Latest Posts

Methylprednisolone and RA

Published by

RA Just sayin

Methylprednisolone (WOW, an impressive word!) is served up in a package of 21 four milligram (mg) pills (Medrol Dose Pak) with specific instructions as to when to take each pill. One time a nurse told me to start the pack the next day as the instructions start before breakfast and that would be the only way I could follow the instructions. I would have to wait through the night before I could start resolving my problem.

This time around I saw written on the package that all six tablets in the first row for the first day should be taken on the day you receive your prescription even though you may not receive it until late in the day. All 6 pills may be taken at once on the first day or divided into doses for the remainder of the day.

I have had this prescription twice for inflamed salivary glands after thyroid cancer treatment and twice for RA flares. I call it a miracle drug as it is so effective. My joints still hurt when I get out of bed in the morning, but I feel a lot better. Joint swelling is minimal. Pain is minimal. I have renewed energy. I feel human again.

I normally take 5 mg prednisone daily. So I was wondering what the equivalent strength of methylprednisolone was to regular prednisone.

5 mg prednisone is equal to 4 mg methylprednisolone.

There are equivalent calculators on the internet. Google it. So on the first day of my Medrol Dose Pak I was taking 30 mg of prednisone. Not so bad. The last day I am back to my normal of 5 mg.

My doctor says I manage my RA well. I appreciate her feedback. It is a tough disease. It is long and persistent as are many others. It doesn’t happen suddenly. Then you are treated and then you are done with it. It is something that is lived with for the long haul with all its ups and downs. I appreciate having tools such as the Medrol Pak for times of need. The RA toolbox has many tools and the Medrol Pak is a good one to have in it.

RA and Malnutrition

Published by

rockrose

Rockrose

A COMMON BUT LITTLE KNOWN complication of RA is malnutrition.  In fact, it is estimated that more than 40% of Rheumatoid Arthritis patients are malnourished.

My first thought would be that RA can cause such overwhelming fatigue and pain that it would be difficult to muster the energy to prepare and then eat a meal. Just to make a sandwich requires unwrapping the bread, putting the slices on a plate, wrapping the bread bag back up, opening containers and adding spreads, meat or veggies, closing containers, putting them away. Sitting down at the table with your sandwich and eating it. Sounds easy enough. But if you are so wiped out by the extreme fatigue of RA or your hands are swollen and ache deeply in a way that is hard to explain, making a sandwich can be an overwhelming task. It is a task that can be skipped. And it frequently is. Additionally, it is difficult to rally the energy to go to the grocery store, get out of the car, walk in,  select items, pay for them, go back to the car, put the groceries in, get in yourself, drive home, carry the groceries inside, and put them away. Exhausting thought. Nap time.

Next on my personal list of why RA patients are malnourished are drugs. Many of the DMARDs (Disease Modifying Anti-Rheumatic Drugs) have side effects. Some of them go away once your body becomes accustomed to the drug, others don’t.  Nausea is a big one on my list. I am thinking of my friend, methotrexate. I do believe most of the DMARDs can cause nausea.   Nausea, alone, is enough to kill an appetite and it is no help for food shopping success.

Doctors add protein wasting to our list of why RA patients become malnourished.  The chronic inflammation that RA sufferers endure produces chemicals that interfere with metabolism and causes muscle wasting and then muscle weakness. Muscle strength weakens.   Loss of grip strength is an example. This wasting does not occur in the fatty tissue. The fat may stay as the muscles become flabby. Doesn’t seem fair. Those with muscle wasting may look plump enough but their muscles are deteriorating. Moving them in the direction of a downward spiral.

Understand that eating a balanced diet is as important as taking your drugs. Moving those muscles is important, too. The how-to is a little more challenging.

RA treatment drugs can cause nutrient deficiencies. Folic acid is a necessary  supplement when taking methotrexate. A B vitamin complex is helpful. Calcium and vitamin D are especially helpful for those on corticosteroids or not. RA patients are at increased risk for osteoporosis in any case. Antioxidants, such as vitamin C, are also important.

There is more but this is enough for now. Think fish oil. No, don’t think that. Think juicy, fresh strawberries, slices of Havarti, bread that is fresh and crusty. An afternoon nap. That’s where I am headed.

RA nodules

Published by

Rheumatoid nodules are commonly talked about when rheumatoid arthritis (RA) is discussed. It might surprise you to know that only 7% of those newly diagnosed with RA have rheumatoid nodules. So they are not characteristic symptoms of newly diagnosed RA.

Overtime, about 25% of those with positive Rheumatoid Factor (RF) develop nodules. Nodules are frequently present in the more severe cases of RA, those more likely to have rapid progression of joint destruction and to develop vasculitis.  75% of those with Felty’s syndrome, more common in white males, have rheumatoid nodules. Current smokers with RA plus nodules usually have more severe disease.

In those with seronegative rheumatoid arthritis, about 6% develop rheumatoid nodules.

The condition of having rheumatoid nodules is called rheumatoid nodulosis.

  • The nodules form below the skin near joints.
  • They are firm and frequently moveable.
  • They are not tender and are not usually harmful.
  • They are 2 mm (.008 inch) to 5 cm (2 inch) and may occur singly or in clusters.
  • They are formed in three, under the microscope, stages:
    • acute inflammation (not like the inflammation found in joints.)
    • granulomatous
    • necrotic where the central tissue in the nodule dies. There is risk of infection and ulceration.
  • Severity of the nodules is related to joint erosions and other severe features of RA. Genes play a role in the appearance of nodules.

Common sites for rheumatoid nodules are bony prominences

  • hands, elbows, forearm, fingers
  • hip prominences
  • joints of feet
  • back of head, heels, Achilles tendons, ears, penis, vulva

Those wheel chair bound or bed ridden may develop nodules over the low back and buttocks.

Rare sites

  • lining of the lungs, the lungs
  • lining of the heart
  • lining of the abdomen
  • bones
  • vocal cords
  • trachea
  • liver
  • pancreas
  • kidney
  • CNS
Mary Man's RA Journal Icon

Oral bacteria, rheumatoid arthritis and the TSA

Published by

There is a growing link between oral bacteria and rheumatoid arthritis. I keep this in mind as I pack my suitcase for my visit to my favorite people, my grandchildren, Madison and Nate. I packed my fancy toothbrush, my Tom’s toothpaste, floss and pics. I had a small container of Biotene mouth rinse. However, I only had a big jug of Crest Pro Health Multi-protection mouth rinse. I could not find a travel container among my travel gear. I improvised. I had a snap-it plastic container, guaranteed never to leak. Perfect, I thought. I am set to go.

Traveled. Arrived. Couldn’t find my mouth wash. Managed with what I had. Enjoyed a wonderful visit. Traveled home. As I was cleaning out my suitcase I noticed two pieces of paper. The first said my luggage had been chosen to be inspected. The second was as follows

I found out what happened to my mouthwash. The TSA has saved the country again by confiscating the very mouthwash that helps protect my mouth from disease and consequently worsening RA. I feel so safe. Not.

The TSA action does remind me of the story of the man who dropped his keys and only looked for them under the streetlight where he could see. I’m sure you have heard it. I wish the TSA would understand the moral of the story.

Oral Hygiene is very important to those with rheumatoid arthritis. There appears to be a link between oral health and autoimmune and inflammatory diseases. Is periodontal disease a trigger for rheumatoid arthritis? Is it a factor in worsening RA disease?  There is growing evidence that the answers are yes. Any inflammation in the body is tough on RA.

Excellent mouth care is a must for those with RA. Brushing, flossing and a good rinse should be routine. For those with dry mouth syndrome, Biotene oral rinse is a valuable help.

Rheumatoid arthritis makes it difficult to do the mouth care routine. Here are a few helpers.  An electric toothbrush.  Check to be sure the weight isn’t too much for you. Water pic might substitute for those who cannot floss. Mouthwash at night. Keep a comfortable stool in the bathroom. Sit on it while brushing and flossing. Take your time.

If fatigue is severe, shower. Rest for a while. Dress. Rest for a while. Dental care. Rest for a while. Make yourself as comfortable as possible. You can get all the things you need to do done. You may need to do them in segments. Whatever works.

Good home mouth care is half the equation. The other half is good checkups.  A visit to your dentist twice a year is mandatory. Your mouth will thank you. Your rheumatoid arthritis will also thank you.

 

 

A celebration of Recovery 10,000Waves

Published by

About as high as you can go up into the mountains in Santa Fe on the road to the Ski Basin is tucked a high-class Japanese Spa specializing in bodywork and skin care. Ten Thousand Waves.  My destination. Just what I need. I desperately need. My treatment choice is NOSE TO TOES. A Mother’s Day gift certificate from Chris and Katie.

I live in Albuquerque and this would be my first road trip in three years. I gassed my Tin Lizzy, my 5-year-old Mini Cooper Clubman. Pepper white. Turbo. Added bottled water, spa directions.  Put on my winter jacket. Ready to go. Finally!  This is November.

I headed toward I-25. Sunny day. Cool. I am on the road.  I am also on the recovering end of a devastating year. The year was 2013. Almost three years ago. I had been diagnosed with a severe rheumatoid arthritis followed by two different diagnoses of cancer. Surgery. Radiation for each. Pills forever. No relief for the RA until this year with the start of Orencia. It is a miracle drug. I am recovering from all. Made it. My trip to the Spa is a celebration of survival, determination, endurance. Both cancers in hiding. All the RA swelling and pain beating a retreat. Miracle for me.  I am a lucky girl.

I had felt a little nervous getting back on the road. Would my hands be okay? Would my car? But not to worry. I can feel my car smiling as it glides upward on the climb from 5000 ft. to 7100 ft. elevation. It loves it.

There is a point in the climb where the basin opens up on the road before me. My destination is now visible in the distance. The Sangre de Cristo mountains stand guard. Always a welcome sight on every trip to Santa Fe.

Winding through Santa Fe, Artist Road, Bishop’s Lodge Road, Hyde Park Road. Street names as colorful as the city is. Climbing higher and higher on winding roads to 7300 ft. elevation. Pinons. Juniper.  I finally see the sign. Park. I made it.

I climb the 92 steps to the Spa. Wood and green. I am fitter than I thought.  I make the climb without a heart attack or without simply looking the fool.

I arrive at the top to meet others waiting for the spa to open. My favorite was a woman much like me. She was wearing a man’s winter hat and a large sweater. She is traveling. In search of her future, she spent her nights at monasteries along the way. Bring your own soap was her suggestion for the monastery.

The doors open and we climb some more stairs to meet a counter populated by staff signing us in. In turn for a driver’s license, I was given a kimono and a brief tour.

With lemon water in hand, I head toward the women’s changing room. Locked up all my stuff. Showered with fragrant gel. Dried with luxurious towels. Experienced the bidet, which I hadn’t seen since Paris. Wrapped in my kimono with sandaled feet, I head out. Very nice.

Waterfall. Water. Wood. Greenery. Peaceful. Very helpful staff. A good place to be. I was sent to a little sauna to wait for my treatment. Warm. Relaxing. Classic. Soon I met Marcia. She brought cucumber water for me.

In a room of quiet elegance, tinkling music, soothing atmosphere, I lay face down on the treatment table. Fine adjustments made by Marcia, I am in perfect comfort. She explains the process as we proceed. My back side is lightly rubbed with luffa gloves to stimulate my lymph circulation.  Followed by a thorough, exquisite massage with delightfully warm oils. Shoulders and upper back deeply massaged. Flipped, my front received a similar treatment. Gentle Thai stretches added to the variety. An extended Yasuragi head, neck and shoulder treatment followed.  “Do you mind oil in your hair?”  “Of course not,” I replied with a smile. Warm camellia oil massaged into my scalp, my neck.   MY body relied, fabulous.

On to my feet. A Japanese Foot Massage similar to Ashi Anma using Japanese shiatsu techniques. An appreciated attention to my weary RA feet. Of course, I am laying there wrapped in total bliss. This is followed by a foot scrub followed by a warm towel cleanse. With a warm towel to my neck. Wow. My thanks to Marsha.

I go to another little sauna to re-center myself. I am a relaxed, rejuvenated woman.

Stopping for hot tea, I return to the women’s room. I dress. Sip tea. Prepare for the journey home.

I am deeply satisfied. I am not only happy for such an impeccable treatment experience, I am happy that I have gone on my first adventure since being sick. The realization is that I can do it. I stand a little taller. My triple illnesses seem to move a little more into the distant past. My life’s future once again beckons with promise.

Thank you Chris and Katie and Madison and Nate

 

 

Test Week

Published by

Since my Rheumatoid Arthritis and my two cancers were diagnosed in the same year, it is logical that  milestones occur the same way.  In one week I had  tests for my two cancers.

On Monday I had a Thyrogen shot in the butt. The medication  acts like TSH, a hormone  that  normally stimulates your thyroid. ( $1400 each without insurance, $135 each with). Tuesday I repeated Monday with another shot.

On Wednesday I went to nuclear med for a radioactive pill.  I am not radioactive. I feel like I am. I am also given two containers of MOM. The tech said it was a mild laxative. One tonight. One Thursday night. it wasn’t mild. I was also instructed to eat lightly.

On Thursday I went to Radiology Associates of NM for a diagnostic mammogram. I do love this place. Friendly people. Coffee. Special cute patient gowns.  I felt that I would be fine, but I had the vivid memories of when I was not. So I still worried. Lucky me!  There was no sign of cancer. A big relief.

Friday I had a body scan at 10 am.  Nothing to eat or drink for four hours.  The scan is done differently than other scanning devices. It is not a closed tube although the scanner is close to your body. There is not the claustrophobic feeling.

They also make changes with the equipment  by taking something off and adding something else. Finally done with this, I am sent to the lab for a critical thyroglobulin test. That done I have an ultrasound of my thyroid.

Finally, test week is done.

There is no thyroid cancer in my body. I am cancer free! It is an amazing feeling. A big relief. I feel like I can go on with my life. That I have a life.

Yes, I do have RA. From the initial thyroid radiation, I do have  salivary gland and dental complications.   I have a degenerating spine due in part to the medications I am on for the RA and the breast cancer. All these things can be managed. So all in all I do see myself as lucky.

During the last few years I have had the pleasure of meeting people who have a life long struggle with cancer. They have amazing perseverance through incredible difficulties. I am fortunate to end my journey with cancer for the time being.

 

Walking with Wisdom Woman

Published by

Walking with Wisdom Woman

RA Attitude

After an MRI of my lumbar spine. Seeing the bad news. Being sent to yet another specialist. Spine and Pain Clinic. I was totally discouraged. In the same small office complex, I visit my rheumatologist, my neurologist, my oncologist, my palliative care nurse and now a pain doc. And this is just one of the office buildings I visit.

I was discouraged because I could see it as another proof that my body was falling apart. Am I on a steep slippery slope looking downwards? Scary.

I was scared. Then, as if by magic, my Irish-French Canadian genes kick in.

What to do?

A long time ago I had come to the conclusion that I needed to keep my primary focus on the activities of my life.  My writing. My family. My friends. My Hobbit House Projects.

I would not ignore my medical issues. I would care for them well. And then I would bring my focus back to the activities of my life. Sometimes I could do more and sometimes less. It worked for a while.

The next step in managing my situation was to realize that in spite of not feeling well, I still needed to carry on. My new norm is disability and a worsening prognosis. So I decided it was time to learn to live with it, put it in its place and keep going.

I am in a physical therapy program for my spine and am going to warm water arthritis classes for my RA. I have even started the long requested CSN blog for the board.

People I know continue to carry on with their projects. Their brain cancer, stage 4 breast cancer, kidney cancer doesn’t stop them. I see pain in their eyes sometimes. They continue on. They are role models for me.  They motivate me to carry on with my projects and my life. If they can do it, so can I.

Ruth explains RESET

Published by

The delicacy of the mahogany writing desk. Petite. Leather inlay surface. Slender wood turned legs. Just right for Ruth.  She sat back straight in her neat smoothed dress. Her eyes twinkled in greeting.Ruth at her special desk

“I need help,” I said. She glanced toward the strait backed chair next to the desk. I sat. “I am discouraged. Exhausted. Defeated. Weak. Worried.  In pain. All of it in a jumbled pile in my mind. Too much.” She smiled her little smile as she looked into my eyes.

“It does sound like too much,” she agreed.  “It weighs like an anchor on your soul leaving you feeling stuck. You need relief.”  She understood as always.  “Maybe it is time to RESET yourself. You are overloaded with tough stuff.”

“Let’s have tea and sit in the big cozy chairs, “she suggested.

As we sipped our tea and munched on lemon cookies with buttercream frosting, she explained the process.

The first and most important RESET step is the Purge. The purpose is to empty the mind of all concern. Meditation can be too hard at this advanced stage. So let’s start with a commitment to a concentrated distraction. The distraction is a solo adventure. Let’s try for two days.

Immerse yourself completely. Two solid days working on your novel, next essay, researching, writing nothing else. It needs to be engaging. Actively grabbing your mind. Lemonade. Organic potato chips. Must be satisfying and must take you heart and soul to another place.

The most important part is to escape. To immerse yourself in the magic of concentrated effort, focus.

I can do this.

So I am doing this. I am enjoying my immersion. I love to write and I have my own permission to do just that. It is working. I am distracted.

“Work on this step and when and when you are ready, come back and we will work on the next step. You need to focus completely on this step” Ruth said with a smile of encouragement as I left the Bookstore.

I am so lucky that Ruth is my friend.

Ruth has RA, too

Published by

 

Ruth

Ruth has RA

I love Ruth. I smile when I see her and Ruth always smiles back at me.   Her blue eyes twinkle with a happy secret. I would like to know what Ruth knows.

She always looks the same. She wears a blue dress that looks just right. Her hair is neatly parted to the side. Her hands are folded on the front of her dress. Polite. Neat. Helpful.

Ruth works in a  bookstore that has many books both new and old. There is every book you could ever want to read in Ruth’s store. The bookstore also has excellent coffee.  There are  big cozy chairs for reading.  It is a good place to spend lots of time. Ruth works in the best bookstore.

I met Ruth at her bookstore. I was looking for a hard cover copy of Preston and Child’s Relic. Great book. It is everywhere, paperback, kindle, nook. The hard cover copy is not.  It is hard to find. I have read it but I wanted a hardcover for my library. Of course, I knew she would.  Ruth found a copy for me. It was like new and fairly priced. Thank you, Ruth.

Ruth talks about her RA once in a while. We are usually sitting in cozy chairs and sipping coffee. Ruth knows I have RA too.  “My hardest part can be the malaise that  descends like a blanket of very thick molasses. It is as bad as the pain,” she said.  “I feel the same”, I replied. She  tucked her legs up under her blue dress, re-positioned herself and   reached for her china blue coffee cup.  She looked comfortable. I felt comfortable too. Our RA was taking a nap, maybe. We talked for a good while thinking that life was good.

RA Tool Hand Exercises

Published by

Another asset in our RA tool box is hand exercises.

We need to maintain our flexibility and our strength.

Deciding that I needed to be able to do more for myself, I asked my Doc to send me to the Albuquerque Health Plex Physical Therapy Hand Clinic.

Wow!  is all I can say.
  • My hands were thrilled with the weekly professional paraffin wax treatment.
  • I learned a set of exercises that will help me maintain my hand function. I do them daily. They can be done anywhere.  Below are instructions for a few.
  • I was fitted for hand orthotics custom made for me. I have them for night use when I am in a flare. My hands are protected while I sleep.
  • I asked and I received. I am also fortunate to have a physical therapy department that is expert in the treatment of Rheumatoid Arthritis.

Range of motion exercise for drifting

Finger Walking

Place fingers and wrist on the table palm down. Hold thumb in hitchhiking position. Walk each finger one at a time toward thumb. Return to original position and repeat 5-10 times daily.

 

Finger ExtensionFinger Extension

Place palm flat, raise all fingers, then raise each finger one at a time toward the ceiling. Repeat 5-10 times daily.

 

Finger flexion

Finger Flexion 1

Rest hand on little finger side to align fingers. Bend fingers and touch heel of hand.  Repeat 5-10 times daily.

 

Finger flexion 2

Finger flexion 2

Start with fingers straight, bend fingers without bending knuckles. Repeat 5-10 times daily.

Thumb Prehension

Thumb prehension

Touch thumb to each finger tip making an “O”.  Remember to straighten thumb back to hitchhiker position each time.

Do these easy exercises daily. Your hands will love you. You will also feel the accomplishment of helping yourself move into a better place.