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Phil Bousley

My Myositis Story
Phil Bousley

I had been in pretty good health until around 60 years of age.  In 2000 I began having trouble swallowing.  It was intermittent and very frustrating.  My family practice doctor sent me to have a barium swallowing test.  The radiologist asked me why I was having the test done.  Seemed like a stupid question; but I told him, “I’m having difficulty swallowing.”  He didn’t seem too interested in me or the test.  After the test he said, “I can’t find anything wrong with your swallowing.  I think it is all in your head.”  This was not a very professional thing to say to a patient.
Then my doctor sent me to a gastroenterologist to have a tube put down my throat to see if he could find any abnormalities.  He was nicer but said he could find nothing wrong.  So I continued to have problems with swallowing.  I learned that if I held my chin down when swallowing, it was better.
I also noticed that I was having pain in my thighs and it was difficult to climb stairs and get up from the floor without holding on to something.  I thought it was part of getting old.
In 2003 I developed severe headaches with pain so bad it caused projectile vomiting.  Even the pain medicine came back up.  After 3 days of this, I woke up one morning with double vision and a droopy eye.  My father died of a stroke and I assumed this was also the result of a stroke.  The emergency room doctor ordered a cat scan of the head.  He returned and said, “Phil, I don’t know any way to say this but you have a huge macroadenoma of the pituitary.  I’ve called your family doctor and he is on his way in.  My doctor came in and looked at me, turned and walked over to my wife, gave her a hug, and said, “I’m so sorry.”  I realized this was not good.  They sent me by ambulance to the medical center in Indianapolis to the neurology intensive care unit at St. Vincent’s Hospital.    The doctors told my wife that I could die if the tumor had a bleed.  I knew nothing of this.  They put me on massive doses of steroids for 3 days to get the swelling down before they did the surgery.  The surgery was rough; but I did fine.  At that time the doctors looked at my medicines and noticed that I was on Crestor, the statin drug for cholesterol.  They told me to discontinue the drug.  I did.
After sending me home from the hospital they put me on 100mg of prednisone for 2 –3 weeks and then reduced it to 50mg for an additional 3 weeks.  I actually felt better than I had before the surgery.  I told my wife it was easier to climb the stairs into the house from the den.
I was going to an endocrinologist because all of my hormones were messed up due to the tumor on the pituitary.  The endocrinologist told me to start taking the Crestor again since my cholesterol was elevated.  I told him the doctors at the medical center said to discontinue it and he said that dosage wouldn’t hurt me.
My muscle pain increased again.
To back track, I had coronary bypass surgery in 1999 at the age of 59.  The surgery went well.  My cardiologist was not pleased with my cholesterol and put me on Lipitor, a statin drug.  I took it for about a year and developed a lot of muscle pain in my legs, back and shoulders.  My CK enzyme was also elevated.  My Lipitor was stopped and I was put on Zocor.  The same thing happened.  Again the drug was continued after my CK level elevated and my pain returned.
I was placed on Baycol for a short time and again it was necessary to stop.  I was tried on some non-statin drugs with little success.
I don’t remember which statin drug I was taking at the time, but my CK level was checked annually.  On one of these checkups, my CK level was elevated and so was the CKMB.  The CKMB portion of CK is supposedly specific for heart damage.  I was placed in coronary care overnight.  My troponin was negative indicating that I did not have a heart attack.
The last statin drug I took was Crestor.  Again the pain came back worse than ever before.  By this time I was having difficulty swallowing, difficulty getting out of chairs and car, falling frequently, difficulty climbing stairs, and difficulty getting out of bed and up from a sitting position on the floor.
I was a clinical microbiologist at the local community hospital for 40 years.  All this happened while I was employed at the hospital.  One day my family physician saw me walking in the hall and I had what appeared to be foot drop.  I was walking along the wall and holding on to the rail.  He asked what was wrong with me.  I told him about my pain, symptoms, and elevated CK level.  By this time my CK was 1000.  He told me to get an aldolase blood test and if it were positive, I could have polymyositis.  The aldolase was elevated and he sent me to a rheumatologist in Indianapolis.
The rheumatologist ordered a batter of blood tests which included several antibody tests.  The tests all came back negative.  The rheumatologist said that since the antibody tests were negative and my CK level was “only 1000” he didn’t think it was polymyositis.  But he decided to do a muscle biopsy to be sure.
The muscle biopsy was done on my left thigh.  About 10 days later I received a call from the rheumatologist’s nurse.  She said, “Your muscle biopsy came back and you have polymyositis.  The doctor wants you to take 40mg of prednisone daily.  Where do you want the prescription called?”  I told her of my pharmacy and asked when I could see the doctor.  She said for me to wait.  Finally she came back on the phone and said he could see me in a few weeks.  When I did get to see him he showed me the report.  The diagnosis was “Polymyositis-severe”.  The rheumatologist said that the statin drugs were the trigger for my polymyositis.  The drugs didn’t cause the disease; but brought it to the surface.  I am not convinced that the drugs didn’t CAUSE my PM.
Foolishly I was happy.  I thought I could take some pills and cure this thing.  Wrong!  The rheumy said he would have me in remission in two years.  It has been four years and I am not in or close to remission.  But I have good days and hopes of making it to remission.
I have had flares and find that polymyositis is a rollercoaster.  I have reduced the prednisone down to 2mg/day.  My r’heumy put me on Imuran with increasing doses until I was taking 175mg/cay.  Then he added methotrexate.  Currently I am on 2mg prednisone, 50mg of Imuran, and 7.5mg of methotrexate.  I am doing better and still have dreams of total remission.  Yes I do still believe in Santa Clause and miracles.
I need a knee replacement but my orthopedic surgeon said he wouldn’t operate on me while on the higher doses of Imuran, methotrexate and prednisone.  Now that the doses are lower, it might be possible to have the surgery.  My rheumy said I could stop the drugs a week before the surgery.  He didn’t say how long I would have to wait to start them again.  The thought of having a flare while recuperating from a total knee replacement puts a little fear in me.  So I’m going to put it off as long as possible.
My tumor is back and affecting the pituitary; but not bad.  The neurosurgeon said I could have the regrowing tumor removed surgically, have radiation therapy on the tumor, or have annual MRI’s and visual field checks to see if the tumor is affecting the optic nerve again.  I chose the last option.
My friends on the support group websites have been a blessing to me.  I have learned more from them than from the doctors or publications.
Submitted by: Phil Bousley 23-10-09

 

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