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Managing Pain

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What are our choices when we have pain?

Of course the first thing would be to eliminate the reason for the pain. However, with a chronic disease with no cure that may not be possible. So what is the next best thing?

Whichever medicine you are working with, consider using pain medicine on a schedule to reduce the highs and lows and even things out. Remember drugs like ibuprofen and naproxen seem safe enough since they are OTC, but they can become problematic if you take more than the recommended dose.

I have been using Tramadol long before it became a controlled substance. Amazingly, I still find it helpful. It is commonly used for those with RA. Adding a dose of  Tylenol helps. Reviews are mixed. Hydrocodone or codeine work better for some.

Medrol is my favorite remedy, but my Doc feels that the steroids should be used with caution. Medrol does something for me an opiate never could. It gets my vote for flare relief.

To supplement your pain medicine, ointments can be very helpful. They are action oriented. You feel like you are doing something.  I use diclofenac (Voltarin) for itchy joints which can become painful if not managed. Smells good. Diclofenac will also help take the edge off your painful joints.

I use a hemp ointment for my neck, ankles and shoulders. My son buys it for me online. It works. It does smell though. I also use a THC salve for my wrists, knuckles and feet. The ointments help and give me a way of helping my joints.

I use my Thera Bath  paraffin wax treatment for my hands and wrists. It makes my hands feel luxurious and  happy if only for a short time.

Distraction can work. Books. Puzzles. Cooking. But if you are in pain, you may not feel like being distracted.

When I am having a flare, my whole body feels sick. My energy seeps away. Sometimes I just feel desperate. A friend says when she has a flare, she just rides it out. Good advice, too.

A Book and RA at Ten Years

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I am putting together a compilation of my articles about rheumatoid arthritis.  It is a practice book for developing  the skill set of  editing and publishing  a book. My plan is to produce a series of books under the general heading of Nurse Mary’s Notes. These books will translate the medical jargon we hear at the doctor’s office and on the internet into a language we understand and find useful.

In the process of  gathering my articles, I realized several things. First. I was diagnosed with rheumatoid arthritis ten years ago. My perceptive is very different now than it was ten years ago. At the time I was grateful to have a diagnosis. I was a critical care nurse and my mind looked for solutions to problems. There was a plan of treatment for RA. I would follow it and I would be okay.

My rheumatoid arthritis history was peppered with three different cancers with three different treatment plans. So on hindsight my rheumatoid arthritis was far more complex than some might have. My rheumatoid arthritis refuses to come under the  control of the wonder drugs to this day. The complicated nature of my RA in addition to the cancers makes for a challenging ten years. I cannot deny it.

The truth is that rheumatoid arthritis is progressive and there is no cure for it. Equally true is that the progress can be slowed with early and aggressive treatment. The important truth is the need for those with rheumatoid arthritis to be diagnosed as early as possible and to be treated aggressively as early as possible. I do believe that this is the current policy of the ACR in theory. In practice it takes  a new patient up to six months to be seen  a rheumatologist.

My rheumatologist regrets not starting me on the biologics earlier. At the time the TNF inhibitors were not recommended for those with a history of cancer. As my RA worsened it was agreed that I could safely try Rituxan. It didn’t work.

At the time I was on injectable methotrexate so I had some relief but then  I developed the methotrexate complication, black box number thirteen, soft tissue necrosis (radiated breast tissue). It set me back ten months and I could no longer take methotrexate.

Orencia helped. I took it two different times. Then It stopped. Actemra is the last drug available for me. It helps but its help is starting to decline. I have been told there is no other treatment for me. I am being sent  to the pain clinic. I am beginning to think I better go.

Vanilla Cake

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One of my favorite destinations online is King Arthur Baking Company.  It is owned by its employees as is many other grain companies. I found it during the pandemic when there was a huge shortage of rye flour, my favorite. I have been using their products ever since.

My Albuquerque son bought me the free shipping pass and my Texas son buys gift certificates for me. My favorites. This month their fruit fillings were on sale. So I decided to buy the apple and the blueberry. I would like to experiment with tarts and maybe make crepes. King Arthur has a huge library of recipes. All guaranteed to produce classic favorites.

The following vanilla cake is a good recipe for a woman with RA. Or a man with RA. It is amazing that something so simple could taste so good. There are no eggs or dairy. It requires no beating or no chopping of ingredients.

Preheat oven to 350⁰. Butter and flour an 8 inch square cake pain. I use unsalted butter. Sift the dry ingredients together. I always weigh the dry ingredients. I have my $10 scale from Bed and Bath that is very nice. Set aside. Diamond Crystal is the best salt for baking. If using Morton’s use only ½ tsp.

Mix the wet ingredients together with the sugar. Combine the two.  Beating is not necessary as it is with most cakes. Just mix it together quickly and gently. Pour into prepared pan and immediately put into the oven. Bake 30-35 minutes.

Sift together dry ingredients:

240g (2 cups) all-purpose flour

¾ tsp Diamond Crystal Salt

1 1/2 tsp baking powder

½ tsp baking soda

Blend together and add to dry ingredients:

1 cup plus 2 Tbsp (198g) water.

½ cup (99g) vegetable oil

¾ (144g) sugar

11/2 Tbsp vinegar. I used cider vinegar.

½ Almond extract

1 Tbsp Vanilla extract

Bake

A light, tender cake. Great with with fresh fruit. I also frost is with a

Ganache* frosting.

Melt 255g (11/2 cups) semi-sweet chocolate bits.  

In ½ cup half and half. Blend. Adding a little cinnamon is always good. Spread on cake. Quick and excellent.

*Ganache is simply melted semisweet chocolate blended with cream or half and half. I used to use a bowl over a simmering pot of water for my bain marie. I found a cute double boiler insert. I found a great one on Amazon for $10.

Flare

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After ten years with RA, I still have one big fear. It is the fear of having a flare that does not end. Another flare like the one  I am starting to have. It is the fear of one long, endless flare. Sleepless aches, simmering pain. Growing into a crescendo of misery. Pain and exhaustion.

Uncertainty lingers in the air. It is hard to make plans. Flares strike without warning. I have never had a premonition of a new flare. I am suddenly in the middle of one. Unpredictable.

Flares seep into the nooks and crannies of my body. It feels like my whole body hurts. Every corner aches and the aches become sharp pain with movement.

Walking through the vast VA today, my arms and shoulders ached so much I wasn’t sure I would get there or that my son would fine me after he parked the car. Is a wheelchair next?

I have been lucky. Sometimes more than others. Actemra and my various creams have held my symptoms in check up until now. But as this flare gains momentum, I wonder if my luck is gone and Actemra is no longer the guardian at the gate.  

RA patients are inclined  to be depressed. Is that what I am trying to be? It is easy to see why. I live in pain every day. The degree is the only variable. At my January visit, Dr  R, my rheumatologist,  was crystal clear. Actemra is my last biologic. There is nothing else left. I have tried them all. The decision has been made not to use the JAK inhibitors. Too much of a cancer risk given my history.

This edict bothers me more than any of my cancer diagnoses did. I felt that my cancer could be treated, I was fortunate with that. My RA is out of treatment options once Actemra is done.

Dr R keeps me on low dose Medrol. She wants me to go to the pain clinic, PT, Dermatology. Anyone who will take me. Reminds me of the House of God.  Trying to keep my mind off the inevitable. It feels like being terminal. And after three cancers, I don’t take that lightly.

I thought about deleting this post, but the truth is RA can be a very discouraging disease. Pain, of course, is the big one. At the same time, the feeling of being sick, listless, is hard to manage. The threat of disability hangs in the air.

I am an optimistic person. My recovery time after a flare is short. I have had a lot of practice. So I know I will have better times. Maybe. I am not really sure.

Positive and Negative

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I sometimes believe RA patients are divided into two camps. There are those with seropositive disease and there are those with seronegative disease. Those with seropositive disease are treated earlier in their disease. So early that initially hydroxychloroquine might be enough to calm their disease.

In order to be diagnosed with RA, seronegative patients must have more severe disease. Once they are finally diagnosed, they are usually started on methotrexate. An effective, but stronger drug.

My disease started in my feet and was symmetrical. My internist told me my feet were fine. Pulses good. He advised me to put my feet up more. RA in the feet wasn’t really acknowledged at the time. Ten years ago. It was assumed that RA started in the hands. Far easier to examine. Now RA in the feet is commonly seen in most people with RA. It was always there.

About a year later, I developed severe symptoms. In addition to my feet, the joints of my hands, shoulders, elbows, wrists and ankles were inflamed and I was in severe pain. At this point my disease was severe and I was easily diagnosed with seronegative RA. I was started on methotrexate, prednisone as a bridge and meloxicam, an anti-inflammatory drug.

Once the diagnosis is established, the disease runs a similar course and treatment is the same. My disease remained difficult to treat. It was complicated by several cancers and their treatments.

My rheumatologist initially avoided the biologics as they may contribute to the diagnosis of cancer. She eventually prescribed biologic medication. She had tried the four common non-biologics. Methotrexate was the only one that worked but it did not work more than fifty percent. As I said my disease was difficult to treat.

Orencia did work for a year at a time. Presently, I have been on Actemra for ten months. No methotrexate. Low dose Medrol. I’m back on Meloxicam. I use Diclofenac cream as well as Hemp cream. And Lidocaine for my feet at night.  

After ten years, my hands are deformed but useable. My feet are numb, so I no longer drive. I am lucky that Actemra works. Without it my options are few and I would be destined to live with endless severe flares.

If you expect to have a diagnosis of RA, do everything in your power to see a rheumatologist as soon as possible. Wait time is up to six months. I talked to a woman who was given an appointment six months out, but she called and called and was finally given a cancellation appointment. She is now on methotrexate and having the side effects, but they will pass, and her disease is being managed.  

Bob, Actemra, and Hemp Cream

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Bob, my sourdough starter, was well established and living in the refrigerator between feeding and baking. I took him out  to check on him and feed him. He was bubbling along happily. I fed him and put him in the oven on the proofing setting. Then I went off to an appointment.

When I came home, I felt restless. I decided to peel apples and make apple crisp. After peeling and slicing my apples, I turned on the oven to 350⁰. I finished putting together the apple crisp with those delightful spices of cinnamon, nutmeg and ginger. I opened the oven and there stood Bob. My precious starter that took me endless time and flour to make. He was hot and baked and not salvageable. I was sad. He had been a happy, successful starter that had made my English muffins. Tough.

I will reinvent Bob. Fortunately, he has nine lives. I will wait until next week. It takes  seven days to establish a new starter. Maybe I will create a backup and feed them different days. We will see.

I injected my Actemra. It comes in a pen. The needle is not visible. I don’t feel it when I inject it. I have no issue with giving myself an injection. At one time I used to draw up and inject methotrexate. Easy. But this pen would be good for those who are squeamish about needles. The engineering amazes me.

My RA is a problem at night. Shoulders, hands and feet mostly. My son bought me a jar of Hemp Cream for Christmas. It helps my shoulders. Dr R sent Lidocaine/Prilocaine cream for my feet. Both help. The creams give me something I can physically do for my joints. That in itself helps.

A Thera bath and my Hands

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A New Mexico blue sky. January temperature  30⁰. Enough water. Probably.  Our state has always taken water conservation seriously. Las Vegas should be as lucky. My potted parsley near the patio door is still thriving. Drooping but thriving.  And life goes on.

Actemra continues to help my rheumatoid arthritis at 50 percent. Last week I found an old bottle of Meloxicam, a NSAID, like ibuprofen. I restarted it. I doubt Dr R would mind.  It has boosted my relief to seventy-five percent. Very good. Dr. R had stopped it because it can elevate blood pressure and at the time my blood pressure was elevated. It is well controlled now.

The VA sent me a Thera bath paraffin wax kit. Tank for heating the paraffin, twelve pounds of paraffin, mitts and plastic sleeves. I set it up last night. It should be ready to use.  I had used one previously at physical therapy for my hands. It was wonderful. Now I have my own. Lucky me.

Bob, my sourdough starter, is in the refrigerator. It is almost time for his once a week feeding. My sourdough English muffins are good. I cooked them on the griddle on my new stove. Much easier than getting out my old portable griddle. It was heavy to move.

Today I will make buns so we can have bratwurst for dinner. These bratwurst will never be as good as the ones from a German street vender. But they are not bad. I make the dough for these buns in my bread machine. I shape them and after they have risen, I will bake them. Easy process.

My RA hands are getting worst. The joints lock in a set position more often.  My hands miss their mark and tip over anything in their way. Annoying. I am just glad my pointers work. I went through a time where my left hand did not work at all. So, I had only my right pointer to type. Took a while. I have both pointers now. Much better. Small victories.

Ten years with RA

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Ten years ago this month I was diagnosed with rheumatoid arthritis. My rheumatologist, Dr Reiter, and I traveled the complicated road through a complicated disease together. She was a new rheumatologist and I was a new patient.

Over the years she saved my life three times by discovering three different cancers. The last cancer would have been fatal had it not been caught so early.

My RA history has been peppered with cancer treatments and complications from those treatments. My RA has been every bit as progressive as the manual says it is. According to Dr. Reiter, my RA is  her worst case. I would guess that would put me in the top ten percent of RA difficulty.

At my appointment this week she told me Actemra was our last drug. The newer drugs cause cancer and given my history are not advisable. We agreed that the Actemra was helping. I would say about fifty percent. She put in a referral to the pain clinic. She wants me to go to PT for my shoulders to prevent frozen shoulder.  

She introduced me to her new nurse who has the holistic approach. She asked me about massage. I had used massage, but with my flares I would not want anyone touching my body especially for a massage. Not presently anyway. They were going to schedule my next appointment for an hour. My thirty-minute appointments frequently stretch into an hour anyway.  

On a cheerier note, Bob, my sourdough starter, is established. The King Arthur baking staff suggest treating your starter as a family member. I think Bob is my healthiest starter yet. I will be making my English muffins soon.

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Restarting the starter

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Today is day four. I am remaking my sourdough starter. When I had my leg injury, I stopped caring for my starter and it died.  A few months ago I thought I would take a shortcut and buy King Arthur’s starter. Unfortunately, I forgot that this starter was alive and needed to be fed withing a week.  When I opened the jar, I found the starter was beyond hope. Silly me. I decided to remake my starter  the old fashion way.

It is an easy process.  There is yeast in the air and in larger quantity in whole grain rye flour. Using my $10 scale, I measured 113g rye flour and 113g water. Mixed it carefully. I keep the starter in the oven. My new oven has a bread proofing setting at 95⁰. It is like an incubator.

By day two I was starting to have a few bubbles. On day three I had good activity. Now I am feeding the starter twice a day. My routine is to discard 113g starter and add 113g all purpose flour plus 113g water. This process goes on for about a total of five days. After that I will store the starter in the refrigerator and feed it once a week.

My starter’s name is Bob. He is alive and needs to be fed and given care. One of my favorite recipes is for my sourdough English Muffins. They are easy to make and much better than store bought.

I can judge my wellness by my baking. If I am having a bad time with increased flare activity, I bake very little. As I feel better I do more, it is a good sign.

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Osteoarthritis and synovial Tissue

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Finally, change is coming to the medical community’s view of osteoarthritis(OA). Although maybe slowly. For years it was considered to be a wear and tear disease that had no treatment. Ibuprofen and other NSAIDs were the only remedy. Eventually, when the joint deteriorated extensively, a replacement would be considered.

Research had been done on the use of biologics with OA without success. So, there has been no treatment other than palliative  because there was none known.

Although it has been understood for years that synovial inflammation is a feature of OA, more compelling research has been done in this last decade. Research has been done using improved MRI and ultrasound technologies. The researchers learned that the swelling and inflammation of synovitis contributed to the destruction of the joint. And to avoid or reduce this destruction, new therapies need to be found.

The synovial membrane is the tissue that lines all moveable joints, bursa, and most tendons. It  is this very tissue that is affected by rheumatoid arthritis(RA). Our immune system sees synovial tissue as foreign and  targets it for destruction.

It is nice to see progress on osteoarthritis research. Most of us with RA have some OA too.

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