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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.

More on the biologics

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The biologics are miracle drugs for those whose problems are addressed by the specific drug. At this time there is no way to tell which biologic will work for you. It is a trial-and-error process. But when you find your miracle drug, there are several more conditions.

The first is cost. The VA pays $2800.00 a month for my Actemra. I pay $11.00. Under my advantage plan, the co-pay would be $300.00 a month. That would be more than I could reasonably  afford. The drug companies have special cost reduced programs that will last up to a year, but those on social security or a government insurance will not qualify. If you qualify for Medicaid, you should be able to obtain the drug.  If you can afford the cost, no problem.

The other qualifiers are length of effectiveness and tolerance of side effects. Some will have years of relief from their biologic. Some will have a year. Mine usually lasted a year before they stopped working.

Side effects and complications from the drugs will cause many to discontinue the prescription. I am at that point with Actemra. I have spent the last few weeks not feeling well. My leg wound is inconvenient and it does hurt but is not enough to make me feel so poorly. I have begun to feel that I am a sick person. I do think it is the Actemra. There is nothing else that it could be.

Actemra will cause MS and it will cause a perforated gut in addition to infections. It won’t be too long before it is black boxed for heart disease. The FDA is slow with their qualifiers. It will come.

I am stopping the drug. Another possibility is taking it every other week. For now, I am done with it. That was my last treatment possibility. I’ve been through them all. The JAK inhibitors cause cancer and are not recommended for me. We will see what happens next. My RA Doc is out of options.

Pepperidge Farm bagels and lap swimming

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From one window in my bedroom I see a blooming crape myrtle with a rich blue sky above it. From another window in my bedroom is the panoramic vista of the sandia mountains. I have great views from my little house. From my room you would never know that it was 100⁰ F.  in my lovely yard. A good day to be inside. The squirrels and the chipmunks are home in their burrows. Cool and cozy. The birds on low hanging branches of shady bushes. Of course, Francis, my eight-year-old cock a poo is curled up on a pillow next to me. He has no interest in the great outdoors. He is happy hanging out next to me.

I have put aside my sourdough English muffin project. Minimizing oven use. And I have found Pepperidge Farm everything bagels. My favorite in New Mexico was Trader Joe’s sprouted wheat bagels, but they are no longer available  in Albuquerque. The Pepperidge Farm bagels are a great replacement.

Today was a tough RA day. It did require extra Medrol. Falling apart is tough. Still I am tasked with  managing. The shoulders are center stage today.  

I was a lap swimmer for years. Seventy-two lengths equals a mile in the normal health club pool unless you are swimming in a fifty-meter pool. That is where my shoulders got into trouble. Swimming is tough on the shoulders.

Putting on a bra is hard to do. I have a system for shirts. Not a problem. Pulling up shorts is hard. Reaching up for something is not easy. Shoulder pain is sharp pain as opposed to burning pain in the knuckles or wrists. So it is harder to live with.

My Texas son, Chris, asked if there was some service that I needed. I don’t really think I need a service. I need to figure out an easier way to get dressed. I have already modified clothing. I take pain medicine before I dress. Medically, steroid injections are possible as is physical therapy.

I have a list of rotator cuff exercises my RA doc gave me. We will discuss the other possibilities at our next appointment.

Initial Treatment for RA

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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 specific 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.

RA Progression Plus Osteoarthritis

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Having rheumatoid arthritis layered with  osteoarthritis is a tough but a common combination. I have severe arthritis in both my shoulders. RA plays a big role. I was also a lap swimmer for years. Swimming is tough on the shoulders. So my shoulders wore out. Double whammy.

One of my problems with arthritis in the shoulders is hooking my bra. I have been hooking it in the front and then twisting it around  to the back. That has worked but it is becoming harder to do. I have tried sports bras but they are also hard to get on. I haven’t found bras that hook in the front. Of course, the other possibility is not wearing a bra all the time. That will work too. I don’t want to be a sloppy dresser but pain  can persuade me to loosen up especially when I can stay home.

I have had RA for nine years. It is progressive. The DMARDs help as do the biologics.  But the RA is still progressive. I can’t drive anymore because of my numb feet.  I do miss driving my stick shift Mini Cooper Clubman.  My feet were the first to be affected with RA.

My hands are deformed. In the beginning, I was breaking glasses and tipping things over. I could only use my right pointer for typing. That was hard. But my body adjusted. I no long tip or break. Although I can no longer type with the full keyboard, I can use both pointers and all is fine. I adjust.

I  have been to the other side. So I know that as bad as my RA and all its trimmings have been,  an aggressive cancer can be worse. I spent a year in the depths of a different kind of illness. Biopsy with a surprise. Robotic surgery that left me emptied out. A summer of chemo that left me bald and depleted.  An invasive radiation treatment that finished me off. It took me a while to recover. That was four years ago.

I am grateful. Although life is not easy, I am not dying, and life is still pretty good.

Methotrexate and Politicians

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When politicians and bureaucrats start making medical decisions, they usually don’t know what they are doing and they look pretty much like dangerous  fools.  Let’s take the issue of methotrexate.

In the rheumatology world methotrexate is considered a safe basic drug for rheumatoid arthritis. It may be used alone. It may be used in combination with other drugs. When a patient is started on a biologic medication,  methotrexate is usually added as it improves response. It is not recommended for use during pregnancy. It is an inexpensive drug that has been used since the 50’s.

In the Texas law S.B. 4 methotrexate has been added to the list of drugs that can cause abortion. The reason for this comes from faulty information. In a normal healthy woman methotrexate will not cause an abortion. However, methotrexate can be used to end an ectopic pregnancy. This is a condition where the fertilized egg is implanted outside the uterus. It is not viable.  If the egg is not removed, the woman’s life is at grave risk.

Although provision has been made for the other uses of methotrexate, such as RA or Lupus, pharmacists are at risk when they fill a prescription. They are especially at risk for lawsuits from overzealous citizens authorized to fight abortion especially in states like Texas. Once started  these lawsuits could take years to resolve. It is easier just not to prescribe the drug.

In Texas, although there are exceptions, many pharmacists will not fill methotrexate prescriptions and some rheumatologists are not writing orders for it. They are afraid of being sued.

The politicians are influencing  medicine with their faulty edicts and they are putting the lives of women at risk.

Here we go again. During the opiate scandal, the same thing happened. Doctors were afraid to prescribe opiates for those in pain. They feared being ostracized or sued. They slowly came to the conclusion that patients didn’t really need pain medication. So unless you had cancer, those in severe pain were given no relief. The medical community came up with a lot of mumbo jumbo to rationalize their behavior. Were there more suicides? Probably. More depression? Of course.

So, yes here we go again. My advice is to be strong and to be determined.  There are doctors and pharmacists who practice good medicine without fear. You are entitled to have your methotrexate prescription filled even if you live in Texas.

No magic bullet for RA yet

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Rheumatoid arthritis seems like an easy disease to manage today.  After all, we have the revolutionary biologics. The RA biologics do help but what happens when you develop an infection or a cancer?

The year I was diagnosed with RA I was also diagnosed with two different cancers that required extensive treatment.  As a result, my rheumatologist decided it was best not to use a biologic medication.

As my rheumatoid arthritis progressed and became difficult to treat, we agreed that a biologic medication was the only solution. She avoided the TNF inhibitors. In order to do so she had to get permission from my insurance company. Today she would also avoid the JAK inhibitors. Both classes can cause cancer.

Orencia worked the best. The first time it lasted ten months. The second time it lasted the same.

Cancer complicated my RA treatment. I developed a third cancer that was a complication from Tamoxifen, a drug used to treat my breast cancer. Again, my RA treatment was put on hold while I had robotic surgery, chemo and radiation.

My last cancer was four years ago. Treatment took most of 2018. Since then, I have had two serious infections. One took ten months plus surgery to heal. The other took intensive treatment over a summer.

Cancer and infections are done. I have been on Actemra for two months. I see it as starting to help. Time will tell. When you have rheumatoid arthritis, life is challenging. Although many are well managed, there are about a third of us who have complicated cases with no easy answers. We are still looking for our magic bullet.

Although the biologics are a game changer, they aren’t helpful when we have cancer or infections. Nor are they helpful for those of us who do not respond to them. Treatment for RA has come a long way, but as you can see it still has a long way to go.

RA and Osteoporosis

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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

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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

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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.