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The state of RA pain Management

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State of pain management

Pain is a familiar companion for those of us with rheumatoid arthritis. It comes in a variety of forms. Sharp. Aching. Burning. Itching.  Sometimes all at once. When my pain is at its peak, I slather my joints with Voltaren (diclofenac).  It is soothing and helps the itching. About 6% is absorbed into the system.

The problem with the power of pain is that it can be incapacitating. Unrelieved pain will open the door to depression when pain is not relieved and daily responsibilities remain the same.   So before going down that dark, dreary road, figuring out how to manage your pain is something you will want to do.

  • First, if you have RA, you will have pain. Even with a successful biologic, relief will only be 50% at best. You might recognize that you need to modify your life to accommodate the changes in your body.
  • Your rheumatologist may be one of those people who feel if a patient’s inflammation markers are not elevated, they will not have RA pain. That notion has been disproven and if your Doc is stuck in that orientation,  maybe it is time to change doctors.   I’ve always had the pain first and the markers second.
  • You recognize you need pain relief. NSAIDs are the first step. Drugs like ibuprofen and Aleve relieve inflammation and give pain relief. They work well for many people. The problem with aspirin is that it takes too high a dose to be effective and the side effects are serious.
  • Pacing is also a useful tool. It is working in batches while resting in between. It is sitting to do some of your tasks that you normally stand to do. For instance I peel potatoes while sitting. I make dinner in steps.

Late in the nineties rheumatologists found tramadol to be a good alternative to NSAIDs. Tramadol is a weak synthetic opioid that is not considered to be highly addictive and is a solution for those unable to take the NSAIDs. Eventually abuse of the drug developed. Early on it was doctors and nurses who were misusing the drug.  So now it is a controlled substance. A shame.

  • Those people who live with chronic pain have other barriers to relief. Opioids have become discredited. Doctors are afraid to prescribe them.
  • Because of the numerous side effects, NSAIDs have also been discredited for older people.
  •  Doctors do not like prednisone either. For those who find relief with prednisone,  they might be out of luck if their doc doesn’t  care for it.

The same doctors have no trouble prescribing expensive drugs that are risky to take. Drug companies will clearly tell you how dangerous their drugs are for us, but rheumatologists make good salesmen who minimize the risks.

  • Today gabapentin is a drug of choice for pain relief in the medical community. Officially, gabapentin  is a drug for seizures and for neurogenic pain. It calms the brain and changes the way the body perceives pain. It has been shown to reduce inflammatory mediators in mice. I find it to be helpful and docs like it for now.
  • Adding acetaminophen, one tablet, regular strength, to tramadol reduces the amount of tramadol that you need.
  • Low dose prednisone (8 mg) is acceptable for people who have RA that refuses to come under control. It is considered a last resort for those with uncontrolled RA although it is used early in RA as a bridge therapy. For me it is the best pain relief.

For those who need stronger pain relief, you may need to see a pain management doc. I will be happy to see the day when doctors are less paranoid about pain medication and more concerned about pain relief for their patients.

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Sourdough English Muffins and progress

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I have always liked English Muffins but I have come to the conclusion that  the Thomas brand or any other facsimile are tasteless and not worth the toasting.

That was one reason I decided to make my own. Another was that I needed to replace my scone project.  I was having great success  and especially liked the maple pecan oatmeal scones. But I needed to turn my energy to something more complicated, something that took longer to produce,  something with less sugar and fat. I turned to Bob, my sourdough starter, and to King Arthur, my favorite flour and baking site.

King Arthur taught me how to make a sourdough starter and provided me with a foolproof recipe for sourdough English Muffins. It is different than other bread recipes. For those who don’t know, English muffins are not baked. They are cooked on a griddle. I used the dough hook on my mixer for the kneading. It works well and saves my mangled RA hands. My plastic cookie cutter did not cut through the dough as cleanly as I would have liked.  I thought my first batch was better than any store- bought muffins I have had. Success.

My Texas son had given me a gift certificate for King Arthur on my birthday. I decided to go ahead and buy their English Muffin rings. At that point I considered the rings a luxury and not really necessary.  They look like 4-inch cookie cutters and there are twelve of them. They cut through the dough cleanly

I made my first batch with the rings and  I am amazed. My English Muffins  taste better plus they look professional. I have one more refinement and then I will take pictures.

Not long ago I was in severe pain with my rheumatoid arthritis compounded by degenerative joint disease of my spine.  I was close to being bedridden. What changed? I started seeing a pain specialist. I continued on with my weekly injections of Orencia, gabapentin, and a daily low dose of Medrol (8 mg).

She made a simple change.  She changed my tramadol from three times a day to four times a day. Plus, I am on a regular schedule. They are little tweaks but they have made a big difference for me.

I function much better with pain relief. I am able to be much more active. I am able to carry on with the projects that make life worth living like feeding Bob and making English Muffins.

RA is painful and it is disabling.

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My rheumatoid arthritis has gotten worse over time. My affected joints include those in my hands, my wrists, my elbows, mt shoulders, my jaw, my cervical spine, my ankles and my feet. My eyes as well as my ears are affected.

I no longer have flares. Flares are something that comes and goes. I am always inflamed, and I am always in pain. My lowest level of pain is three. I am usually at a pain level of five. And my pain level reaches a seven several times a week.

I am on Orencia. It is working. I would be at a pain level of seven all the time if it weren’t. There are few other choices. Some don’t work, some caused complications, some are contraindicated because of my three cancers. I can’t take NSAIDs either. I do take tramadol. Synovial tissue has opioid receptors. It helps.

I think I have just ticked over to another level of disability. Frustrating. I think of our club of rheumatoid arthritis sufferers. There are too many of us.

My sympathy goes to younger women with children to raise. Jobs. I was relieved when I retired. Those with RA suffer from depression. No wonder. Too much is expected of them.

Finally, the scientists have learned that RA can cause pain even when the inflammatory markers are normal. I could have told them that.

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The quail, the roadrunner and me

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Journal 01/27/2022

Our weather is cold, 36⁰F, 2.2⁰C. Sunny. Blue sky. Dry mountain air. Many people think that since we are in the  Southwest, we would be warmer in the winter. Our altitude is close to a mile high. It is mountain desert weather. When the sun goes down, there is nothing to keep the warmth of the day. Our nights are cold in the teens and our days in the thirties. In July we are high nineties and sixty-five to seventy at night.

I enjoy the colder weather because I can turn on my gas fireplace. The room becomes a cozy refuge. A good place to be. Outside my son keeps our bird feeders full so we have a steady stream of Gambel quail, house finch, sparrows,  mourning dove looking for seed. Then there is the Greater Roadrunner looking for birds to eat.

They are powerful and aggressive. They have large beaks and large claws. They move fast. Intimidating.  I’ve seen them tear a bird apart. They have no fear. They own the earth. The roadrunner is at the top of the food chain and the quail at the bottom. Quail travel in groups. I’ve seen nine little chicks grow into teenagers and then into robust adults. Quail are  hunted in New Mexico. Survival is a challenge on many fronts. So far, the quail in my yard are safe.  No human hunters. But then,  there are the roadrunners. Life is uncertain for all of us.

Today was an important day for me. I traded in my driver’s license for an ID card.

I haven’t driven for several years. I stopped when I understood that my numb feet couldn’t feel the foot pedals on my MiniCooper. Stick shift. It was scary. I don’t miss it.

I got my driver’s license when I was twenty-two. My family didn’t have a car.  I didn’t learn. I bought my first car on a learner’s permit. Practiced. Took the exam. Passed and have driven ever since. I had an international driver’s license while I lived in Europe and drove on the autobahn. I have driven cross country several times. I am done. Happy to travel as a passenger. A milestone.

Life goes on for me as it does for my quail friends. We live our daily lives doing what is natural.  Staying clear of the bumps in the road.  Enjoying the sunshine. Being grateful we avoided the roadrunner for another day.

Rub it on, Ointments for RA

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There is an entire world of ointments for arthritis relief out there in the marketplace. Many come in colorful packages that have claims just short of miraculous. Then there are the generic ointments in their plain packages. Be aware that ointments with the same ingredients can come in a wide range of price. Flashy packages are usually more expensive. Ointments can be powerful solutions for joint pain. So, checking them out is time well spent.  

Ointments are pain relievers that are absorbed through the skin. They work best on joints that are close to the skin. For example: they would work better for the hand joints than they would for the hip joint.

Active ingredients for topicals include

  • salicylates, such as methyl salicylate
  • menthol
  • camphor
  • NSAIDs
  • lidocaine
  • capsaicin
  • Hemp oil
  • Homeopathic arnica

Some formulas have  combinations of  the active ingredients.  These preparations may be applied as a cream, spray, roll-on, or patch. Methyl salicylate, camphor  and menthol are frequently found together in various combinations and various strengths.

BenGay is one example.

BenGay was developed by Dr. Jules Bengué and brought to America in 1898. There are a number of different formulations. The active ingredients of the original formula have 18.3% methyl salicylate, and 16% menthol. The BenGay Ultra Strength has 30% methyl salicylate, 10% menthol and 4% camphor. The BenGay Arthritis Extra Strength is 30% methyl salicylate and 8% menthol. Be sure to read your labels sp you will get what you want.

Tiger Balm combines camphor and menthol plus botanicals to boost effect.

There is a variety of Tiger Balm products made in Singapore and there are other formulas made in India. The most potent form made for the USA is Tiger Balm Ultra with 11% camphor and 11% menthol.  Tiger Balm also includes other ingredients, such as  Cajuput oil and clove oil.  Although they are labeled as ‘inactive ingredients’, they are not inactive.

Biofreeze Arthritis Pain Relief Gel relies on a formula of botanicals with only 4% menthol as the active ingredient. The ‘inactive ingredients’ are a formula of herbal associated substances, including camphor and arnica.

Salonpas

Salonpas is a patch that contains 10% methyl salicylate, 3% camphor, and 6% menthol. It comes in different sizes and another choice is with Lidocaine.

A NSAID in a gel, Diclofenac 1%

 Diclofenac 1% is a nonsteroidal anti-inflammatory drug, a NSAID,  that absorbs into the skin to help relieve pain in joints. It is used for osteoarthritis and has been successfully used by those with RA. It also relieves RA pain caused by itching. It is an NSAID that works locally without the side effects of stomach upset. About 6% of the diclofenac is absorbed systemically.  It is available over the counter and by prescription. Voltaren Gel is a brand name for diclofenac 1%.

An anesthetic in a cream, Lidocaine

A numbing anesthetic available as an ointment and a patch. It is available OTC and by prescription. Aspercreme makes a variety of formulas with 4% lidocaine. Ebanel Numb520 is 5% lidocaine.

Hot Stuff

Capsaicin is an active component of chili peppers. Capsaicin works by changing the perception of pain. The mayo clinic recommends using capsaicin creams several times a day for joint pain. It is also available as a patch.  The standard strength is .1%.  Capzix is a common brand for $12.99

Hemp oil

Hemp oil is frequently combined with botanicals for pain relief and to reduce inflammation. Hempcreame is an example. This cream contains hemp oil, turmeric, aloe vera, arnica, Boswellia Serrata, and menthol.

Homeopathic

Homeopathic medicine uses highly diluted substances. Arnica Montana formulas are popular homeopathic creams used for osteoarthritis. T-Relief Arnica+12 is a good example.

There are many products that contain a lengthy list of ingredients listed under inactive ingredients.  Many of these ingredients are not inactive. There seems to be  a tacit understanding in the pharmaceutical world that ingredients may be listed under inactive ingredients as long as these ingredients contribute to the product. The FDA doesn’t recognize the therapeutic value of these ingredients although many have been  helpful herbal remedies for centuries. Boswellia and arnica are examples.

Many of these products have persuasive marketing schemes that can be misleading.  Australian Dream, active ingredient, histamine dihydrochloride,  has been tested and found not to be any more effective than a placebo. It has impressive ads and is expensive. If it helps you, it probably is the placebo effect.

Then how do you choose?  The first thing to look at is the list of ingredients.  They will probably be one or more of the traditional ingredients. But then check the inactive ingredients to see if there are any that are a concern for you. Compare several formulas.

Trial and error seem to be a common approach to arthritis drugs. The process is the same for ointments. Don’t be misled by flashy packaging and exaggerated claims. Check the list of ingredients. Frequently the cheaper ointment has the same strength of medication as the more expensive one. Sometimes not. Best to compare.

I have added a few links in the article to help you find something that will work for you.

A sourdough distraction

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I am working on an article about ointments for RA. It started out as a simple piece but the more I looked, the more there was. So, I decided to pause it and write on a topic close to my heart and less complicated. So here goes.

My sourdough experiments.

My pain levels are in the red more often than they are in the blue. I woke up this morning in a level six even though I had taken Tramadol during the night. It is frustrating and discouraging as well as painful. My pain level rarely goes below a 4, but at that level I can function and carry on with my daily activities. Once it hits 5, I have a harder time. You can imagine what happens with a 6.

Distraction is a technique that will work for me for a while. I have several favorites. One distraction  is managing my sourdough project. Last spring I decided it was time to learn how to make sourdough bread. I bought a starter from King Arthur Baking Company and got to work. Once it is established a starter will continue to live as long as it is fed with more flour and water. Before feeding it, I discard an equal amount of starter to control the volume.  I found I enjoyed checking on my starter. It is satisfying to look into the crock and see it bubbling happily.

Since I spent the summer with weekly wound clinic visits, I neglected my starter and it died. In the fall I was ready to start again. This time I made my own. I used whole grain rye flour which is best for creating a starter. I followed King Arthur’s directions. After many repeats of feeding and discarding, my starter was created.  I decided to name him Bob since he is alive, and I do have to feed him. Keeping him on the kitchen counter works better than keeping him in the refrigerator. I feed him every couple of days, but I look in on him every morning.

I have been making sourdough English muffins. They are easy to make and so much better than store bought. This last time I decided to make them bigger. That was fine but I made them too thick. Next time I will make them big but thinner so they will crisp up better when toasted. Perfection.

Many times, my RA is just too painful for baking projects.  It is a time to rest. I can read about my next sourdough recipe. And I can have a toasted English muffin with my coffee.

RA and release from cancer memories

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It has been three years since my last cancer. Through the surgeries, the chemo and the invasive radiation, I plodded along one foot in front of another.  And in all those moments,  I  was slowly being ground down into nothing. And at the same time I felt nothing. I kept my head down and did what was expected of me. I was exhausted. Bald. Drained. Gutted (literally). Nothing left. The daily reminder was a port in my chest waiting for the next infusion of chemicals.

Some would say I was lucky. I didn’t feel lucky. I felt that what I was no longer existed. I was so glad when that year was done. I wouldn’t have to hold on so tightly. I wouldn’t lose any more of me.

Lately I have been thinking about that time. I am no longer numb. I can feel those lost feelings now. My memories make me feel sad.  I mourn for the me that was and the time lost forever. Like waking up and realizing the dream was reality. I felt the pain of realizing I had cancer. I felt the pain and loneliness of treatment. I was no longer required to suppress my feelings. It was painful but it was also a relief.

My body  also has rheumatoid arthritis. And in spite of my cancers and the complications of one thing or another, it is  the one thing that is a constant in my life. Rheumatoid arthritis might not  kill me but it certainly makes me live with a pain wracked body. Every joint in my body is affected.

So I suppose it is the RA that dampened my response to the cancers I have had. Having cancer treatment and RA flares at the same time is rough. Suppressing the whole experience was one way of living through it. My cancers are gone for now and I can finally feel relieved.   I expect that I have another year or two before another cancer shows up. It may be a repeat, but more likely, it will be a new one. However, in another year or two I will have regained my strength and my mojo. It has taken longer this time.  I will be able to handle whatever comes. After all this time I am finally recharging

methotrexate complication

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My experience with methotrexate black box warning: soft tissue necrosis.

There is another dilemma to face when you have rheumatoid arthritis. I was surprised by this one. After all, I have had RA for seven years and feel I have covered a lot of ground in that time. I know infection posed a very high risk while taking RA meds. My mind thought flu or maybe pneumonia.

Suddenly and out of the blue, my right breast developed a lesion and stated to drain. I felt feverish and went to see my oncologist who sent me to the breast surgeon oncologist down the hall because she was the one who had the ultrasound machine. She came in, introduced herself and looked at my lesion. She instantly knew that it was caused by necrotic breast tissue due to radiation for breast cancer. The radiated tissue gradually degenerates, expands until it pushes through the delicate breast skin and drains. It cultured positive and I was sent to the wound clinic.

Eventually, it was determined that the only solution was a partial mastectomy. That done and a week later, I developed a severe infection and cellulitis. The incision had popped open and sprung a leak. I was treated with antibiotics. I was again sent to the wound clinic. The nurse debrided the wound.  I was instructed on packing the wound (deep) with iodophor. Eventually, the drainage lessened. The iodophor packings were stopped. Inserting cellulose/collagen/silver slices were started. Progress is being made.

Now for the RA dilemma. Both oncologists insisted I stay off methotrexate. They felt if I would continue methotrexate, I would have a repeat of breast necrosis. The radiated tissue will always be problematic, but the methotrexate will make it worse. I agreed. No more methotrexate. I didn’t want to have to deal with another wound for another ten months.

Soft tissue necrosis is black box number thirteen for methotrexate.

I had been on methotrexate for seven years. Initially, I suffered through the usual side effects, but over time the symptoms disappeared especially once I started taking methotrexate by injection. It helped keep me even. I still had problems, but my base line was much better. Now I am having worsening flares.

The difficult part for me is that I have many joints affected. In a flare with all of the joints spewing inflammation factors, I start feeling sick. It feels like a flu. So, in addition to joint discomfort, my whole body feels ill.

This complication took ten months to heal. The ten-month ordeal was caused by a combination of factors. I had radiated breast tissue which normally has poor circulation. In addition, I was be medicated with injections of methotrexate. Soft tissue necrosis was the thirteenth black box warning of methotrexate.

Prednisone and Medrol are Glucocorticoids.

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Glucocorticoids (GCs)

Glucocorticoids are naturally produced by the adrenal glands which sit atop each kidney. The adrenals support the body in times of stress. They calm inflammation in the body.  Unfortunately, during the inflammation caused by RA,  the adrenals do not produce enough glucocorticoids to suppress the inflammation.  Synthetic GCs provide relief because they are like the body’s natural supply of cortisol.

Glucocorticoids were first administered in 1948 by Philip Showalter Hench to treat RA. Over the years the glucocorticoids have become refined and have become lifesaving in RA as well as in many other diseases such as Lupus and asthma.

The following are common glucocorticoid preparations: prednisone (Deltasone, Medicorten, Orasone), methylprednisolone (Medrol), Betamethasone (Celestone), Solu-medrol.

  • Prednisone is used initially with a DMARD such as methotrexate at disease onset to relieve symptoms of RA until the DMARD become effective. This is known as bridge therapy.  Noted in the Annals of Internal Medicine 2012: a study has shown that adding prednisone to methotrexate early on combine to produce less joint damage, less physical disability, and reduced disease activity.
  • Dr. John R. Kirwan, of the University of Bristol Academic Rheumatology Unit suggests that prednisone along with another DMARD should be considered the gold stand of early treatment.47
  • Prednisone or methylprednisolone is also used during a flare to relieve symptoms. A Medrol dose pack may be ordered. A Medrol dose pack is a regimen of Medrol given at specific times over six days. Low dose prednisone may be given at 5-10 mg daily until symptoms subside. And then the prednisone is tapered downward.
  • Medrol is useful for maintaining disease control during pregnancy when most DMARDs are contraindicated.
  • Glucocorticoids are used for intra-articular injections where one or two joints are involved. GCs are administered in high doses IV for treating organ-threatening disease caused by RA.
  • Prednisone or Medrol may be used  on a regular basis for patients with severe disease not managed by DMARDs. Low dose therapy is under 10 mg a day for prednisone and 8 mg for Medrol. Medrol 4 mg=Prednisone 5 mg

Oral  prednisone should not be stopped abruptly. It should be stopped gradually to avoid withdrawal side effects. Frequently, calcium and vitamin D supplements are encouraged.

Long term, high dose use of these drugs can contribute to the development of osteoporosis  and spinal fractures. Side effects are serious but are not worse than the side effects of many of the DMARDs.

Excerpt from My Rheumatoid Arthritis Handbook to be released late summer 2022.

RA treatment is still lacking

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Before methotrexate and the biologics became treatments of choice for RA, methotrexate in the 1990s and the first biologic in 1998, there wasn’t much that worked. Patients were given  injectable gold, lots of aspirin. Sulfasalazine was the first drug to target RA but is was soon overshadowed by a rough form of the new steroids during  1950s.  So, RA treatment has come a long way with the acceptance of methotrexate and the development of the  biologics. But has it really come that far? According to the Cleveland Clinic only 30% of those treated with biologics have a technical remission. Thirty percent have no relief  at all and the rest range in relief from 20% to 50%. And those numbers only reflect those patients who are being treated.

The study did not include those who have given up on the medical community including those who cannot afford treatment and  those who cannot afford the expensive  trial and error method of treating RA with  the biologics. It does not include those whose treatment failed. Maybe the drugs worked for a brief time and then stopped. Maybe the side effects and the complications of the drugs were intolerable.

My success with Orencia  falls in the 20-50% range. The first few days after taking Orencia I have severe  joint pain. The pain lessens for a few days and then starts rebuilding before my next dose. I am rarely painless. But I am still better than I am without the Orencia. I have been through all the RA medications. Orencia is the only one working. It is the safest biologic. Methotrexate had worked about 50% but after seven years I developed black box warning thirteen, soft tissue necrosis. I healed after nine months of treatment plus one surgery.

The problems with today’s RA treatments:

  • Trial and error

Matching a biologic medication  treatment to the specific needs of a patient is a trial-and-error process. At this time it can’t be more specific than that. The drug either works or it doesn’t. The only recourse is to keep trying them until one works. Time consuming. Discouraging. Expensive.

  • Expense

Once you pass the basic DMARDs, the costs of RA medications soar. The RA biologics are  some of the most expensive drugs on the market. The VA pays $3000 a month for my Orencia. Down at the drugstore, Orencia is about $5000. My Advantage program has a $300 a month copay for it. The drug companies have coupons that reduce costs.  There are some restrictions and the reduced costs are available for a limited time.

  • Complications

The complications of RA medications are well documented. The most common is severe infection. There are increased risks for cancer and heart disease among other things. Doctors mention these complications in passing. They don’t want to frighten their patients. I have had three cancers, diverticulitis, and histoplasmosis. So my choices are  limited.

  • Nothing works

There are some who have temporary relief from their symptoms. There are some who have partial relief. And there are those who have no relief.

  • New drugs better?

JAK inhibitors are the newest RA drugs. They are DMARDs (Disease Modifying Anti-Rheumatic Drugs.)  They are not biologics. They are pills. They cause cancer like the TNF inhibitors and severe infections, heart disease. Risky.

What does all this mean? It means that although RA treatment has come a long way from the time where a life of pain and disability was guaranteed for those with rheumatoid arthritis, it has a long way to go. Treatment needs to be able to stop the symptoms and bodily destruction of rheumatoid arthritis. Treatment needs to have few side effects and no fatal complications. And it needs to be affordable. Until then, we can stop using the words ‘wonder drug’ to describe rheumatoid arthritis drugs. And we need to keep looking.