TMA, The Myositis Association
Submitted by: Fay 12-10-09
- There is pain with myositis.
- All patients are different and can have different symptoms with the same disease.
- Typical physical weakness results in a) difficulty swallowing, b) trouble getting up from chairs, c) falling, d) climbing stairs, and e) getting out of bed.
- Dermatomyositis patients have skin involvement and sensitivity to the sun.
- Patients perspire when others around them do not.
- Many myositis patients suffer from extreme fatigue. This occurs even without any exertion.
- There are many different degrees of illness with myositis from mild to extremely severe.
- Some patients experience changes in their voices.
- Myositis patients might have a negative muscle biopsy, even when two are taken at the same time in different sites.
- The CK level is not always positive in myositis patients.
- Never accuse a patient of being a hypochondriac just because you can’t find a diagnosis.
- Older patients can have myositis and all aches, pains, and bouts of clumsiness are not caused by getting old.
- The aldolase might be a better indicator of inflammation than the CK level.
- Myositis patients with elevated CK levels probably will have elevated CKMB levels also. This does not always mean cardiac involvement. Order additional testing such as a troponin to be sure.
- Myositis patients frequently have other autoimmune diseases. Their varying symptoms are real.
- Patient may have strength; but no endurance, e.g. may be able to lift heavy objects but can only hold it for a few seconds.
- Mysositis is a systemic disease, which, in addition to its effects on muscle and skin, often affects other areas of the body such as the gastrointestinal, pulmonary, and cardiac systems.
- Patients react differently to medicines used in treating myositis. The same medicine might put one patient into remission and send another patient to intensive care.
- Tapering of prednisone needs to be keyed to the individual patient.
- Myositis patients look normal; but still can be very ill.
- Pain and flares are not always directly correlated with the CK level.
- Myositis is a chronic disease. You might get the patient into remission; but you are not going to cure them. While not curable, myositis is very treatable.
- Treatment should be based on how the patient feels, not solely on blood test results.
- It sometimes takes a long time to get the right combination and dosage of medicine to be effective.
- LIVING WITH MYOSITIS:
- Myositis sufferers frequently cannot return to work and are truly disabled.
- Myositis affects the entire family unit. Prepare the patient for this.
- Include the spouse when possible in treatment plans, etc.
- Myositis patients need a handicap parking sticker.
- Myositis is a lonely disease and patients need a support group. These are usually on the internet because the disease is rare and there may not be other myositis patients in the same area.
- Myositis patients are frequently frustrated and perhaps clinically depressed.
- Myositis patients are extremely friendly, helpful, understanding, and loving to others who share their diseases.
- Family and friends will not understand why you are unable to participate in family event due to pain and weakness.
- Life with myositis will necessitate changes is lifestyle. Myositis patients may never mountains climb again.
- Memory loss. There is a failure to remember words or events.
- Lack of concentration. Sometimes difficulty reading and keeping a train of thought
- Treat the patient, not the disease.
- Life threatening complications can kill. Annoying symptoms can hurt. Myositis patients suffer from both. Doctors should treat all.
- Be open to all options of treatment. It does matter that you care and search for an answer.
- The physician should be up to date on all medicines being prescribed.
Listen to patients when they feel they are having adverse reactions to medications.
- Give the patient some indication that you give a DAMN.
Submitted by: Phil Bousley 14-10-09
- I am a 31-year old woman who lives in a great town, has a fun job, the coolest friends imaginable, and has a generally smashing time in life. Until the beginning of 2009, I enjoyed running, ultra running, road racing, cycling, and any other sport I could get my legs under. Suddenly, everything came to a screeching halt. I was diagnosed with a serious, crippling, and life-changing disease called Polymyositis through which I am attempting to navigate. Polymyositis isn’t the worst disease that can happen to you, but it can present some significant challenges and change your life in drastic ways. The onset is particularly dramatic, scary, and difficult to diagnose due to its rarity and extreme physical effects. This page serves to focus on that part of my life, both as an outlet for my own thoughts, as well as a resource for anyone else out there who is looking for others’ experiences to follow.
Wednesday, March 4, 2009
Trying to put this fire out is proving harder than I thought. I have been on 80mg/day of Prednisone for 1 week, and 40mg/day for 2 weeks prior to this one. I am as weak as ever above the waist… I cannot raise my arms above shoulder level and cannot lift my neck off of the pillow. My hands are useless, I can perform basic push/pull functions of very little force, but with no dexterity. I can still sit/stand on my own, which remains the bastion of my independence and functionality.
I am perceiving feeling the start of some Prednisone side effects. My joints feel like those of a 100-year old woman. My hips and knees feel taxed while walking, the bones in my shoulderblades feel like they grind against everything they touch, like the mattress or backs of chairs. My eyes feel puffy and slightly blurry. I feel uncomfortable in my own skin, like a snake that needs to molt.
Every day that goes by is one more that I hadn’t planned on feeling this way. Every morning begins with an internal curseword when I realize that it’s still here. In general, I still maintain what I think is a decent level of optimism and foresight, but I also cycle through fear, disappointment, and just plain weariness on a regular basis. The physical weariness definitly takes its toll. I sometimes compare this to running a marathon with no sense of distance or time. Are we at mile 2 or 23? If I could know the distance and terrain ahead, I could plan my race, both physically and mentally. The weary part is putting one foot in front of the other with no idea where I’m going, how long it’s going to take to get there, or even if there is a definitive finish at all.
Today is obviously a little bit of a downswing in mood. I’ll bounce. Really.
I mentioned yelling at God on the trail a few weeks back and being frustrated at hearing silence in return. Well, He yelled back in a big way this week. The rheumatologist looked me and stated verbatim, “Your liver tests are almost normal. Your CK readings are normal. This is a miracle. There is a higher power at work here.” I am corrected and humbled. I am so blessed and fortunate to be doing so well.
I am running a few miles at a time, I’d like to get some power back into the equation and start running some “strong” miles. I am still lifting weights, and am at about 60%-80% of what I was lifting prior to disease. I still have more noticeable deficiencies in certain muscle groups, especially those closer to the core of my body. It remains difficult and awkward for me to get up off of the floor. I still have quite a bit of stiffness and some arthritis in certain joints. However, I am certainly bouncier and more perky. Prednisone continues to bother me and make me unlike myself at times, both physically and emotionally. But good reports mean that I can continue to taper. I started 30 mgs daily and will drop to 20 in a few weeks. I continue to feel an increased sense of normalcy in everyday life.
I still wonder and worry about what kind of cycle this “up” phase is part of. It’s easy to get cocky and start taking this feeling for granted. I also acknowledge that I am still on heavy Prednisone, and am cycling through emotional highs and lows. My last checkup was a major high, and I will get frustrated and sad again when it wears off, focusing more on the deficiencies again rather than the gains. What an experience, all of it.
Katie has so much more to say about her journey which is very inspirational. To see more visit her blog www.polymyositisrunner.blogspot.com.
Submitted by: Katie Helms 18-10-09
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