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Seven year anniversary and infection

It was seven years ago this month. I was acutely ill with my first encounter of rheumatoid arthritis. My illness had not been given a name yet. A week before that I had seen the ER doc who started me on prednisone and who was  sending me to the rheumatologist that I would see in about another week. I had very little sleep. A few hours a night at most. I was in excruciating pain. Life was not good.

I can look back with a sense of relief. I no longer have the kind of pain that made me think I had broken glass shards in my joints. It took several years after my diagnosis for my RA to settle down. I never went into remission. My inflammation has always simmered. Methotrexate was my base. I finally settled into 25 mg subq once a week. It helped. After a few years my pain was never quite the same as it was originally. My feet became central to my discomfort. Custom orthotics and Dr Comfort shoes made a big difference. My feet became deformed. I developed neuropathy. I walk with a cane.

I was not given a biologic DMARD at the time because I developed two cancers the same year as my RA. A few years ago, I was started first on Rituxan and then later on Orencia. The Orencia helped for  a year, I was just getting started on Actemra when I developed the third cancer. I was just getting started on Actemra a second time when I developed an abscess in necrotic breast tissue due to radiation. The infection has continued on through surgery and now a month following surgery, There will be no more Actemra. The surgeon had me stop the methotrexate.

I have been off methotrexate for about three weeks. This is the longest since I started it. I’m not sure how things will work out. I still have the infection, the irrigations, the draining crud. My joints continue to simmer and burn. But so far, I have no feeling of glass in the joints or the extreme malaise that comes with it. Guess I will just wait and see what happens next.

Surviving Food, Nutrition and RA

This is the first few pages of the nutrition section in my up coming book Self-Managing Rheumatoid Arthritis.

Surviving Food, Nutrition and RA

We all know that good nutrition is an important part of staying healthy. Most of us have limited knowledge on what constitutes eating well. Our problems are many when we try to figure this out. What is good nutrition? How does it fit into our family style? How do we manage when we have pain and fatigue? How do we manage when our budgets are limited?

 To complicate matters, each of us is unique both in body make-up and in our responses to our environment. We need diets or food plans that work for us individually. It is a given that a good diet will help you manage your RA. Good food will help. You might already realize your particular dietary needs.

Some will do better on a vegetarian diet. Some will do better without dairy. Many will thrive on a Mediterranean diet or an anti-inflammatory diet. Some are gluten intolerant. Some will be coping with food allergies. The challenge is to find the diet that works for you as an individual. The challenge is to let yourself choose a diet that works for your body. Trial and error works but first you will need to decide what foods you are willing to include in your plan and establish an approach that will work for you.

All of us will do better if we avoid empty calorie food, processed food, large amounts of sugary or white flour food. We will do better when  we add more fruits and vegetables.

A common but little-known complication of RA is malnutrition.  In fact, it is estimated that more than 40% of rheumatoid arthritis patients are malnourished.  This doesn’t mean that you are skinny. It means that your body is not getting the nutrients you need to be healthy. RA patients are living in a constant state of inflammation. The increased production of cytokines increases resting metabolism and protein breakdown. People with RA need a reliable protein source daily.  

Another part of our problem is that RA can cause such overwhelming fatigue and pain that it is difficult to muster the energy to prepare and then eat a meal. Just to make a sandwich requires unwrapping the bread, putting the slices on a plate, wrapping the bread bag back up, opening containers and adding spreads, meat or veggies, closing containers, putting them away. Sitting down at the table with your sandwich and eating it. Sounds easy enough. But if you are so wiped out by the extreme fatigue of RA and your hands are swollen and ache deeply in a way that is hard to explain, making a sandwich can be an overwhelming task. It is a task that can be skipped. And it frequently is.

Yet we know that RA is a lifetime experience and we need to eat despite our infirmities.

For those with chronic illness, nutrition is especially important. Frequently, someone with RA will likely have other issues such as diabetes or hypertension or another autoimmune disease. Such issues must be taken into consideration.

Those with RA have a variety of lifestyles. Some live alone. Some live with spouses. Some live with a family member like I do. There are those raising children. There are those caring for elderly parents. For each of these family combinations, we have responsibilities toward providing healthy meals. The needs of our family members don’t go away because we have RA.

Income is an issue. Many of us have limited incomes. With RA, medication is a necessity, and it is expensive. Food expense is a variable especially when a person lives alone. The food allowance may be the part of our budget that is reduced when medication costs are increased. Nutrition suffers.

Unable to perform routine activities of daily living, cooking and shopping. Pain in movement of the hands. Lack of energy in getting to the store. Mouth is dry, food is too hard to chew. Jaw joints have RA and it is painful to chew. RA creates a mountain of obstacles  to overcome.

Additionally, it is difficult to rally the energy to go to the grocery store, get out of the car, walk in, select items, pay for them, go back to the car, put the groceries in, get in yourself, drive home, carry the groceries inside, and put them away. Exhausting thought. Nap time.

How do you survive all this?

I think it starts with rebooting our approach to managing. It starts with learning the essentials of what do we need to know about eating well. It starts with learning how can we manage without collapsing on the kitchen floor. It starts with learning the shortcuts. It starts with the reality of where we are. It starts with learning to manage with what we have to work with.

We all know that we need protein. Plan to have it. A supply of boiled eggs in the frig. Cottage cheese maybe. Pick up a rotisserie chicken at the grocery. It is cheaper than fast food. It is a good source of protein. We need vegetables. Pick up a packaged salad or a pound of carrots. A frozen package of carrots and peas at Smiths is $1 and takes 6 minutes in the microwave. Life can be very good. Food doesn’t have to be expensive. And it doesn’t have to be a lot of work.

Choose a diet style that appeals to you

Eat fruits and vegetables and protein daily. Eat real food. Avoid processed food.

This is the mantra. It means eating fruit and vegetables. Fruit is sweet and takes care of your sweet tooth. Vegetables are moist and taste good in a dry mouth. There are many sources protein from chicken to peanut butter. Fast food and frozen pizza are empty calories and have no nutritional value. When someone chooses one of the following diets and subsequently sticks with it, it is probably a diet that agrees with the individual’s body type. All these diets can be healthy. Choose wisely.

 to be continued…

Infection and off methotrexate

I stopped taking Actemra. I had only two doses this time. Last week I stopped taking methotrexate. I had been on it since 2013. All this was at  a suggestion from my oncologist who was helping me battle a severe breast infection. The infection started in October 2019. I went to a wound clinic for a month. I had surgery to debride necrotic, radiated breast tissue 13 December.

Then the infection returned. Perhaps it had never left. I also developed a severe cellulitis. The cellulitis covered my entire breast or what was left of it. Now the cellulitis is down to a couple of inches. The whole thing was caused by  the radiation treatment that I had for breast cancer in 2013. The radiated tissue became necrotic and infected. It is not uncommon. I wonder what part my RA drugs played in this long standing dilemma. This infection has gone on for three months.

I do know that methotrexate should be stopped while a person is on an antibiotic. Methotrexate should not be used at the same time a person is prescribed Bactrim.

This will be the longest time that I have been off a DMARD. . Maybe this is a good thing. I might be fine without it. My RA has always felt systemic. When I am flaring, my whole body feels sick. I have many joints that are inflamed at a same time. Too many to count. As you can see I am a little nervous about this.

I have not had an infection associated with taking RA drugs except the time I developed a severe flu when I had been on Orencia for a year.

I am feeling better. I still irrigate my wound and have since October, so it is part of my routine. I will be glad when it is done. I do see stopping methotrexate as the grand experiment to see if I can manage my RA without drugs.