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My RA book

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I have started working on my book again. Since I am inclined to reference my own book when I am writing a rheumatoid arthritis article, it is probably time to finish it and have it published.  It is good and achieves the original purpose.

I have had RA for eight years. During those years I have had soft tissue necrosis in my radiated breast caused by methotrexate.  Soft tissue necrosis is the thirteenth black box warning for methotrexate. I spent ten months in treatment. No more methotrexate.

The year before I had my third cancer which was traumatic. Then it  took a long time for my hair to start growing back. Lucky for me my grey hair was mostly gone and still is.

As my life is shared with RA, I have those moments where I am so fatigued, I can’t stand it. I have moments when I go to bed in pain and then I wake in pain. I feel angry and frustrated. My thought is I can’t take it anymore, but I realize deep down that I will.

RA is a chronic disease. It is disabling. I use a cane because my feet are numb and my balance uncertain. I no longer drive my mini cooper for the same reason.

Over the eight years, I have learned that RA is more than seeing my doc quarterly and taking my RA drugs. For a third of us, RA biologics don’t work at all. For many more there are serious side effects. 

Some drugs are prohibitive with some comorbidities. After three cancers, I can’t take the INF inhibiters as they can cause cancer.

Actemra is risky. I have has histoplasmosis so risk recurrence in a deadly form. I have also had diverticulitis and would risk ruptured intestines and sepsis.

Lucky for me Orencia has fewer complications and is working for the time being.

What all this means is that there are many with RA who have no treatment. That in turns mean they will have joint damage and complications associated with untreated RA.

So, it also means that since RA drugs don’t work for so many, there has to be another answer. My book is slowly coming together as my experience broadens and I understand the full ramifications of the diagnosis, rheumatoid arthritis.

Anakinra for RA

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The last of our biologic medications used for rheumatoid arthritis is an interleukin-1 receptor antagonist called Anakinra. It is a targeted biologic depressing a specific protein in the body’s protective inflammatory process. Anakinra, brand name Kineret, was approved for rheumatoid arthritis use in 2001. It is manufactured by Swedish Orphan  Biovitrum AB.

In clinical studies, 38 to 43% patients reached an ACR20* at 6 months. 11 to 19%  reached an ACR50  at six months. 1 to 6% reached an ACR70 at six months. Although it isn’t as effective as some of the other RA biologics, Anakinra  becomes useful for people who do not tolerate other biologics.

Anakinra is taken daily. The dose is 100 mg injection under the skin. It is sold in single use syringes. It must be kept refrigerated until 30 minutes before use.  

Serious side effects may include

  • serious infections such as pneumonia
  • worsening RA symptoms
  • allergic reactions ranging from anaphylactic shock to milder allergic reaction.

Common side effects

  • The most common side effect is injection site reaction including redness,  inflammation and pain. This localized effect lasts up to 21 days and usually subsides.
  • A person on Anakinra may have flu symptoms, headaches, and increased blood cholesterol.

Pregnancy and lactation

Pregnant women or women who were nursing were not included in the initial clinical studies of Anakinra. The safety of Anakinra for pregnant or nursing women is not known.

*Remember ACR is American College of Rheumatology. The ACR20, ACR50, ACR70 are specific scores used to determine the effectiveness of RA drugs.  ACR20 means that an RA drug has a 20% effectiveness, ACR50 has an 50% effectiveness, and ACR70 means a drug has a 70% effectiveness.

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Memory Palace for those precious memories

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I’m sure that you have heard how helpful a memory palace can be.   Generally, a memory palace is a system for remembering information.  It is a very special system and can be used in a variety of ways.

It is an excellent way to store all your favorite memories, so you know where they are located.  It is a place to visit when you want to feel good.  The memory of a feeling, the feel of a breeze on your cheek. The smell of the fresh morning air. Hugging your chubby baby. Hearing your favorite guy laugh. The good feelings of friends and family happy together. Happy carefree times with children. Valuable memories. It can be memories of favorite books, movies maybe.

A memory palace can be anything. Mine is a comfortable old white house with a wraparound porch. An old-fashioned wooden screen door. Hardwood floors. Library where many of my memories are stored. A kitchen. Back porch and trees.   I can add rooms, but I do think mood more than specifics. I can go instantly into the library, or I can leisurely enter the house.

My purpose in building a memory palace is to have  all the favorite memories I love in special places in my mind so that when I am very sick and not able to do a lot or I just want to feel good, I can go into my mind,  locate my palace, climb the short steps to the porch, check out the flowers on a nearby table, open the screen door and walk down the hall and  into the library where I have stored my precious memories on the shelves.  I take down a favorite, sit in a cozy chair and revisit the memory. So very nice. It is mine. Yours will be yours. It can be any way you want it to be.  Try making one.

This memory palace is for all the good memories no matter the size. There is plenty of room for adding new memories and for adding memories lost but found again.

Behind the scenes of RA medication

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Rheumatoid Arthritis treatment centers on a collection of medications whose action is to depress the immune system. The body’s immune system is complex and includes many proteins that influence the inflammation process.

  • Each of the  RA biologic medications depress a specific protein directly. Presently the only way to determine if a targeted biologic affects a patient’s  problem protein is to try it. Those who have a successful match find the process well worth it. Those with no luck will hopefully get luck and reach success with a different biologic.

The chemically created RA drugs such as methotrexate affect the immune system in a more general way. Some of which are not really understood.

In 1760 Daniel Bernoulli, a mathematician working at the University of Basil in Switzerland, was the first to calculate risk/reward statistics regarding medical treatment. His subject was smallpox inoculations. The risk was the rare situation where the inoculation would cause a fatal case of smallpox. The reward of mass inoculation was that the individual lifespan would increase by 3 1/2 years. He mathematically determined the benefit of smallpox inoculations.

  • So that is how it is done with medications today. Is the reward worth the risk for the given population? The rheumatoid arthritis biologic medications clearly demonstrate this practice. Patients do die as a result of the biologics. And their death is caused by a medication prescribed for a disease that isn’t usually fatal.

 However, patients determine the risk is worth having the relief from symptoms and relief from permanent disability. Sometimes their doctors do not explain the risks in a clear manner. They fear frightening the patient.  Also, the FDA has determined that this risk is worth it. That is why these drugs have been approved. More than one RA patient has said that they would eat poison if it would relieve their symptoms.  RA symptoms are that incapacitating.

RA Mojo

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My mojo  means that I have creative energy and an optimistic outlook. When I  have those things, I am good to go. I can write. I can read complex articles. I am living in a good space. Happy.

Learning you have a a diagnosis of rheumatoid arthritis,

starts you on a journey of a lifetime.

When I was diagnosed with RA, I read a wonderful book that proved to be a guide for me on my journey. One of the things I came to understand was that I was in charge of me and I was in charge of managing my own RA. My responsibility. It is easier than it seems.

It is important to understand your rheumatoid arthritis and it is important to understand how it affects you. To be knowledgeable about your disease process is one part of learning how to manage your life with it. As you already know, you are forever wed to RA and to your brand of it. Acceptance is an important step in the process.

RA is a lifelong disease and it is unique to each person. At the same time, RA sufferers have many characteristics in common. Usually there is symmetry of joint involvement. Pain is also a common symptom. Disease progression may vary. It is a disease that is characterized by individual profiles and it is that individual uniqueness of rheumatoid arthritis that makes it hard to treat and harder to live with.

In the article, Diagnosis and Management of Rheumatoid Arthritis by Dr Rindfleisch and Dr Miller there is a brief description of how RA affects the joint.  The quote reminds us of the deeply serious nature of the disease.

Joint damage in rheumatoid arthritis begins with the proliferation of synovial macrophages and fibroblasts after a triggering incident, possibly autoimmune or infectious… Overtime, inflamed synovial tissue begins to grow irregularly, forming invasive pannus tissue. Pannus invades and destroys cartilage and bone. Multiple cytokines, interleukin’s, proteinases, and growth factors are released causing further joint destruction and the development of systemic complications.

Symptoms of disease versus complications

One of the reasons WEB information about disease is confusing and scary is because characteristics of disease and complications of disease are all jumbled together. So you will see painful joints lumped with  joint destruction and lung and heart disease.  Heart and lung disease and joint destruction are complications not symptoms.   This lumping is confusing.  It puts together things that are probable with things that are only a possibility. It always makes  RA diagnosis seem even scarier .

Rheumatoid Arthritis, living close to the edge

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We all know that having  rheumatoid arthritis means living with painful joints. Increased inflammatory factors might make you feel sick as well. You may wake up that way every day. You might end your day the same way. You may  live variations. Your life just doesn’t seem like those of the people in the rheumatoid arthritis drug ads that you see on television. Life with RA is not easy. Sometimes it is very hard.

There is the 30% who have no relief from the biologics or any medication.  And then there are people like me who have complex histories. I have  three cancers and a degenerating spine. That means I have been on and off RA drugs many times. The cancer-causing biologic medications are off the table and  lower the number of biologics available to me.

There are those who have  50% relief with their biologic medication. A very few have 70% relief. There are many who have 20% relief with the biologics. It is hard to function with so little relief although it is considered a successful response by the drug companies.  At the present time I am having about 50% relief with  a combination of Orencia and Leflunomide. My flares are shorter and farther apart. Tolerable.

Living with chronic pain is hard. Living with the sick feeling of flares is very hard. Living with the uncertainty of a disease that can be immobilizing without warning is also very hard.  My life is good and I am grateful for it. However, I take issue with those who dance around the difficulties of RA. It is like they are afraid to say life is tough. Saying it is tough doesn’t make it harder but it does give you an appreciation of what you are dealing with when you have rheumatoid arthritis.

What I wanted to say is that I came very close to falling down the slippery slope into into territory that is unforgiving and has no escape. RA requires rising to next challenge with an energy I don’t always know if I have. But deep down I realize that if I don’t rise to the occasion, stretch, push myself, manage more obstacles, swallow more pain, it will be all over. People become tired. Discouraged. Had enough. Live uncertain lives not knowing what is going to happen next.  But. Catch themselves just in time as they start  sliding down the slippery slope. I was lucky.

RA is a chronic disease. Chronic disease means forever. It means being in it for the long haul. It is an elementary  tenet that we need to learn to accept. At the same time, we can respect our strength and our ability to manage the extra demands made on us by a challenging illness that doesn’t have the answers we need. We do the best we can.

Biologics Actemra and Kevzara

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Tocilizumab (Actemra)

Officially, Actemra is an interleukin-6 receptor antagonist. The drug reduces the impact that Interleukin-6  has on the inflammation process.   Interleukin-6 was discovered and cloned by Japanese immunologist, Tadamitsu Kishimoto who later helped develop the drug Actemra.  In 2010 the FDA approved Actemra for treatment of rheumatoid arthritis.

Actemra is given once every two weeks initially. Depending on the response, it may then be given weekly. The dose is 162mg and it is given under the skin (subcutaneously). Actemra comes in a prefilled syringe, and it also comes in an ACT pen which is an autoinjector. Actemra must be stored under refrigeration until 30 minutes before use.  Actemra may also be given as an infusion which is an IV given over several hours in a medical facility.

  • Blackbox Warning    This warning for Actemra is given for serious, maybe deadly, infections. Infections may include tuberculosis, invasive fungal infections, bacterial, viral, and other infection due to opportunistic pathogens.  A person with a history of diverticulitis should pay attention to new abdominal symptoms, as gastrointestinal perforation has occurred while on Actemra during clinical trials.

Common Side effects   The most common side effects of Actemra are upper respiratory infections (common cold, sinus infection), headache, increased blood pressure and injection site reactions.

Additional serious side effects  

  • Infections must be taken very seriously. A person on an RA biologic will have a compromised immune system.
  • Tuberculosis, if present in the body, may be reactivated. A TB test will reveal the presence of TB. If positive, a person should be treated before starting Actemra.
  • A person with a history of chicken pox should have the new shingles vaccine. Otherwise, there is a risk of shingles.
  • Actemra causes cholesterol levels to rise.Levels should be monitored on a regular basis.

 Pregnancy and lactation            The effects of Actemra on the fetus during pregnancy or on the breast milk are unknown.          

Sarilumab (Kevzara)      

Sarilumab was FDA approved in 2017. It is a human monoclonal antibody produced by recombinant DNA technology in Chinese Hamster Ovary (CHO) cell suspension culture.  It  is an IL-6 inhibitor.

It is given by subcutaneous injection either by a prefilled pen or prefilled syringe. The dosage is 200mg given under the skin every two weeks. It should be stored in the refrigerator. It may be stored at room temperature (77⁰F. max) for fourteen days. This is a unique characteristic of the biologics.

Clinical Studies At 52 weeks about 50% patients reached ACR20( 20% improvement); 40% reached ACR 50(50% improvement) ; 25% reached ACR70(70% improvement).

Common Side effects   The most common side effects of Kevzara are upper respiratory infection, urinary tract infection, redness at the injection site.

Precautions The most frequently observed serious infections with Kevzara include pneumonia and cellulitis. A person on Kevzara needs to be monitored for abnormal blood work, gastrointestinal perforation usually associated with diverticulitis, allergic reaction, increased cancer risk.

BLACK BOX WARNING 

The black box warning for Sarilumab states  “Serious infections leading to hospitalization or death including bacterial, viral, invasive fungi, and other opportunistic infections have occurred in patients receiving Kevzara.”       

Pregnancy and lactation   The effects of Kevzara on the fetus during pregnancy or in breast milk are unknown.

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RA, Nighttime and Cortisol

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We all agree that mornings with RA is not easy. Stiffness, pain,  and suffering that feels like it lasts forever. I have learned to manage morning pain well.  I usually wake up about five or six to use the rest room. At that time, I take  pain medication  and I go back to sleep. When I wake up around eight,  the edge has been taken off my discomfort. I  have coffee and read the New York Times for an hour. And then I am good to go.

Some of us with rheumatoid arthritis (RA) experience increased pain at night.

 When I am in a flare, I have a hard time sleeping.  My body feels worn and ragged. Knuckles, wrists, shoulders, feet, ankles, pelvic girdle, spine. And even my elbows. Nighttime pain is different. It feels heavy. It feels overwhelming. It feels endless. It just seems too much. Research has shown that people who experience nocturnal pain have an increased number of swollen, painful joints. They are sicker.

The body repairs itself during the quiet of night.

For normal bodies the inflammatory system works to heal wounds and ward off infection at night. This is efficient as the system is not competing with digestion and muscle activity for calories as it would during the day.  

  • First the brain triggers the production of melatonin and prolactin as day turns into night.
  • In turn melatonin and prolactin stimulate the production of inflammatory cytokines such as tumor necrosis factor, TNF,  and interleukin 6.  In a normal body these cytokines do their part in nighttime repair of the body.
  • And then  in the wee hours of the morning,  the normal body produces cortisol.  Cortisol  suppresses these increased cytokines and their inflammatory actions. The body returns to its normal levels of inflammatory cytokines.  
  • A normal person wakes up in the morning refreshed and totally unaware of the nighttime activity.

Those who have RA have an overactive inflammatory system. Their inflammatory cytokines are already elevated.

  • So, when melatonin and prolactin stimulate the production of inflammatory cytokines during their routine nighttime body repair, they are adding to an already increased level of inflammation.
  • But then for those with RA, the normal nighttime cortisol  production  does not increase to control  the additional nighttime inflammatory cytokines and resulting inflammation.
  • Consequently, the nighttime cytokine elevation  does not return to its daytime levels. Inflammation continues.  Pain and stiffness continues into the morning.

Understanding why you might have more nighttime pain doesn’t relieve it. It does give us an understanding of what is happening to us. It gives us a chance to work around our situation. Take extra care. Warm shower. Favorite lotion. Warm herbal tea. Hot chocolate. Good book. Favorite movie. Heated mattress pad.   I am on low dose Medrol in addition to Orencia. I split the dose. I take half in the morning and the other half during the evening.  

RA is part of who we are and will always be. Understanding what we have to work with will help us have more satisfying lives.

Targeted biologics for RA Part One Rituxan and Orencia

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The following are targeted biologics approved for rheumatoid arthritis.  Targeted means these drugs  dampen a particular  part of the body’s overactive inflammatory process.

Rituxan

Orencia

Actemra

Kevzara

Kineret

Some of the  biologics will not work for you although they work for some other people. Some biologics work for a short time then stop working.  Some biologics work for years then seem to stop working suddenly. Sometimes an insurance company will stop covering certain biologics and insist a patient use a limited selection from their formulary. Some people are affected by the possible, serious side effects of these drugs. These complications happen to somebody so pay attention when your doctor briefly mentions them. Doctors do not know which drugs will work for you. Docs give it their best shot. It is trial and error. There is no system to finding the biologic that will work for you. This is the current medical  scenario. In this article we will discuss Rituxan and Orencia.

Rituxan (Rituximab)

In 1982,  Rituxan was created by Ronald Levy for the express purpose of targeting malignant B cells.  Rituxan affects the CD20, a transmembrane protein present on the surface of all B-cells. In 2006, the  FDA approved Rituxan, manufactured by Genentech, to treat rheumatoid arthritis when used in combination with methotrexate. Before Rituxan can be used, a TNF inhibitor needed to have been tried and failed.  Rituxan works by reducing the inflammatory action of B cells.

  • How drug is given: Rituxan is given at a medical facility by infusion (IV) given over 3-5 hours. It is given in two doses two weeks apart. The effect may be sustained for 6 months to a year. It may be repeated four times a year if needed.   
  • Common Side effects:  The most common side effects are infusion reactions, infection, body aches, tiredness, nausea.                                                       
  • BLACK BOX  WARNING  for Rituxan states  “Warning: Fatal infusion reactions, severe mucocutaneous reactions, Hepatitis B virus reactivation and progressive multifocal leukoencephalopathy”
  • Additional serious side effects  Rituxan may cause serious infections, heart problems, kidney problems, stomach, and serious bowel problems.
  • Pregnancy and lactation    A  person should not become pregnant during or for twelve months after the last dose of Rituxan. A woman should not breast feed during or for six months after the last dose of Rituxan.    

Orencia  (Abatacept )

Orencia was developed by the American drug company Bristol-Myers Squibb. It was FDA approved in 2005 for RA. It is a successful biologic that depresses the action of the immune system’s T-cells.

  • How it is given Orencia is administered IV once a month or subcutaneously once a week.
  • Common Side effects    The most common side effects of Orencia are upper respiratory infections, such as common cold and sinus infection, sore throat, headache, and nausea.  
  • Black box warning    There is no black box warning for Orencia at this writing. 
  • Serious side effects:              Infection is potentially a serious and common complication of the biologic medications. Orencia depresses the immune system. The most common serious infections involving Orencia are pneumonia and sepsis.  Severe allergic reaction has occurred. Hepatitis B virus reactivation is a possibility. COPD patients on Orencia have more adverse events than those without COPD.    
  • Pregnancy and lactation     Effects of Orencia on the fetus during pregnancy and in breast milk are unknown.

If you would like a copy:

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My Journey with Orencia | Mary’s Arthritis (marysarthritis.com)                                                                                                                                                                                                       

More About RA Drug Orencia | Mary’s Arthritis (marysarthritis.com)

RA In the kitchen

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In the kitchen with RA

When I was twelve, I road my bike downtown with my mom’s green stamp book in my pocket. I road my bike back home with my first Betty Crocker Cookbook . I still have it. Now I have many recipe resources including the food section in the  NY Times, All recipes and Martha Stewart emails, and King Arthur Baking Recipes.

Now I have Rheumatoid Arthritis and my life has added uphill challenges. Between RA pain and fatigue, doctor visits and drug complications,  ambition frequently descends into the basic mode of  required activity. That activity is as basic as  getting dressed in the morning. Cooking?  Is it really necessary anymore especially when you add the difficulties of RA to the mix?  For some of us, it is. I like to cook. I like the taste of homemade meals. I like the fragrance of baking bread coming from the oven. I enjoy working with my tools and ingredients in my kitchen.  Fresh fruit and veggies. Organic chicken. Cream, buttermilk, unsalted butter.  Working in my kitchen is an activity I would not want to give up despite RA.

RA changes you forever. Change can be quick, but it also can be plodding and subtle. Dangerously so. So slow that you don’t notice the change in how you look at yourself. You don’t  see that you are beginning to think like a victim. It is hard to see when you are sliding into a feeling of helplessness. It is very easy to do  when you have a chronic disease. thinking like a victim or feeling that you are helpless. These are the feelings that send us on a downward spiral. We end up becoming stuck. We don’t want to land there. RA is forever. It won’t go away with time. It is necessary to learn how to live with it. If something in our life doesn’t work,  we need to change it even though it’s not often easy. I enjoy making dinner for my son. Because of my RA, I’ve had to make changes to keep up my routine.  

First, I do keep the freezer stocked with quick meals for those times when we need them. These are meals I buy. Most nights I prefer homemade variety. Tonight, we are having turkey burgers. I made the dough for the buns in my bread machine, shaped them and baked them. Easy for me. You might buy the buns. I mixed and refrigerated the ground turkey ingredients.

 I function best with batching my tasks. All I have left is to cook the burgers and put out condiments. The burgers turned out to be quite good. The recipe is an old one from the NY Times. Later in the afternoon I usually start to feel fatigued.  So, when I make  parts of my dinner earlier in the day, dinner isn’t so hard to make.  

My hands are deformed. Presently, I can use the pointer fingers from each hand to type. For a while I had one pointer finger in use. Hard to type with one finger. I do tend to drop items. And I’m aware of it. I hold on  with  more conscience deliberation when I’m working in the kitchen. Washing the meal prep dishes by hand with hot water running over those very hands feels quite nice.  

It is important that as our circumstances change, we adjust and change to make life better for ourselves. I guess it is called adaptation. It is overwhelming if you look at it that way, but even if we didn’t have RA, we still will have to do it. With RA there is just more to it. Life is harder. Gadgets and time saving tools make life easier and less frustrating.  I have a gadget called a reacher. I used it this morning to get a bag of coffee off a high shelf. Handy.

I love to bake. It is creative. It is even meditative. I found a wonderful book on baking called Flour. My son bought it for me. I learned amazing things like how to make the best ever scones and spicy molasses cookies.  I learned how to weigh my ingredients and found it easier than using measuring cups. I learned  to make crème fraiche and chocolate ganache. These are easy to make in spite of their sophisticated names.  There is a certain joy to it all. It means the good things in our lives are available to us even though we have RA.