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TNF inhibitors

The next line in the treatment of RA

TNF inhibitors/TNF blockers are a group of biologic medicines that suppress the body’s response to TNF. TNF (Tumor Necrosis Factor) is a complex protein produced by the white blood cells in response to inflammatory events in the body. Those who have rheumatoid arthritis may be given a TNF inhibitor as part of their therapy.

This is the third article in a series about the treatment options for rheumatoid arthritis. You can download the articles or you can read them on Marysarthritis.com.


Many insurance plans may require that you start your therapy with a nonbiologic such as methotrexate (MTX). As troublesome as the side effects are in the beginning, methotrexate has a good success rate. When MTX isn’t enough the doctor may order a combination of methotrexate with sulfasalazine and/or leflunomide. A TNF inhibitor may be the added to the methotrexate.


Although the TNF inhibitors are basically similar, they do have different
properties. If one doesn’t work for you, another might.


Your doctor will order a TB test and will order a shingles vaccine. These diseases are checked out because if these diseases are inactive in your body when you start the TNF inhibitor, they may become active again.


Some of these drugs are given by injection under the skin (subcutaneous, sc).
Drug companies make this process easy with tiny needles and clear instructions.


There are five TNF inhibitors.
• Humira(adalimumab)
• Enbrel(etanercept)
• Remicade(infliximab)
• Simponi(golimumab)
• Cimzia(certolizumab pegol)


Humira is available in a prefilled syringe or a Humira pen of 40mg.
Administered sc every other week. Sometimes the dose is every week. When you sign up for Humira complete, you will be assigned a nurse who can help you optimize your use of Humira. Humira was FDA approved in 2002.


Enbrel was the first TNF inhibitor to be approved by the FDA in 1998; Enbrel is administered sc 50 mg once a week using a prefilled cartridge and reusable auto injector.


Remicade is given in an infusion center by IV over two-hours. There is a series of initial starter doses at baseline, two, and six weeks. Then a maintenance dose is infused every eight weeks. FDA approval 1998.


Simponi
FDA approval 2009. Simponi is injected sc with a 50mg prefilled
syringe once a month. Simponi aria is given by a 30-minute infusion initially and at four weeks. The maintenance dose is a thirty minute infusion determined by weight every eight weeks.


Cimzia FDA approval 2008. Loading dose two 200mg prefilled syringes sc
initially and at two and four weeks. Maintenance dose 200mg sc every other
week or two 200mg prefilled syringes once a month.


Black box warnings* have been issued for all the TNF inhibitors. These are a few.
• They suppress the immune system and can cause serious infections that
result in death.
• Those who have a history of histoplasmosis, TB or hepatitis B may have
their disease reactivated when using the TNF inhibitors.
• The TNF inhibitors are associated with new onset or worsening of nervous
diseases multiple sclerosis and Guillain-Barre syndrome.
• Heart failure can occur or get worse on the TNF inhibitors.
• Higher rates of cancer have been reported including lymphoma and skin
cancer. Hepatosplenic T cell lymphoma has been seen in young males
who are on TNF inhibitors.


Pregnancy If you are pregnant or planning to be, it is important to discuss your pregnancy with your doctor. Some RA drugs are safer than others during
pregnancy.


The big question for the TNF inhibitors as it is for all the biologics is ‘does the
benefit outweigh the risk?’ The TNF inhibitors have made life much better for
many people. It is important to note that they are powerful drugs with powerful side effects. . When you choose to use them in your treatment program for rheumatoid arthritis follow the recommended protocols.


*A black box warning is a very serious warning from the FDA. These things are
happening to RA patients.

https://marysarthritis.com

RA at eight years

I have been living with rheumatoid arthritis for over eight years now. My onset was dramatic and included a trip to the ER. I was in such severe pain, I was all but immobilized. The ER doc sent me to a rheumatologist. It was the start of the longest relationship I have ever had with a doctor.

I was started on methotrexate pills, prednisone as bridge therapy, and meloxicam. Treatment was complicated with the diagnosis of two cancers both discovered by my rheumatologist during routine tests that first year.

My first cancer was stage three thyroid cancer which required total removal of my thyroid, a complicated surgery followed by systemic radiation treatment that also damaged my salivary glands. On a follow up scan to the one that found the thyroid cancer and ten days after the thyroid cancer surgery, breast cancer was found. A month after the first cancer surgery, I had the second for breast cancer. This was also followed by a series of radiation treatments and then aromatase inhibitors. The last was tamoxifen (which later caused my third cancer).

At the time, the TNF inhibitors would have been the next step. Methotrexate only partially helped me. My doc felt that with my having two cancers, taking the TNF inhibitors would be too risky. So instead, we worked through various combinations of methotrexate with sulfasalazine, leflunomide, and hydroxychloroquine. It was not the answer.

We turned to the biologics. My doc got an exemption from the insurance company to skip the TNF inhibitors and go straight to Rituxan.  It didn’t work. There was not a lot of success until I was given Orencia. I was on 25mg of methotrexate plus the Orencia. I did fine for about a year. I developed a flu and the Orencia stopped working.

After several years, my feet started to feel numb. It wasn’t total numbness. It was patchy. It was enough to make driving my standard transmission mini cooper risky. I just wasn’t sure where my feet were touching the pedals. When the full realization of what was happening hit me, I stopped driving.

Next was a hip replacement. It was a terrible experience but worth it. Next on the plan was Actemra. I had a TB test and the shingles vaccine. My doc also wanted a follow-up to a lumbar scan that showed something in my uterus. A biopsy was scheduled with a gyn doc. She reassured me that it probably was nothing. The biopsy came back as a rare serous uterine cancer which was aggressive and deadly and caused by my breast cancer drug, Tamoxifen.

Fortunately for me the cancer was in the early stages, I was systematically gutted with robotic surgery, poisoned with a summer of chemo leaving me bald and then humiliated with a round of vaginal radiation.  I have a hard time believing that any of my cancers would return as the treatments were so brutal.

Every time we were about to start Actemra something came up. Next was a severe soft tissue necrosis of the radiated tissue of my breast. It took ten months of wound care plus a surgery before I recovered. The culprit was methotrexate. I had been on it for seven years. I was giving myself injections for the last few years. Its thirteenth black box warning was soft tissue necrosis. I no longer have methotrexate as a tool. My flares increased in severity. I am typing with one finger as my hands are almost non-functional.

My RA doc hates steroids more now than ever. With no other solution, I increased the amount of Medrol I was taking as my feet and hands were swelling more and more. Wounds popped open around my lower legs and started draining clear fluid. When my doc saw my legs she put me on Lasix, TED hose, ordered an MRI and cancelled my Medrol.

Turns out Actemra is not recommended for some disorders (diverticulitis, histoplasmosis) that are in my history. The JAC inhibitors can cause cancer. The only drug left was Orencia.

I have been on Orencia for three months. Orencia seems to be the safest of the biologics. It was the only thing left to try and there was no methotrexate to go with it. It is helping. I hope it lasts longer this time. My doc’s toolbox of remedies is nearly empty.  My RA doc and I have had the discussion. She brought up Imuran. It is used for transplant patients and for those with RA.

Palliative support is what I have left. This is me eight years in.

My case seems like an odd one. In some ways it may be. Each of us has a unique story.  The current selection of RA drugs is a big move forward. The biologics are miracle dugs for many. Then there is the third to a half of us who have RA who have mixed to no success with RA drugs.  We are a big problem to the medical community.

Research is ongoing. In the meantime, we need to be assertive with our doctors. We need to understand our treatment plan and expect change when it is not working. We also need to set up our own toolbox that includes a positive mindset and an understanding of RA and of the treatment choices. We have a chronic, progressive disease. It is not going to disappear. Only about 10% of us go into remission. We need to learn to live with it. Hopefully, you have better luck than I have had.  With all my pain and health problems, I am grateful to be alive and every day brings joy to my life.

The Four Non-biologic DMARDs

The Four Non-biologic DMARDs,

Disease Modifying Anti-Rheumatic Drugs,

in common use are

Methotrexate

MTX, Rheumatrex, Trexall, Otrexup

Methotrexate has become the most frequently used DMARD in the world.  It reduces the inflammation of RA by suppressing the immune system.  It does not induce remission, but it does slow the progression of joint damage.

Aminopterin, an earlier form of methotrexate was used successfully in a 1951 study to treat RA. In the 1960s methotrexate was extensively studied but its success in treating RA was overshadowed by the popularity of corticosteroids.

In 1972 rheumatologist Rex Hoffmeister reported success with IM injections of methotrexate. After a 15-year study, his 1983 report encouraged other rheumatologists to study the use of methotrexate. After two pivotal studies, the FDA approved methotrexate as a therapy for RA in 1988. By the mid-1990s methotrexate (MTX) becomes the drug of choice for RA.

It usually takes 3-6 weeks to see improvement in symptoms. It takes12 weeks to see the full effect oh MTX.; Folic acid is usually prescribed along with MTX to replace a nutrient depleted during treatment.

Methotrexate is frequently used in combination with other traditional drugs as in triple therapy of methotrexate, sulfasalazine, and hydroxychloroquine. It is also used in combination with most of the biologics.  This combination improves the effectiveness of the drugs.

Gi symptoms such as stomach upset, and diarrhea are quite bothersome for some. These side effects disappear with time. If they don’t, switching to an injection form of MTX instead of a pill will help.

Regular lab work is ordered to monitor any effects on the liver and kidneys.

Hydroxychloroquine

HCQ, Plaquenil

This was the drug Donald Trump said would cure the covid virus.

Hydroxychloroquine was developed as an anti-malarial drug. It is one of several 4-aminoquinolines. Introduced in 1955, it was found to also reduce symptoms in RA and Lupus. Eventually, it was approved for use in those autoimmune diseases.  For rheumatoid arthritis, it is prescribed for mild, slowly progressive disease.

Plaquenil is also used in combination with other DMARDs for the control of more aggressive RA. For example, it is combined with methotrexate and sulfasalazine to provide a stronger response.

It is important to have regular eye exams as a rare eye disorder can occur while on Hydroxychloquine. The risk can be compounded when a person is also on Tamoxifen for breast cancer.

Hydroxychloroquine is considered safe during pregnancy by the American College of Rheumatology, ACR.

 

Sulfasalazine

SSZ, Azulfidine

 It is a combination of salicylate (anti-inflammatory)) and sulfa (antibiotic). Sulfasalazine was developed in the 1930’s to treat Rheumatoid Arthritis. It was popular in the 40’s but then fell out of favor with the discovery of the new miracle drug, cortisone. It is now back in favor and is frequently prescribed for RA even though not approved by the FDA for RA use. It has become a substitute for those unable to tolerate methotrexate.

Leflunomide

LEF, Arava

Leflunomide is a DMARD and immunosuppressant.  The usual dose is 20mg. It was approved in 1998 for the treatment of RA.  Leflunomide is an alternative when methotrexate is not tolerated.  Alternately, it may also be combined with methotrexate. The half-life is long. Onset takes 4-8 weeks. Side effects: GI upsets, diarrhea. Hair loss in 10% of those on Arava.  

Leflunomide is contraindicated in pregnancy. Leflunomide is capable of damaging a fetus.   For a couple planning pregnancy, it is necessary for both partners to take cholestyramine to eliminate the active metabolites of leflunomide completely.

My view

I have been on all these drugs at one time or another. I was on methotrexate for seven years. The last few years I was on the injectable form. Initially, I did have a problem with diarrhea, but it passed. It helped me about 50%. Significant. I had to stop it when I developed necrosis in radiated breast tissue.

My RA treatment is complicated by my history of three different cancers. My symptoms have worsened. I have used Medrol to see me through until Orencia starts helping which it is at three months. Medrol has been a life saver but it has its own problems.

Hydroxychloquine was not helpful either alone or in combination with other drugs. Sulfasalazine made me sick. I think the sulfa didn’t agree with me. Leflunomide was no help either.

Next

Next topic will be on the TNF inhibitors. This class of biologic drugs is usually the first biologic giver to a patient.

Reliable resources

American College of Rheumatology                

American College of Rheumatology

Johns Hopkins Arthritis Center                             

Johns Hopkins Arthritis Center

Creaky Joints                          

CreakyJoints – Arthritis Support, Education, Advocacy and Research

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As RA progresses add tools to help.

I live in Albuquerque. We have blue skies. We have beautiful night skies.  It gets very hot in July, and it gets very cold in January. The rest of the time our weather is comfortable although you do need a good furnace and a dependable AC.

We just elected a Democrat to Congress. My son and I were going to skip voting this time. My son is registered Republican, and I am registered Democrat. One day a Republican volunteer stopped by to chat. She spoke the recent Republican non-sense like masks don’t work. Remember I am a nurse. I went inside and talked to my son. We both immediately ordered our NM absentee ballots.  Of course, voted Democrat.

I have been on Orencia over two months. The massive swelling, I had in my feet is gone. The swelling in my hands and wrists is reduced although I have lost function in my left hand. The degeneration in my back is extremely painful.

Dressing is an exhausting procedure. A night gown works better than pjs as it slips over the head and then it is done. Getting the legs into the pants of pjs can be difficult. I have been tempted to live in my nightgown. However, I haven’t reached that point yet. I have a down comforter with a duvet on my bed for a cover and I have a fitted sheet over a heated mattress pad. Light and comfortable. Easy to live with.

I have a dish of bird seed on a table out my bedroom window. Birds stop by and nibble. We have a young Rock squirrel who packs it away. He is taking the seed home to his burrow. He is young and small so can’t carry as much as a grown squirrel. Cute fellow. He will like my cherry tomatoes.

My Rheumatoid Arthritis is progressing at the same time my entire spine from the cervical spine. the thoracic, lumbar and sacrum is progressing. The pain in my thoracic spine wraps around my rib cage. So, any movement that compresses my chest or abdomen is excruciating. Sometimes breathing is difficult.

I have brought my hip replacement reacher Sammons Preston – 73321 Easireach II Reacher, Compact 15″ Ergonomic Reaching Aid with Magnet, Portable 4.9 oz. Magnetic Grabber Tool & Reaching Claw, Aluminum Trash Pickup, Lightbulb Remover: Amazon.com: Health & Personal Careback into use. It is very handy for picking up things.

I have a leg lifter Amazon.com: RMS 35 Inch Long Leg Lifter – Durable & Rigid Hand Strap & Foot Loop – Ideal Mobility Tool for Wheelchair, Hip & Knee Replacement Surgery (35 Inch Long): Health & Personal Care from Amazon. It is helpful getting in and out of bed. Both are inexpensive tools that make life easier.

Humans are good at adapting. It is wise to accept the times when we need to adapt. No anger. No regret. Instead, we need to focus on what we need to do to make lives better for ourselves.

RA treatment

Drugs are the basis of the treatment plan for RA. A series of protocols designed by the American College of Rheumatology, ACR, direct the treatment of rheumatoid arthritis in the American community. Information regarding these protocols can be found on their webpage. American College of Rheumatology.

  • DMARDs, Disease Modifying Anti-Rheumatic Drugs are a category of drugs that reduce the symptoms of RA and slow the progression of the disease. These drugs can not cure RA, but they can make a patient feel better and they can delay permanent damage caused by the disease. This category of drugs includes:
    • the traditional chemical drugs, like methotrexate
    • biologics, like Orencia and Humira
    • Janus Kinase inhibitors, the JAK inhibitors, like Xeljanz, Tofacitinib                                                                                                           
    • the biosimilars, Amjevita (adalimumab-atto)  is a biosimilar of Humira 
  • NSAIDs, Non-Steroidal Anti-Inflammatory Drugs, are a class of drugs that reduce the inflammation of RA. These drugs relieve some of the symptoms of RA, but they do not change the course of the disease.  Examples are :
    • Aspirin
    • ibuprofen
    • naproxen
    • Voltarin ointment
    • prescription NSAIDs such as Mobic, Voltarin and Celebrex.

Over the counter drugs (OTC) are sometimes over-used because people think that since they are OTC, they must be safe. They are safe only if their cautions are respected. Aspirin and ibuprofen can be dangerous drugs.

  • Steroids, like prednisone and methylprednisolone, are powerful drugs that relieve symptoms of RA. They are used to calm the symptoms of a flare. They are used as bridge therapy., calming symptoms until the DMARD starts working. They are also used to help control symptoms of severe disease.
  • Analgesics start with ibuprofen and naproxen as noted under NSAIDs.  Tramadol is a weak opiate that is frequently used for RA. Norco and Lortab are combinations of acetaminophen/hydrocodone. Acetaminophen  is not very effective when used alone for RA, but it boosts the pain relief when used with hydrocodone. Remember about a third of those with RA do not respond to RA drugs.

There was a time not far in the past when doctors started RA treatment with a NSAID like ibuprofen. DMARDs were not started until joint damage was noted.

Although NSAIDs can reduce inflammation, they will not slow the progression of the disease.

Today RA patients are started on a DMARD usually methotrexate.  Those with a milder disease might be started on hydroxychloroquine, Plaquenil. After a few months, a combination therapy might be tried. After a few months if there is no improvement, a TNF inhibitor, a biologic, might be started.

Most of the drugs for RA depress the immune system and will increase the risk of infection.

This is the first in a series of articles about treatment for RA. Next will be an in-depth report on the first line of treatment the traditional chemical drugs like methotrexate and Plaquenil.

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RA Solutions Gardening

I have the misfortune of having a painfully, progressing rheumatoid arthritis. My RA started when I was older. An older onset RA tends to be more severe like it is trying to make up past time. After eight years, most of my joints are affected. I have neuropathy in my feet and joint damage in my hands and feet. I walk with a cane when I’m out and frequently use a walker to get around at home. I am disabled. It has taken me a long time to admit it. But the upside is that I can make changes to my life so that I can manage in spite of disability.

The long cozy nights by the fire have given way to the longer days of spring. It is time to be out in the garden. My roses were amazing all through May. My clematis is covered in large dark blue flowers. Hosta fill one corner of my patio. All my herbs have renewed themselves. I enjoy the fruits of past garden labors and am encouraged to keep working in my yard.

My favorite Clematis

In the last few years, I have started using more pots for my gardening. Pots don’t require the down on the knees work that a regular garden bed requires.  Fill a pot with soil. Add fertilizer and a plant. Water and you are in business.

Herbs are easy to grow. I have thyme in a pot with a small tree. Parsley reseeds itself and does well unless the quail find it. I added a dianthus to its pot for color.

Mint is in its own pot. I have a pot with an old chives plant coexisting with oregano. My French tarragon grows in a raised bed and is happy with the dry heat.  The plant is about four years. Rosemary is abundant too. Herbs are satisfying to grow especially when you like to cook.

This year I raised a tomato from seed. It is an amazing and sturdy cherry tomato called Tasty Treat; It is a Burpee seed that is no longer being produced. This year my ambition is to collect the seeds from my tomatoes and then try to grow them next year.

 I am decreasing my physical time in the garden. Instead, I am developing new skills with growing seeds in a nursery and starting plants from cuttings. I keep low maintenance plants and easy to use tools.  I can keep my interest in gardening even as I am less physically able.

Last year I traded in my heavy garden hose for a lightweight expandable hose. It is a lifesaver. Light and easy to move. These hoses are more fragile than the heavy hoses. The trick is to buy one of good quality and to take good care of it. Mine is in its second year.

Being given the diagnosis of RA is a heavy life sentence. To live it requires determination. But it mostly requires the ability to adapt your lifestyle to your body’s changing needs. A good sense of humor helps.

Celiac’s Disease not RA

Gluten is not theculprit in RA, but Gluten is the culprit in Celiac’s disease. Gluten is a protein found in wheat, barley, rye, and triticale. The small intestine becomes inflamed and damaged when a person with Celiac’s disease ingests food such as bread, beer, cereal, or other foods that contain gluten. As damage occurs to the small intestine, it becomes increasingly difficult for the intestine to absorb nutrients.

Celiac’s disease is an autoimmune disease. It is commonly paired with the autoimmune diseases of the thyroid (6%) and type1 diabetes (6%) There is also an increased risk associated with the following: Sjögren’s disease, MS, Autoimmune hepatitis, and arthritis (but not RA).

Those with Celiac’s disease and those with a gluten sensitivity should not eat foods containing gluten, such as bread, pasta, and cereal.  The gluten will make them sick.  A gluten free diet is the cure for Celiac’s disease.  Those with Celiac’s disease may experience joint pain but it is not the destructive arthritis of RA. The joint symptoms will lessen as gluten is eliminated from the diet.

Oats are gluten free unless produced near wheat. To be sure there was no contamination with gluten during production, the oats or oatmeal you buy should be labeled gluten free.

Celiac’s disease is under reported.  If you find relief from a gluten free diet, you may have a gluten sensitivity.

Gluten is not usually the culprit for those with RA. Ulcerative colitis, an autoimmune disease of the lower intestine, can be linked with RA. Crohn’s disease, the other inflammatory bowel disease (IBD), is linked genetically to RA as it is also linked to psoriatic arthritis., and ankylosing spondylosis.

Those with RA have GI issues. They may an IBD, or they may be something else. Diverticulitis is a growing problem for those with RA as is intestinal perforation due to it. Problems may arise anywhere along the GI tract. Those with RA may experience nausea, diarrhea, a feeling of fullness after eating a small amount, stool leakage plus all the others you might think of.  The culprit may be the inflammation of RA and it may be RA medications.

Using Heat and Cold for RA

Heat and cold application can be a helpful tool in managing the symptoms of RA.  Have you mulled the idea of using ice or warm compresses to make your joints feel better, but was unsure what you should use so didn’t do anything? Should I use heat? Should I use ice? The answers are simple and unless taken to extreme, heat/cold applications are non-invasive, safe, and helpful for many arthritis sufferers.

In sports medicine Ice is used for an immediate injury such as an ankle sprain. We have all experienced the call for ice after someone falls or is hit in a sports event. When applied to the skin, ice causes the local blood vessels to constrict. This slows down the circulation and will reduce new inflammation and swelling to the affected area.

 Ice will also numb the area quieting pain receptors and reducing pain. Ice from the ice chest or a very cold soda can are usually available at a soccer game or similar sports game. It makes ice an easily obtainable, useful remedy. Ice is a short-term effective tool. After a couple of days, ice loses its effectiveness.

Then it may be time to switch to a 0heat application. HEAT will increase blood circulation to the local area. This increased blood supply will carry away excess fluid and debris clearing swelling that is already present. Heat also relaxes the tense muscles and feels soothing. Those with RA find that heat loosens tense muscles, tendons, and ligaments.  The heat reduces established swelling. You may use wet or dry heat. We heat penetrates more efficiently. Heat comes from many places. Warm baths. Hand washing the dinner dishes. Paraffin wraps. The shower. Pads heated in the microwave.

To protect the skin, a thin towel should be placed between the skin and the heat source. For moist heat, wet the thin towel before placing it between the skin and the heat source. Avoid excessive heat.  Don’t use heat continuously. It will decrease its effectiveness. While you are using the heat, keep your affected part elevated while you are at it.

RICE is part of the standard treatment for a sports injury such as a sprain.

Rest

Ice

Compression

Elevation

Cold compress 20 min every 4-6 hour for 3 days might.be used for an acute injury like a sprain. Some with an RA flare use ice to calm an unruly joint. The area is temporarily numbed and feels good. Cold should only be used temporarily for a few days.

Years ago, I was fortunate to attend physical therapy for my hands. I learned exercises to keep my hands flexible. The sessions always ended with a paraffin wax treatment. My hands were never happier.

Mary’s RA Journal

Mary’s RA Journal

May 2021

Year nine

I was diagnosed with RA eight years ago. The onset seemed sudden. But was it? My RA started in my feet. I was one of the 20% whose symptoms started in their feet. My internist thought I was too old to have RA. He seemed to think my feet were fine. As recent as eight years ago, rheumatologists did not routinely examine a patient’s feet. They believed RA started in the small joints of the hands. Examining the feet was inconvenient. Examining the feet took too muctook to much time.

My symptoms increased. My pain became severe. I was very sick. As a victim of an unresponsive healthcare system, I finally sought relief in the ER. I was fortunate to be seen by a knowledgeable doctor who treated me and sent me to a rheumatologist. My career as a rheumatoid arthritis patient began.

I spent years on methotrexate which helped me about 50%. I tried most of the biologics in between being treated for three different cancers.  Orencia worked.  Most did not. Then I developed the 13th black box warning for methotrexate, soft tissue necrosis. The necrosis was in radiated breast tissue and it took ten months and a surgery to cure. I no longer had a DMARD, disease modifying anti-rheumatic drug, to treat my RA. My trusty methotrexate was no longer trustworthy. Because of my cancer history and my adverse reactions to a variety of drugs, I was running out of options.

Rheumatoid arthritis is about inflammation. The inflammation does not stop at the joints. My RA has affected the small joints in my inner ear giving me intermittent hearing loss. It has caused inflammation in my eyes. My eyes become inflamed and my vision blurry.  My GI system is messed up.

My RA continued to worsen. Rheumatoid arthritis is listed as a progressive disease. How does it get worse? It is more than joint deformity. The progression seems insidious at first. Flares. Fatigue. The time between flares gradually becomes shorter.  Now I am in pain constantly. I feel sick. Even my pointer fingers hurt as I type this into my computer.  Walking and standing are not easy on swollen feet.  Swollen hands are as bad. The edges of my symptoms are blunted temporarily by enough Medrol and tramadol.  My hands are deformed. My right hand deteriorated over time.  The deterioration of my left hand was sudden. Over a period of a week my left hand became swollen, warm and in acute pain and quickly deformed. I did not think it was possible to happen as quickly. My feet and ankles seem permanently swollen. Wrists, elbows, knuckles, shoulders, back, jaw, neck.

The only biologic left for me to take was Orencia. I had been on it by infusion for a year in the past. After a year I developed a flu and the Orencia stopped working. Actemra had been a possibility but listed as one of its risk factors was a ruptured intestine due to diverticulitis.  Those with a history of diverticulitis, should not be on it. A study found that among those on Actemra, there were 2.6 times the general population rate of ruptured diverticulitis. I did not want the risk.

So, it was determined that I would try Orencia by injection. I have been on it for seven weeks. I feel no different. My swelling goes up and then down and back up again.

The stats say that Orencia will reduce symptoms 20% at three months for half the RA patients. That means a 20% relief if you are a lucky one.

Orencia reduced symptoms 50% at six months for half the RA patients. Less than 10% of patients had more relief. None went into remission.  0rencia retails for $2700 a month.

I am a cheerful, optimistic person. However, as my options run out and as more limits are placed on my daily life, I find myself discouraged. The RA hill of disability that I pull myself up and over every day is getting steeper. The climb is a struggle and the outcome less sure. I am no longer hopeful today. I already know what tomorrow can bring.

I wrote this yesterday. Being discouraged is okay. It is okay to pause, to take a break. Having a painful disability is exhausting. Then after the pause, it is time. It is time to gather your resolve and make this very day the best you can. Life is good after all.

Inflammatory Bowel Disease

IBD

Inflammatory bowel disease is an autoimmune disfunction that has genetic plus environmental components. It has been around for centuries and was once commonly fatal. It is a young person’s disease but can occur in older adults.  The cause is unknown. It is not curable.  The immune system reacts inappropriately to environmental triggers causing inflammation in the gastrointestinal tract.

There are two main types of IBD.

Ulcerative colitis attacks the colon and the rectum. It affects only the mucosa, the membrane lining the intestinal system and the inflamed tissue is continuous.

Crohn’s disease can strike any part of the GI tract from the mouth to the anus. It can affect all the layers of the intestinal wall. It frequently affects the end of the small intestine. Inflammation may occur in patches where there is an area of inflamed tissue next to  0an area with no disease.

Diagnosis is most commonly made between the ages of 17 and 35.

There are about 80,000 children (under age 20) in the US. It is about 5% of the IBD population. Children have a more severe course than adults. Growth can be affected.

Men and women are diagnosed equally. Women may have difficulty with pregnancy when their disease is active. Men are more likely than women to be diagnosed in their 50s and 60s.

Symptoms include diarrhea, abdominal pain, fatigue, weight loss and bloody stools. About a third also have arthritis.

Malnutrition can be a problem for a number of reasons including the intestinal system failing to absorb nutrients, failure to eat, side effects of drugs.  Treatment today includes diet, drugs including the biologics, surgery, and supportive care.

After 30 years of disease about a third of those with ulcerative colitis will require surgery, removal of the colon and rectum. About 70% of those with Crohn’s disease will require surgery.

IBD is common in those with RA. It is more common in those with fibromyalgia, psoriatic arthritis, and osteoarthritis. RA, IBD and psoriatic arthritis are autoimmune disorders.

The following is a website that includes information on helping children with IBD:

Homepage | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

Many states including Colorado and Texas have passed a restroom access law or Ally’s Law. This law allows those with a medical condition (IBD) to access the employee bathroom when a customer restroom is not available.

Crohn’s and colitis

Crohn’s Disease & Ulcerative Colitis Information (crohnsandcolitis.com)

Restroom Request Card for Crohn’s Disease & Ulcerative Colitis (crohnsandcolitis.com)

Sitorsquat app developed by Charmin to help you locate the nearest restroom.

Restroom Near Me | Sit or Squat (charmin.com)

What IBD is not:

IBD is not irritable bowel syndrome (IBS) which is a collection of GI symptoms not caused by inflammation.  It is not Celiac’s disease, an autoimmune disease, which is caused by an inflammatory response to gluten in the diet.