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Managing RA and commitments

I made a big accomplishment recently that makes me very happy.  I  completed my role as planning committee member for Cancer Support Now’s 4th Annual  Long-Term Effects of Cancer Survivorship Conference.  The event was successful. I could see it being valuable to attendees just like it was for me  last year.  I had loved it. Felt grateful for it. I had wanted to be involved in it.

Being involved had meant crossing town at 5 pm for planning meetings.  Crossing town just at the time when  the pain and the fatigue of RA  increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together.

The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences.   The pain kept getting worse with passing hours. Pain medicine hardly made it bearable. I thought how in the world will I make it through the week. Saturday’s Conference would be would be 9 hours.

Tuesday I had the good fortune of seeing Abby, palliative care at Presbyterian. We had the discussion about treatment for RA being really just symptom relief and perhaps slowing the progression a little. The big symptom is pain and we agreed it had to be managed. I needed to put my pain medicine on a schedule. I did. She also put me on Gabapentin for neuropathy, an RA bonus. Both were scheduled together.

Wednesday I made the 5 pm trip across town to help assemble registration packets. Friday I made another trip across town to help set up. I was doing better.

Saturday I was fine. Spent the day at the conference. It was a successful day. I felt grateful to be able to contribute.

cancer support now logo

RA and cancer support

cancer support now logo

Click image to visit CSN website.

Cancer and RA seem to go hand in hand. Shortly after I was diagnosed with RA,  I was diagnosed with two different cancers, thyroid cancer and then breast cancer.  I had the big C hanging over me like a grey cloud, leading me down the cancer road with all the usual experiences.  After surgeries and after radiation treatments, I started looking for help, for support.

I found it with the Cancer Support Now Third Annual Long Term Effects of Cancer Survivorship Conference.  A long name worth repeating as I became totally impressed with this organization. Dava Gerard, MD, a respected physician in the cancer field, gave the talk ¨The Journey: From Surviving to Thriving¨.  It was just what I needed.  Arti Prasad, MD presented ¨Holistic Cancer Survivorship¨.  Again excellent. There were breakout sessions. Free lunch from Jason’s Deli. The morning had started with a generous breakfast. I felt welcomed and very glad to be there.

Since then, I have joined the board of Cancer Support Now and am on the committee for this year’s conference. Both are big commitments as my RA is  unpredictable and continues to worsen. I have been able to keep up. I contribute. My fellow members are generous, thoughtful people.  My commitment made me dress and go out the door when I might have stayed in bed  in pain. I am the richer for it.

 This year’s conference,  The Fourth Annual Long-Term Effects of Cancer Survivorship Conference is March 28 at the Central United Methodist Church, 201 University.  8:30-4:30.  Dr. Michael N Linver will speak on ‘Life After Breast Cancer’.  There will be a Panel on post-treatment rehabilitation. Break out groups. Breakfast. Lunch. Chair massage.  Conference is sponsored by New Mexico Department of Health. It is totally free. Also Free parking.  More about the conference on www.cancersupportnow.org; For registration call Patricia Torn at 505-307-3414. Please come. Last year it helped change my life. Maybe it is your turn this year.

 

Garrett

Garrett is amazing.  He is tall and lanky. Arty. Welcoming. He is a student at the ABQ School of Massage and he gave me a massage at their free cancer clinic. I remember my first experience. Coming out of the massage room, I felt renewed.

Massage therapy started as a new adventure for me.  My RA needed help.  So did I.    Massage therapy seemed like a good thing to try. I made the appointment.

After the first massage,  I received an email from Garrett asking if I would be the subject of his case study on Rheumatoid Arthritis. I would receive six free massages. He would ask me questions about my RA.  Of course, I said yes.  I needed another tool in my RA toolbox. I am a lucky woman.  My adventure continues.

Today was my 5th massage. I follow the routine of each massage. I check off my choices on Garrett’s  before pain scale sheet. Next I undress in the massage room and slide under the sheet and blanket.  Lights are low.  A quiet space.  I lay on my belly which is surprisingly comfortable.

Garrett places warm packs on my hands and on my supported feet. My body loves the heat. He measures my arms for his notes. He massages my back, legs.

He removes the  warm packs. He massages each finger, each hand, each wrist, each arm. Next he massages each toe, each foot, each ankle, each leg. I flip over and he reapplies the warm packs. He works my neck and also my jaw which has RA and feels greatly improved after Garrett’s work.

Each nook and cranny of my body feels alive and appreciated. I dress. He has a cup of water and the after pain scale sheet waiting.

Thank you, Garrett.  Now I understand the value of massage in the management of RA.

Massage  stimulates my  circulation, my lymphatic system. It feels indulgent. It is incredibly relaxing. It reminds my body that it can feel good.  It is the favorite tool in my RA toolbox.

Rituxan- the final frontier

RituximabRituxan, the final frontier

February marked the second anniversary of my Rheumatoid Arthritis diagnosis. After two years of treatment, my average pain level was reduced from 10+ to an average range of 4 to 7 every single day.  The constant presence of pain and a body riddled with inflammation continue to suck every drop of energy from my aging, aching body.

My treatment was complicated by the addition of thyroid cancer and soon after that with the addition of  breast cancer. Both required surgery. Both required radiation treatment. Both required medication.  Both interfered with my RA treatment.

  • The TNF antagonists, like Embril, are contraindicated for those who have recently had cancer. I am not allowed to have them.
  • The ongoing treatment for thyroid cancer is to keep my body slightly hypothyroid. It helps prevent the cancer from recurring but it also increases the effects of RA fatigue.
  • The ongoing treatment for breast cancer is anastrosole. It eliminates all estrogen in the body. It also puts me at high risk for osteoporosis as does Rheumatoid Arthritis.

My treatment originally started with methotrexate which did take the edge off, but not enough. Plaquenil, an anti-malarial drug was added next. It became a triple therapy with the addition of sulfasalazine, an old drug designed for rheumatoid arthritis. I am also on meloxicam, one of the safest NSAID’s and low dose prednisone. I have Tramadol and Norco in my arsenal and well as a Medrol pill pack.

I could not tolerate the sulfasalazine, which left me nauseous, queasy, feeling generally rotten.  I stopped taking it. Next I was started on Leflunomide, a backup drug for rheumatoid arthritis when other drugs are not working. Additionally, I started injecting my methotrexate.  It is easy and safe to do. Still this was not enough.

The consistently elevated inflammation markers in my blood, the constant swelling in my joints, my  level of pain and  x-rays of my feet that reveal damage collectively paint a picture of RA still out of control.  My rheumatologist, my endocrinologist, my oncologist and my internist all agree that Rituxan is next.

It is a drug used for rheumatoid arthritis when all the other drugs have failed. It is only approved by insurance companies when TNF inhibitors have been tried and failed. My doctor sought out and got a special exemption from my insurance company for me since the TNF inhibitors were contraindicated in my situation.

Rituxan is the only drug of its class approved for use with RA in the USA.  The drug kills B cells which are produced in excess in RA.  It is given in two infusions 15 days apart. Six weeks pass before it takes effect.

Wish me luck!  Beyond Rituxan, Orencia might be possible. Otherwise, the magic of the medical world is done. The creeping progression of RA continues.

 

 

 

 

Keeping RA Feet happy

My RA feet are much happier today.  They had not been happy for several years.  RA had started in my feet and included my ankles.  Pain and unstable gait were serious problems.

I was sent to a podiatrist. He ordered weight bearing x-rays of my feet which showed deteriorating joints.

He sent me for the following inserts that are available at New Balance stores. About $50 a pair.

ProThotics, Motion Control performance insoles

  • Support and stability for overall foot health and comfort
  • Anti-friction fabric, breathable, anti-microbial
  • Vy-Gel shock absorption across the forefoot and heel strike to protect against fasciitis
  • Strong arch and metatarsal features help to relieve pain and guard against harmful over- pronation
  • Structural stabilizer promotes maximum stability and helps correct postural alignment
  • Polyurethane base layer provides cushioning that will never flatten out over time
  • Bio-mechanical design helps prevent pronation and rolling ankles on uneven terrain.

They live up to their promise. I have two pairs. Yes, they are expensive but have made an incredible difference for me.

My podiatrist also sent me for new shoes.  I was fitted for excellent shoes I am an E width.  I had been wearing a B.  The importance of being fitted for shoes by an expert can never be underestimated. I had thought I was buying decent shoes. Wrong! I bought two pairs: one called a nurses shoe(black) and one an excellent walking sports shoe.  The New Balance store has an excellent reputation. Another recommendation was REI.

Between the inserts plus the well fitted, supported shoes, my feet are much happier for getting around. This help was non-invasive. It didn’t include more medication. It was expensive. But it made the world of difference for me.