peppers is timely. It helps that I have someone with a healthy, appreciative appetite to cook for. The crock pot is full of stuffed peppers simmering. Next, I will have a coffee and cookie break while reading my Baldacci novel. Then I will clean up my kitchen and wander outside to my garden.

To eat nightshades or not.

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Nightshades form a group of 3000 plants. Some of which are poisonous. We normally eat a small group of them that are not considered poisonous. In fact, they are nutritious powerhouses. Night shades include tomatoes, potatoes (not sweet potatoes or yams), eggplant, all peppers, tomatillos, paprika, cayenne, chili pepper and chilies. The group of nightshades that we  eat are considered safe and are ingested daily by many of the world’s population.

There are some individuals who do not tolerate the nightshades. Like those who have lactose or gluten intolerance, those who do not tolerate the nightshades should eliminate them from their diet. If you suspect that you have a nightshade intolerance, eliminate them from your diet. If you start feeling better, you know what the culprit is and what to avoid in the future.

Food sensitivity and RA

30-40% of people with RA are helped by using an elimination diet to determine food sensitivities.80 During an elimination diet, a particular suspicious food or foods are  eliminated from the diet for about a month. Reintroducing the foods individually will see which foods cause increased joint inflammation. Eliminating the offending food or foods frequently improves RA symptoms. Milk and eggs are the biggest offenders.81 Those with RA are frequently sensitive to several foods.

Excerpt from

My Rheumatoid Arthritis Handbook

October

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If you have been reading my articles lately, you might think I have been vacillating about the effectiveness of Actemra. You  would be right. I have vacillated about its effectiveness. Probably because I really wanted this drug to work for me. Historically, my flares always seem to roll from one to another without much in between. I have spent a lot of time in very bad flares where the pain is so severe it is hard to move. A body full to the brim with inflammation that leaves me depleted of energy. That is why I could see the Actemra working. I had a few extra days between flares. I did have some relief.

But those days are disappearing. More bouts of illness with fewer days in between. I will continue to take it until there is no value left. Actemra was the last of the  RA drugs to try. My doc brought up the idea of using Imuran. I am reluctant to try it. We will see.

I have had week thirteen at the wound clinic. The wound is shrinking even though the nurses said  it looked too wet.  They used silver nitrate on it this time. They triple wrapped it. I am good for another week.

We sent in our absentee ballots. These elections are important to everyone. Voter turnout for Republicans as well as Democrat is already a record. New Mexico is mostly Democrat. Everyone is encouraged to vote. Voting is made easy.

Halloween is next. My son ordered $25 worth of candy. Hopefully, we get some trick or treaters.  

Getting confusing RA messages on the internet

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Maneuvering the tangled jungle of internet information searching for rheumatoid arthritis (RA) knowledge can be frustrating. Poorly explained information can be misleading and confusing. And that is on sites that are reputable. Dumbing down information just doesn’t work. Generalities don’t either.

The number one problem is mixing symptoms of a disease with complications of a disease.

  • Rheumatoid arthritis is a symmetrical disease. When you have pain in your right hand, you will eventually have pain in your left hand too. Both sides are involved.
  • RA sufferers endure stiff, painful joints especially in the morning. Symptoms stay with you longer than with other forms of arthritis.
  • Fatigue is severe and overwhelming. And it has nothing to do with how much sleep you have had.
  • RA is a progressive disease. You may start with one joint but soon enough you have multiple, symmetrical joints involved.
  • Joints become swollen and tender. Not necessarily red and hot.
  • Rheumatoid nodules don’t usually show up early in disease. They develop in established disease especially in those with seropositive disease.

The list of RA complications is a long one. Rheumatoid arthritis is an inflammatory disease. Inflammation consumes the body and creates a havoc that is difficult to control.

  • Heart disease and atherosclerosis are number one complications.
  • Interstitial lung disease starts quietly, grows and becomes deadly.
  • RA causes a variety of eye diseases. The list goes on.
  • Depression is a common complication of rheumatoid arthritis. What causes the depression? The chemical changes in the body caused by inflammation plus the difficulty of managing the painful symptoms combine to be powerful reasons for depression. In addition there are genetic links between RA and depression.
  • RA drugs are potent. They have their own set of side effects and complications. Life threatening infections are common with depressed immune systems of RA.  After being on methotrexate for five years, I developed a severe infection in radiated breast tissue. It was black box warning number thirteen for methotrexate.  It took ten months to heal.

The American College of Rheumatology (ACR) is considered the authority for rheumatoid arthritis in the USA. They develop the diagnosis and treatment criteria for RA to guide doctors in their decision-making process. Their patient information site is worth reviewing.

Johns Hopkins Arthritis Center is one of my favorites. Check out their patient information site.

WEB MD Arthritis and Creaky Joints both have web sites and newsletters with helpful tips on managing daily life with rheumatoid arthritis.

The RA drug companies have their own web sites. These sites are flashy, but they do have useful information. They clearly state the complications of their drugs. And admit that some people die from complications of their drug. If you are on a RA drug, you would be wise to review the drug site and determine for yourself if you feel the benefit outweighs the risks.

The internet is an excellent source of rheumatoid arthritis information.  It is much better to search the useful sites than to limit yourself to the few statements made by your rheumatologist in your thirty-minute appointment. Combining both will enable you to make the right decisions for your body.

Week Twelve at the Wound Clinic

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Wound clinic week twelve. Last week the  neg pressure machine was stopped to  see how I would do without it.  I did well for the week so the machine  is no longer needed. My wound is roughly seven inches by two inches now. It  still looks like raw meat. It definitely hurts when the old dressing is removed.

It is replaced with slim layers of white substances placed carefully on the wound. Collagen. Blood vessel building.  The first looked like a small sheet of paper that the nurse tore to cover the wound completely. Next a mesh Collagen.  Topped with a Hydro Fera  Classic Blue Antibacterial Foam Dressing. She wrapped the entire leg with three layers.  The first being a soft white felt and the last looking similar to an ace bandage,  Good for another week.  It is a big relief to be done with the machine and all the tubing. I never really got used to it.

I am feeling less dependent on the nurses. My wound is something I could manage myself if needed. Before now it was too complicated a wound. Progress.

It will still be another month or two.  Wounds are tough to manage. My nurses are good at their job.

My shoulder joints are damaged as well as my knuckles and wrists. So it is painful to push the walker (four wheel) through the hospital. I have the new deluxe model with red trim. So, I’m lucky with that. My feet are numb, and my ankle joints are unstable especially the left.  It is still less exhausting than walking with my old cane. Safer, too.

I am beginning to see that this is my lot in life. I have spent all these weeks coping with tubing, cords, a fussy machine and my wound. It has taken my attention away from my failing joints. Maybe that is a good thing.

Over the course of my three cancers, I read Siddhartha Mukherjee’s book,  The Emperor of all Maladies A Biography of Cancer twice. The ending was always the same. Although there have been many strides in cancer care, cancer still kills and always will.

To that I might add the following: Although there have been many strides in the care of rheumatoid arthritis, it still is a painful, disabling disease.

Accepting the RA Drug Companies

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There are certainties in our lives. We accept them. We usually don’t complain about them as we understand they are a certainty. Complaining would be a waste of time. There are certainties in the medical world many of us have come to live with. We know, for instance, that the most important driving force for drug companies is profit.

The companies that make our rheumatoid arthritis drugs are successful at this. They make billions on these drugs. The companies selling drugs for the autoimmune diseases have found the golden goose.

Why would they ever want to find a cure for rheumatoid arthritis when they can sell us expensive drugs for 20-30 years of our lives?

  • The drug companies do not want to find a cure for our autoimmune diseases.

The drug companies are on the fence about being able to determine the effectiveness of a drug for a particular individual. Why would they care?

  • The drug companies do not want to have their market limited by a determination that their drug will not work for some people. They would rather have you try them all.

The autoimmune drugs are dangerous and even fatal for some who take them. The drug companies admit as much in their literature.

  • Paying a few million for each wrongful death suit is a small price to pay for the gigantic profits drug companies make.

The drug companies deserve their profits because they did the research.

  • The RA Drug companies’ profits are in the billions. Actemra was developed by a Japanese scientist for a Japanese firm. They were not subsidized by our government.

It is time for us to stop rehashing these issues. I am on Actemra. I know it could kill me. I take it because it helps. I take it because I cannot bear living in the constant flare I was living.  I don’t care about drug company motives. I know them. I just need relief.

I know I might sound harsh to some. But I feel we need to accept where we are at. We are luckier than those who came before us. They suffered an excruciatingly painful life. Deformed. Hopeless. We do have medications that help. Some are not expensive. The ones that are expensive are accessible for many. I pay $11 a month for my Actemra at the VA. Many drug companies have coupons for those not on Medicare, government or VA programs. There is Medicaid. There are other financial assistance programs.

When my rheumatologist worked in the local Presbyterian Hospital system, the co-pay for my biologic  was $300. 00 a month. However, my Doc ordered the biologic by infusion which my insurance plan paid. It is common so you might check it out.

We have a challenging disease and we do need to vent. But we need to be careful our venting doesn’t displace managing our disease.

Vitamin D and RA

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Yesterday was week ten at the wound clinic. I am beginning to see the changes. The jagged wound had gone from nine inches to seven inches. There is still too much drainage. I will have my negative pressure machine at least another week.

Nutrition is important when a person has a wound. I am taking a protein drink daily to help my healing. Nutrition is also important for those with rheumatoid arthritis. Vitamin D may be deficient in those with RA.

Vitamin D                                                              

Vitamin D was once an undervalued nutrient. Now it is considered important, even vital, to many body functions. It is similar in structure to a steroid. Vitamin D helps bones absorb calcium. It is involved in the dynamics of muscle movement, communication between nerves and in fighting inflammation.  

  • Deficiencies are common in those who have RA, diabetes mellitus type one and multiple sclerosis.19   Deficiencies may cause worsening pain, depression, fatigue, osteoporosis, and difficulty concentrating.
  • Corticosteroids, such as prednisone, can reduce calcium absorption and impair vitamin D absorption.
  • Hydroxychloquine (Plaquenil) and immunosuppressants are also linked to malabsorption of vitamin D.
  • RA may affect the body’s ability to absorb vitamin D from the foods we eat. Doctors frequently order a blood test that determines your body’s level of vitamin D and will frequently suggest a supplement.
  • Vitamin D levels will be improved with up to 30 minutes a day of sunshine without sunscreen. Vitamin D may be found in salmon, fish liver oils, fortified milk, and eggs. Usually those with RA will need more vitamin D than will be gained by foods and extra sunshine. A supplement will be helpful. Check with your doctor.

Excerpt from My Rheumatoid Arthritis Manual

RA Paths and Complications

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I just read an old post from 2016. I was starting IV Rituxan. Hopefully. I said I felt like I had been in a constant flare for three years. It made me think about others with rheumatoid arthritis and the unique paths that RA takes.

The Arthritis Foundation has said those who start the biologics early in their course of treatment fare better long term than those who haven’t. I started the biologics about three years into my diagnosis. The delay was caused by my diagnosis of two cancers at the same time I was diagnosed with RA. My rheumatologist later regretted the decision.

My RA was also diagnosed when I was older. Symptoms are more severe for elderly onset rheumatoid arthritis (EORA). It’s almost like mother nature is trying to play catchup.

I see my particular RA as a death by a thousand cuts. Debilitating frequent flares where the biologics never help more than fifty percent. Rheumatoid arthritis comes in many flavors. Those finding complete relief from the medical menu are lucky.  The rest of us  take care of ourselves as best we can.

Fortunately for me, I am not in the 10% of those with RA who have life threatening complications from RA. Those are the poor souls who develop fatal diseases like interstitial lung disease, heart disease, and blood vessels ravaged by atherosclerosis. Severe infections.  And a lot of time spent in the hospital.

The increased rate of cardiovascular disease (CVD) in those

with RA is caused in part by accelerated atherosclerosis

(Hardening of the arteries)

due to the chronic inflammation of RA.

Atherosclerosis is

the most common cardiovascular manifestation in RA.

Inflammation is bad for the body. It causes damage.

Early aggressive treatment for RA may reduce the inflammatory process

and reduce the number of deaths due to atherosclerosis.

Excerpt,

My Rheumatoid Arthritis Handbook

Although I didn’t start the biologics until three years in, my RA was diagnosed fairly quickly. I was started on methotrexate right away which helped fifty percent. Early treatment will slow progression.  I was aware of the damage constant inflammation can do to the body. So, I saw medical treatment as important.

I am lucky to be partners with my RA Doc. I don’t always agree with her, but she has seen me through many hard times. I am lucky to have her. It is difficult to manage rheumatoid arthritis without good medical help whether a rheumatologist or a well-informed primary.

why take the RA Biologics

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I finally had my labs drawn for my rheumatologist. Routine labs are important to monitor the effects of RA drugs on the body. How is your liver doing? Kidneys? Inflammation markers? Blood count? With Actemra checking cholesterol levels are important also. Actemra can elevate cholesterol levels. Labs are important.

I am still on the fence about Actemra. Probably because it is working over 50% of the time on the one hand. And also because it can cause irreparable harm to my liver on the other. This indecision makes these labs important. My liver enzymes were elevated for the first time in July. If they are still elevated or if  they continue to rise, I will need to stop Actemra.

A person who does not have RA or has not lived in endless unrelieved flares would consider taking a dangerous drug fool hearty. They cannot envision a choice between a dangerous drug or constant and endless pain and fatigue. I can. Many others can. If you have RA, you probably can or you will in the future.

There is more. Besides the pain and the fatigue there is the chronic inflammation throughout your RA body. This inflammation is toxic and can cause endless bodily harm all by itself. RA causes havoc in a patient’s blood vessels. RA patients die from heart disease.

When I had my last cancer, I spent the summer in chemotherapy. The drugs were toxic. I lost my hair and felt depleted for a long time. I never questioned taking the drugs. I knew that my cancer was a killer, and I needed the drugs to survive.

The RA biologics are toxic also. Yet we do take them. We take them for the same reason we take chemo. We take them to survive. We take them to slow the progressive destruction of our bodies.

RA fatigue and Pacing

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A profound feeling of no energy plus nagging aching pain

that turns into sharp pain when joints are moved.

Pain and loss of energy are the classic symptoms of RA. Fatigue-like energy loss is caused by inflammation in the body. No amount of rest will relieve it.  Cytokines, chemicals produced by the inflammation process, are a major factor. As inflammation is reduced with RA DMARDs, such as methotrexate and the biologics, the overwhelming fatigue  may also be reduced.

Sometimes the lack of energy seems like a permanent fixture in our life. Those of us who have few commitments can head for the couch with pillows, heating pad, and chocolate for the duration. Then we can happily carry-on when this flare is over. It works.

Then there are the rest of us. We have work commitments, young children, older children who need to be carpooled to soccer or tutors, husbands and elderly parents that need to be fed, business deadlines to meet. And on it goes. Time out is a luxury we don’t have.

Many have come up with concepts on how to manage this chronic condition plaguing those of us with autoimmune diseases. I can never remember them. I simply use the technique of pacing. Old. Tried and true.

For example, today we made a trip to Costco. I like to push the cart as it helps keep my arms strong. I am tired when we get home.  I refrigerate or freeze those items that need immediate attention. Then I sit down for a while with a cup of coffee and read.

I am currently reading a Pendergast story by Preston and Child. They are marvelous writers and Pendergast is a favorite character who has introduced me to many new concepts over the years.

I return to the kitchen and put away other items. But my pacing isn’t limited to managing groceries. I use pacing when I cook, do my laundry and even dress. Short bursts of activity followed by a rest.

I think we all do this to some degree. A little change in our activity level. We just need it to be deliberate when we have RA.

When we are unable to find a solution for our severe RA fatigue, it is easy to slide into a feeling where we are discouraged. It is easy to become depressed. It happens when we feel we are no longer able to cope with the demands of our life.

Pacing is one technique to add to our toolbox. It is something to practice while knowing flares will eventually pass at least for a while.  Yes, we have a miserable chronic disease. One idea will not solve our problems. But one idea will ease our way. And if we can patch together enough ideas, our lives will become hopeful, and we can carry on.