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RA Paths and Complications

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

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

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.

Wound clinic week 8 negative pressure continues as does RA.

This week at the wound clinic one of my nurses said, “You really did a number on yourself.” I would have to say it was my stool that did a number on me. But I agree my wound is a bad one. It really hurts when they pulled off the wound suction attachment and then the granufoam dressing that looks like a sponge covering my wound. No getting around that one. They were not happy with my progress. Still about 240 cc. of drainage. The difficult spot is unchanged. They all agree that progress would be much slower without the 3M ACTI V.A.C. So, I came home again with my little machine and my mile of tubing.

We went through the VA drive through for our fifth covid shot. Quick. I am at very high risk for the virus. We still wear our masks too. Four hundred people are dying every day. Elderly, those immune compromised and those unvaccinated. Four hundred mostly unnecessary deaths. Sad.

My stove finally died. It was twenty-six years old. Happy for me. I longed for a stove with the variable temperature burners, a window in the oven door, a better oven. My stove refused to give it up. It was the oven that finally went. I bake frequently so consider an oven a necessity. We found a Samsung with the bells and whistles. And we bought it when Lowes was having a good appliance sale.

My short break from my RA symptoms has passed. Joint pain. Knuckles, fingers, wrists, elbows, shoulders, ankles, feet. My degenerating spine kicks in to keep my joints company. As you can see it is an overall thing. It makes me feel sick. The pain is tough but the global inflammation makes it feel much worse.

Doctors have no idea how to manage pain but they refuse to admit it. The latest they have, is to say it doesn’t really exist. It’s all in our head. Apparently, my body did not get the message. Pretty much all my joints hurt and they are not in my head.

What works for me? Sometimes nothing. Distraction usually helps. Tramadol helps me. It doesn’t always help someone with RA. Medrol helps. Actemra helps.

But both are dangerous drugs. We end up taking them because we are so desperate for relief. People have heart attacks and die from Actemra. It does not have a black box warning for heart disease yet. Roche, a Swiss company, would prefer that it never does. Genentech is the subsidiary of Roche that makes Actemra in America. Actemra is the fifth most profitable drug for Roche.

Week seven venous insufficiency

The wound clinic visits are getting to be a routine part of our life. Week 7.  My Texas son asked why it takes so long to heal. The nurses asked if he had seen it. The wound is over seven inches wide by two inches. First of all it is a very big gash. Too big for stitches. Just popped open on impact.

Venous insufficiency happens when the little valves in the veins stop working as they should. Blood has a hard time making its way back to the heart. It seeps through the walls of the veins and settles in nearby tissue. So when my lower leg hit the stool the plumped-up tissue opened forcefully with a large, jagged cut.  It has been draining ever since. This week it has drained eight ounces. There is no infection.

There is a particular spot that isn’t doing well. One of the nurses called it ground zero. They added another something to the wound. They refitted the 3M negative pressure dressing, hooked me back up to the machine.

They are impressed with how far I have come. They expected the duration to be a long one.  So did I. I know how wounds work. Tricky. They require endless patience.

Francis is settled on a pillow next to me. He is very much like a child. If something is bothering  me, it troubles him. Best to be calm.

David is doing the cooking. His salads are very good. I miss baking something. I look forward to my return to the kitchen.

More on the biologics

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.

Death by a thousand cuts

A few years ago I had a severe breast infection caused by a combination of breast cancer radiation and methotrexate. It took ten months of extensive therapy including one surgery to heal. Last year I had wounds in both legs that took nine weeks of treatment at the wound clinic to heal. This year it was a freak accident with a stool that caused an extensive open wound. Each incident was different.

Each incident required extensive wound care at the clinic and at home by me.

I have completed six weeks at the wound clinic  including three weeks attached to a negative pressure machine complete with a long drainage tube.

Today at the wound clinic my nurses were shaking their heads at my wound. Progress had hit a glitch. Their solution was to add a collagen powder to the wound. I am so glad they are finished with debriding the wound. It was extremely painful. .  My nurse carefully cuts a V.A.C. granufoam dressing that looks like a sponge into the shape of my wound. Then she covers it with a V.A.C. drape and applies a pressure sensing pad attached to a drainage tube.

My leg is wrapped in a soft felt like fabric. Then all is sealed in with an adhesive wrap that looks like a modern-day ace bandage sticky on one side. The tubing is attached to the canister of a portable negative pressure machine.  

My raw wound  always hurts until the dressing settles on top of the wound.  Again I leave the clinic feeling depleted.

I sometimes wonder what it would be like not to have trailing tubing and a purring machine to carry around every where I go. Will it be Halloween or Thanksgiving before I am done? Hopefully it isn’t Christmas.

I have never been more than a borderline type two diabetic. My A1C has never made it up to seven. Diabetics who have unstable blood sugars have a serious time with infection and wound healing even with modern medicine. My wounds are leaky, big and slow to heal. The last two were not infected.

After treatment for three different cancers and a long list of RA drugs, my body is just rebelling. My illnesses have never been fatal, so it seems I am destined to live a death by a thousand cuts.

Wound Clinic week five

My nurses were very happy with my progress. Better than most they said. Replacing the suction dressing was not as painful this week. The wound looked good to me also. No more dead tissue. Granulation present. But no,  I couldn’t stop the ACTI V A C wound suction. Maybe two more weeks.

My first two days were exhausting. Worried about the alarm going off and what it meant. Keeping the long tubing corralled. I discovered the machine alarms the first two days because there is air in the system from the changeout. Turning it off for a minute or two gives it the needed time to reset. After that it is fine except for an occasional false alarm.

Now I am a pro. My concern is with the tubing and that has become manageable. It is amazing what we will get used to. Yet, after our Monday eye appointments, I returned home exhausted. It is also amazing the toll this accident has taken on me.

It was a freak accident. One that could not be anticipated or avoided. Frustrating. Most of my health issues stem from complications from cancer treatment or from my rheumatoid arthritis. This was just an accident. So I am taking it easy. Waiting to heal. Reading through Daniel Silva’s twenty-two Gabriel Allon adventures.

My favorite authors were Preston and Child and their Pendergast series. Now my favorite is Daniel Silva who is best known for his Gabriel Allon series. His central character is an art restorer and a secret agent. His books are filled with the art world in Europe while chasing down lost Old Master paintings and bad guys. Good escapism.

The wound clinic week four

I am one day out.  I watch liquid move along the drainage tube from my wound winding its way on its long way to the drainage canister of my 3M ACTI V.A.C. It moves in short bursts.  I am fatigued so I sit here and watch it move. I wonder how much liquid there will be. My leg hurts, aches with bits of sharp stabs.

I was  a little worried  about this appointment. The nurses decided last week that my wound needed help healing. So they ordered an ACTI V. A. C. It arrived. They set it up yesterday at week four at the wound clinic. Present were my regular three RNs plus a nurse from the hospital and a nurse from the university observing.

My wound looks like a slab of raw meat. Setting up a suction on top of it was not a comfortable process.  First, my nurse cuts a V.A.C. granufoam dressing that looks like a sponge into the shape of my wound. Then she covers it with a V.A.C. drape and applies a pressure sensing pad attached to a drainage tube.

My leg is wrapped in a soft felt like fabric. Then all is sealed in with an adhesive wrap that looks like a modern-day ace bandage sticky on one side. The tubing is attached to the canister of a portable negative pressure machine. It is turned on and I am ready for the week. I am told how to change the canister and how to troubleshoot leaks. Then I am sent on my way.

The negative pressure will remove lymph as it drains from the wound and will encourage healing by drawing the edges together and promoting the formation of granulation tissue. I hope this doesn’t take too long. Cords and tubing are not compatible with my less than graceful nature. Fortunately, I am able to sleep with this and my son is doing the cooking for another week. My RA continues to be in a holding pattern with the help of Actemra. So, I am lucky at this point. My concern is being too sedentary. It is hard to be very active with a long tube and a cord attached to a two-pound negative pressure machine. Lucky for me I enjoy reading.

My Rheumatoid Arthritis Handbook

This is an excerpt on diagnosis on my upcoming book, My Rheumatoid Arthritis Handbook

Diagnosis

Rheumatoid Arthritis is diagnosed using a combination of your

  • Doctor’s exam
  • Your explanation of your symptoms
  • Your history
  • Laboratory tests
  • X-rays

There is no single blood test that will diagnose RA.

Today there are the ACR-EULAR Classification Criteria for Rheumatoid Arthritis, a clear list of classic symptoms, and blood tests that, although do not confirm RA, are helpful.

The American College of Rheumatology provides guidelines for treatment in the  American College of Rheumatology Guideline for the Treatment of Rheumatoid Arthritis.

Remember: 

Reaching a diagnosis of RA requires your explanation of what is going on.

Keeping a log and a good journal will help you inform your doctor of how RA is affecting you. It will help her make the clear assessments that will be added to her physical exam, lab tests and x-rays.

Before you are assessed by the rheumatologist, your family doctor or primary will usually determine that you need to see a specialist. Early symptoms of RA are not always clear cut. Primary doctors may have limited knowledge on the complexity of diagnosing RA. They are also reluctant to start a patient on a DMARD such as methotrexate.  

It is up to you to clearly explain your symptoms to give your doctor the clearest picture so she will be able to guide you to the best treatment. Prompt treatment will help you maintain the best function over the long term.

ACR-EULAR Classification Criteria

Rheumatologists commonly use this test to help determine a rheumatoid arthritis diagnosis for new patients. This test is used on patients with at least one inflamed joint that has no other explanation for its cause.

Choose one value for each category (A-D); Add the scores.                                                            A score of  ≥ 6/10 is needed to classify a patient as having RA.

 
 
A.Joint InvolvementValueScore
One large joint0
2-10 large joints1
1-3 small joints, with or without involvement of large joints2
4-10 small joints, with or without involvement of large joints3
>10 joints, at least one small joint5
     
B.Serology, at least one test result needed for classification
Negative RF and negative ACPA (Blood Test)0
Low positive RF or low positive ACPA (Blood Test)2
High positive or high positive ACPA (Blood Test)3
C.Acute-phase reactants, at least one test result needed for classification
Normal CRP and normal ESR (Blood Test)0
Abnormal CRP or ESR (blood test)1
D.Duration of Symptoms
<6 weeks0
>6 weeks1

Test yourself. My score was 7. I am seronegative RA.

EULAR Disease Activity Score Classification Criteria

The 28-joint disease activity score (DAS28) is used to measure the severity of RA. It is an index that combines.

  • the number of tender joints
  • the number of swollen joints
  • ESR or CRP lab test result
  • the general health measure score (0-100)

There are a number of web sites that have the formula for the score. It is easy to plug in your criteria to produce a score. A DAS score higher than 5.1 is considered severe RA. Scores between 3.2 and 5.1 are moderate and scores between 2.6 and 3.2 are low. Scores lower than 2.6 indicate remission. An improvement greater than 1.2 is considered a good response. This test evaluates the joints in the hand, wrists, elbows, shoulders, and knees.

A notable problem with the score is that it does not include the feet. Since feet are commonly affected in 90% of those with RA, not including the joints of the feet in the score restricts its assessment value.

My rheumatologist adjusts the score to include involvement of the feet, but I am sure many other doctors do not.

Health Assessment Questionnaire Disability Index, HAQ

It is a self- administered questionnaire widely used to determine disability among RA patients. It assesses the patient’s ability to perform activities of daily living, pain level and general well-being.

ACR Score

ACR score is usually used in clinical trials to  standardize results. In the RA drug package inserts, there is a section that reviews clinical trials. These inserts include ACR determinations.

The ACR score reflects percentage improvement in a patient’s RA. For example, a score of ACR20 states that a patient has improved 20%, a score of ACR50 states that a patient has improved 50%, and a score of ACR70 states that a patient has improved 70%.