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RA and Osteoporosis

Women who have rheumatoid arthritis have an additional risk of osteoporosis as do Caucasian and Asian women. The hip, wrist and spine are common osteoporosis sites.

Bones are living tissue.

Like other human tissue, bone cells are continually being broken down and rebuilt. The inflammation of rheumatoid arthritis interferes with this process. Bone cells are not as easily replaced as the old cells are being broken down. Bones thin and become brittle. They become weak and are easily broken. This is osteoporosis.

A few years ago in the spring, I was working on my patio. I turned, caught my foot on the edge of a carpet and fell. The skin on the length of my forearm tore open. That was my concern. But at the same time I fractured the bones of several vertebrae. I did not realize that I had osteoporosis in the spine. The vertebrae had become fragile. I recovered. My fractures healed. Lucky for me.  

Where did my osteoporosis come from?

  • For one thing, I had a difficult to manage RA for seven years.  Inflammation contributes to the development of osteoporosis by interfering with the bone building process.
  • I had also been taking methotrexate for seven years. Methotrexate may contribute to the development of osteoporosis as do many other drugs.
  • I had been on a hormone to treat breast cancer. Another cause of bone loss.
  • Inactivity is another cause of osteoporosis. It is the old ‘use it or lose it’. I was not as active as I had been because I was living in pain.
  • Steroids are a notorious cause of bone loss. I had been on low dose steroids for years. There were times when steroids were the only treatment I had for my RA.

What to do to maintain bone health

  • Doctor recommended supplements of calcium and vitamin D.
  • Exercise both aerobic like walking and weightbearing using small weights
  • Keep your home safe: avoid using small rugs, clean up spills, avoid slippery areas. Fractures are dangerous especially as a person ages.
  • You may qualify for a medication such as Alendronate to treat osteoporosis.

Cleveland Clinic has an excellent article on osteoporosis.

Osteoporosis: Symptoms, Causes, Tests & Treatment (clevelandclinic.org)

RA Biologics the Safe Way

                                                                                                 

I had a friend once tell me she would never take one of the biologics. They have too many side effects and have dangerous complications. My friend didn’t have rheumatoid arthritis.

Rheumatoid arthritis and many of the other inflammatory or autoimmune diseases cause disruptions in the body. Pain that overwhelms. Fatigue that immobilizes.

So when the medical community came up with the biologic medication that promised relief, those with RA wanted just that.

I am currently on Actemra, tocilizumab. It is a biologic medication that can only be given by injection.  It interferes with the process of Interleukin-6. Like most RA biologics Actemra reduces symptoms  about 50%. It doesn’t cure. It just helps.

The dangers of the biologics are real. The need for RA relief is also real. How do we avoid serious complications when we are prescribed biologics for our rheumatoid arthritis?

First and foremost, it is very important that your doctor is aware  of your complete medical history.

  1. Your doctor will order a TB test. She will order  labs periodically to check on your liver and kidney function.
  • If you are 50, you should be sure to have the new shingles vaccine, Shingrix even if you have had the older one.   It  more effective. It is not a live vaccine so can be administered after you have started a biologic. Most people have been exposed to chicken pox whether or not they remember having it. Shingles is a nasty, delayed complication of chicken pox that can be activated when a person is receiving a biologic. Shingrix will protect you.
  • There are biologics that should be avoided if you have heart disease.
  • There are biologics that should be avoided if you have had cancer. Your doctor will know the biologics to avoid if you have either condition.
  • Actemra like many of the biologics  can reactivate histoplasmosis which I have had.  My rheumatologist ran a blood test, I have no histoplasmosis activity in my body.
  • I have had diverticulitis. Actemra can cause a rupture in the intestinal wall. My doc’s answer to this issue is simple. If I have any intestinal issues, I should go to the ER.  Not  reassuring but not enough to stop taking it. The symptoms are too incapacitating.
  • Serious infections are a major complication of the biologics. Your immune system is suppressed. Your body might not be able to ‘fight off’ an exposure to an infection. Avoid exposure to family and friends who have an infection.

It is also important that you take good care of yourself.

  • Avoid working long hours.
  • Spend more time sleeping.
  • Choose rest over more work whether at home or in the office.
  • Be sure to have enough protein plus vegetables and fruit.

The biologics do not cure rheumatoid arthritis. They do not even stop all the symptoms of RA. But they can stop enough of the symptoms to make life manageable.  

Salt and leaving remission

I used to think salt is just salt, NaCl. Then I learned that sea salt was better. Well, there is more. Now I know kosher salt is much better for baking than sea salt. In America, kosher salt is made by Morton and by Diamond Crystal. However, Diamond Crystal Kosher salt is a crystal that is less dense and flakier than Morton’s and so is less salty. Bakers prefer Diamond Crystal and recommend using less if you use Morton’s.

There is always something better. Like using unsalted butter for baking. And there is always something new. Something previously unknown. Like homemade creme fraiche. I suppose those are two of the little pleasures in life. To learn and to discover. Pleasures that renew often over a lifetime.

Distraction is a pleasure when we have a chronic disease. It is relief. A need. A gift that is different for each of us. We always want to be distracted from our disease. But because rheumatoid arthritis changes a lot, it is relentless in its persistence to stay front and center in our lives.

We may be happily living, injecting our biologic medication, feeling like we have found the answer. Wondering what all the fuss is about. Then our medication stops working. Or we develop a nasty infection. Or our lungs start to act up. Maybe our heart.  I could go on and on. Let’s just stop at where the medication stops working and our body’s inflammation comes roaring to life. We are back to square one. Pain. Swelling. Fatigue. Now our chronic disease is dead center again. We now know what the fuss was all about.

A change like this is scary. There is upheaval in our daily life and the future is uncertain. It is like starting over. Being a newly diagnosed patient. It is important to see your rheumatologist. She will have extensive experience with RA change.  She will know what to do to help. She will know the next step.  

RA change may not be frequent for some. The RA biologics have made life better for many. But there is that group of us where the state of our RA changes frequently. We have relentless pain. We develop infections. Cancer. We become disabled. That is our lot.

So, we keep working for a better life, better health. Our lives are full of uncertainty. Sometimes we are scared. Sometimes we cry. In spite of it all we can stop. We can find pleasure. Amazing enough, it is in the simple distractions.  It is the little things that make our lives worth living.

A leaf on a breeze

                                                                           

A leaf on a breeze                                                                      

      RA Journal           6/7/22

I am trying to think of a word that means to float like a leaf on a gentle breeze. Free. Light. Weightless. Being. This thought was taken from the old Firefly adventure movie Serenity. It was about a soft landing, but I think of it without the landing. I am thinking about this because as I woke this morning every nerve in my body was screaming out to me in pain. I’ve taken pain medicine all day, but it only helps some. I am feeling worn. And since this seems to be my daily lot, I’m trying to decide what is my next level of acceptance needs to be.

My RA flares are different than they were earlier on. My first flares left me totally fatigued. Absolutely no energy to do anything. I remember the drained feeling being as bad as the joint pain. As incapacitating. The medics finally figured out that this was all due to increased cytokine activity in an RA person’s body.

Over the years these attacks have become an everyday, all-day event. I really can’t call them flares anymore. Flares are bursts of increase activity. Now, the pain is sharper, burning, aching all at once and more of the time.  I do believe the biologic, tocilizumab, Actemra, is helping but on average it is expected to work 20-50%.  No more.

So my thought of floating like a leaf on a gentle breeze is the thought of accepting my lot without argument and wasted energy. Or even thinking too much about it. It is existing without anger or resentment. It is letting go.  It is the acceptance thing. Maybe it is part routine.

So, I made English Muffins. My favorite. I made them over two days. A bonus of better flavor when refrigerated overnight. Like making rye bread for my son, it is a ritual. Routine. Not difficult. Doing without care. Satisfying. Like being the leaf. Floating along. Not to worry.

RA Feet and Hydroponics

When you are putting on your shoes, have you ever thought about what is inside your feet?  Did you know that twenty-five percent of the bones in the body are in the feet?  The feet each have thirty joints and more than one hundred muscles, ligaments and tendons. That is a lot of structure.

My RA started in my feet. It was largely ignored by my primary.  It was a time  before rheumatologists took RA in the feet seriously. Not that long ago. Still today an assessment tool that RA docs use every day does not include the joints of the foot.

Eventually ninety percent of those with RA have problems with the joints in their feet. Taking care of our feet is important. Our feet are necessary for mobility. I have always worn good shoes. A necessity when you are a nurse. When I am out, I wear custom inserts in special shoes. At home I wear yoga Muezna socks over regular socks. Structure and protection when I am out. Comfort at home.

My tasty treat tomato plants are quite large. Amazing how they grew from tiny seeds into plants covered in flowers and little tomatoes. Oregano and basil thrive in the hydroponics. I have dill and thyme growing plus a milkweed plant and a sunflower plant. The last two will make their way to pots on the patio. My plan for the hydroponics is as a starter medium and also a herb garden for kitchen use.

Chocolate Mousse Cake

On my son’s birthday I like to bake a special cake. One year I made a carrot cake. One year it was a vanilla cake filled with raspberry jam and whipped cream with lemon curd  and topped with chocolate frosting.

This year I found a recipe online at a site that was new to me. The cake was  chocolate mousse with ganache. My son loves chocolate. I made the cake base a day earlier. I leave it in the springform pan. The chocolate was enhanced with coffee and enriched with sour cream.  

This two or three step process allows me to do more. Small steps and I can manage. Otherwise my pain becomes too intense and I am miserable. I can enjoy my Julia Child moment.

The mousse was made with 62% chocolate and cream cheese. It border lined somewhere between a chocolate mousse and a chocolate cheesecake. The mousse tops the cake in the springform pan and is chilled for several hours.

The springform pan released.  Cake looks good, clean layers. I slid it onto a cake plate. Chocolate ganache gave the top of the cake a glossy finish. My son loved the cake. It was good.  Success.

JAK inhibitors

The first JAK inhibitor, Xeljanz (Tofacitinib), was approved for use by the FDA for rheumatoid arthritis use in 2012. It was a breakthrough medication for RA as it was the first to offer a targeted drug in pill form. It also added to the arsenal of drugs that would possibly ease the symptoms of RA.

At this time there are three  JAK inhibitors  for RA. They are taken once a day in extended-release form. The three drugs are similar in action. However, it is recommended that if one doesn’t work,  you can still try another.

The synthetic, small molecule JAK inhibitors work by  suppressing   the Janus kinase enzymes that are involved in the process of inflammation.  These drugs are classified as DMARDs, Disease Modifying  Anti-Rheumatic Drugs. A JAK inhibitor  may be prescribed when a TNF inhibitor no longer works.

  • A TB test is ordered as the JAK inhibitor may reactivate a dormant TB.
  • Lipids, liver enzymes, CBC and other labs are ordered before these drugs are prescribed and periodically during treatment as the JAK inhibitors affect the lipids, liver enzymes and blood count.
  • The shingles vaccine is given. If the chicken pox virus is dormant in an individual, , the JAK inhibitor may cause shingles.

Common side effects include diarrhea, cold symptoms, shingles, headache. May increase cholesterol numbers.

As convenient as these drugs are to take, do not take the black box warnings lightly. The complications from JAK inhibitors do happen to real people.

For a while the JAK inhibitors, pills, like Pfizer’s tofacitinib, Xeljanz, seemed like they would be a good alternative .  Tofacitinib was approved in 2012. At the time there was concern about its increased rate of infections and malignancies.

A multinational safety Oral Surveillance study was initiated in 2014 because of the above concerns. The final study analysis was published in the New England Journal of Medicine. Tofacitinib’s increased risk of major adverse cardiovascular events and incident cancers was documented. A black box warning is now included on all JAK inhibitors for risk of major cardiac event and for malignancies. The JAK inhibitors were no longer attractive.

Black box warnings are similar to those for the biologics.

  • serious infections(fungal infections, TB)
  •  lymphoma
  •  malignancies   
  • blood clotting disorders
  •  heart disorders
  • Tears in the GI tract

Pregnancy and Breastfeeding

Not recommended for use during pregnancy or breastfeeding. The JAK inhibitors are not safe for the fetus. In animal studies Rinvoq did  pass through milk. For women of childbearing age,  birth control is recommended while taking JAK inhibitors.

There are three JAK inhibitors currently approved for treatment of rheumatoid arthritis in the United States.

  • Xeljanz (Tofacitinib)                                                                                          The first JAK inhibitor approved for RA. It was first developedas an immunosuppressant for organ transplants by NIH(National Institutes of Health)and Pfizer working together.  The original prescription was for 5mg twice a day. The new version Xeljanz ER 11mg is taken once a day.  List price $2500.00/month.
  • Olumiant (Baricitinib)                                                                                A second JAK inhibitor that was approved in 2018 for Eli Lily. The prescription is 2mg once a day. List price $2300/month.
  • Rinvoq (Upadacitinib), developed by AbbVie, is a third JAK inhibitor that was approved in 2019.  The prescription is 15mg extended-release tablets. It has been widely advertised on television.  List price$5100.00/mo.

These prices are for those without insurance. With insurance the patient cost is much less. My insurance company classifies the biologics and the JAK inhibitors as class five which is a $300/month copay. My copay at the VA for the same is $25/month.

How doctors treat a new rheumatoid arthritis patient

        

Whether an individual is seropositive or seronegative rheumatoid arthritis will determine how soon she is diagnosed and what her initial treatment will be.

  • If she is seropositive, she may be diagnosed early in her disease. With a positive RF and anti-CCP antibody test plus joint symptoms a patient may be started on Plaquenil, hydroxychloroquine, a drug originally used for malaria.  It is a mild, effective drug for early RA. As a person with seropositive RA develops increased symptoms, she will probably be started on methotrexate.
  • A patient who is seronegative will need to have an established disease in order to be diagnosed with rheumatoid arthritis.  There is no  test for seronegative RA.

I had more than ten small, symmetrical, swollen joints, two-month duration, morning stiffness, positive sed rate and positive CRP when I was diagnosed.  

A seronegative RA patient will likely be started on methotrexate in its pill form. By pharmaceutical and medical standards, it is considered safe and effective. It worked about fifty percent for me which is standard. It wasn’t enough but it might be acceptable for someone else.

The methotrexate pills  will gradually be increased to a maximum and optimum dose of 25 mgs a week.  The pills are tiny and come in 2.5 mg tablets so there will be a lot of them. Up to ten. They are supposed to be taken all at once to be effective. Maybe one at a time but consecutively.

 Methotrexate by injection is next when the pills are not enough or when their side effects are not tolerated.  Methotrexate side effects  include nausea and diarrhea. The side effects pass but are very upsetting when they happen. Methotrexate injections avoid the side effects and are more effective.

When  the methotrexate works but is not enough, American rheumatologists will likely add a TNF inhibitor like Humira. European rheumatologists as well as most other rheumatologists in the world might use the triple therapy of methotrexate, hydroxychloroquine, and sulfasalazine first.  It is  cheaper than the RA biologics and is considered effective for some.

This is the start of your RA journey with medical treatment. It will be smooth at times and then it will be frustrating at other times. During it all it is important to remain engaged.

Cancer patients are brave.

I wrote this in 2014. I had just finished radiation treatment for breast cancer where I had met fellow cancer patients and I was getting ready for radiation treatment for stage three thyroid cancer. The thoughts are still relevant.

Be brave.

You can fight this thing.

You must have a good attitude.

Be positive.

Don’t cry!

You are not going to die.

Cheer up.

How does one express fear when told to be brave and fight? How does one express a searing feeling of helplessness? Fight what exactly?

A cancer patient has a good attitude every day when she wakes up and wishes her cancer is gone, but still knowing in the recesses of her heart that it is still be there and she still gets out of bed and carries on.

A cancer patient is brave every day when she accepts the changes that have come into her life and she is able  to come to terms with the reality that life will never be the same again.

A cancer patient has a positive  attitude when she endures all the insults her body will endure for the sake of treatment. Calling it a treatment doesn’t make it less barbaric or less invasive.

A cancer patient is allowed to cry. With so many life disruptions and so much invasion with drugs, surgery and radiation, it is hard not to cry.  All a person really wants is someone there. No words.

Do we die alone when others refuse to see what is real? Let’s face it. Some of us will die. We know who we are. We need help in getting through it. Plans that need to be made. Words that need to be said.  Most cancer patients in the final stage know they are there. No surprises. A cancer patient needs not to be lonely. They need to share this stage, too.

How can we do the job we need to do when we are expected to be unrealistic heroes?

Look closer at your loved one with cancer. You will see a person who is already a  hero.  You will see someone working very hard to understand what is going on, someone living her day as best she can while waiting for the last treatment to shrink the tumor or waiting for the latest test results.

You will see the struggle she has as those very markers that she identified with her life start to erode, to slip away.  She tries so hard to keep up a good front. Women who have to work through the very worst of their treatment just to keep their insurance. Moms with little children struggling to care for their children after chemo. There are many heroes among us.

A cancer patient needs a kind word, a thoughtful gesture. A cancer patient will have ups and will have downs. She will endure. Grow stronger. Be confident that she can handle her fate as she has so many times before. To help them get there, a little kindness goes a long ways.

In 2018 I had my third cancer. Treatment was brutal. It was a bad cancer. I was fortunate that for the third time my rheumatologist ordered the tests that would reveal the seriousness of it. So, it was treated early. Yes, my rheumatologist saved my life three times.

Albuquerque progress and RA

In Albuquerque we are already in the nineties. Early. The fires are bad this year. I am growing plants in pots with morning sun only. The heat has become more intense with each passing year. Gardening has changed as I have changed.

I started out with hydroponics this spring. Keeping my gardening active but on a smaller scale. I added a little cherry tomato seed. I love this seed. It was the first tomato I had grown from seed. I had gotten the seed packet in a special NE program designed to encourage people to grow their own food. I had found the program on Facebook.

This Tasty Treat tomato was originally offered in a gardening package for children by Burpee. It is no longer offered. The world’s loss. It is amazingly easy to grow and it is very sturdy. So my little tomato seed was happy in its hydroponic water. It did what seeds do. It germinated. Popped little green leaves and kept growing.

 It graduated to a little pot. It kept growing and is now outdoors in morning sun in a big pot. Two in fact. One for me and one for the squirrels. The plants are in cages. One will soon be netted. I see the squirrel checking the progress daily.

My rheumatoid arthritis has had wide swings this week. I had two days where the pain and stiffness was so bad, I could think of little else. I found I still could read Daniel Silva. A good RA distraction. He has written twenty-three books with Gabriel Allon, an art restorer and Israeli agent, as the main character. Mr. Silva is an excellent storyteller. The stories frequently take place in Europe and talk about art.  I have always gotten his books from the Albuquerque public library, digitally. Candy for the mind.

Today was Actemra day. I have an ACT pen. Looks big and intimidating but it would be good for those who are afraid of needles. You don’t actually see the needle. You just press the pen on the skin and press the plunger. It does most of the work for you. I have days where I still have pain and stiffness, but it is in a state where I can pursue favorite activities.