Back On The Juice
Polymyositis is a tricky illness. Just when I hoped it was contained the disease displays new life.
It all started last spring. The diagnosis was based on a highly elevated phosphocreatine kinase (CPK) enzyme level and a handful of other severe arthritis- and fatigue-like symptoms. The CPK is basically an objective measure of an enzyme the muscles leak (the higher the level the greater the inflammation, pain, discomfort and fatigue). When I saw my family practice physician, my CPK level was 900. Two weeks later when I visited a rheumatologist the CPK had climbed to 1,700. Your CPK level is likely 50-100.
The first line of defense was heavy doses (40mg/day) of prednisone (a steroid). That brought my CPK down to 1,200. Soon after I added 15mg/week of methotrexate (disease-altering drug).
A summer of taking the two drugs together lowered the CPK to 98. So, I tapered off the prednisone, ending the steroid maintenance entirely in late August or early September.
Fast forward to late November, when I felt the tell-tale neck and shoulder pain return. Soon my wrists and fingers were feeling tight, too, so I visited the rheumatologist in December. CPK was 198, just two points within the "normal" high limit of 200. So we made no changes to the meds (staying on 15mg/week of methotrexate).
Well, the neck and shoulder pain increased. So, too, are my hands, wrists, knees and other joints in discomfort. So back I went to the rheumatologist. Today's results from last week's lab tests: CPK=440.
As a result, the doctor is increasing the methotrexate to 18mg/week. Further, I've got the green light to experiment with daily prednisone doses ranging from 5mg/day to 10mg/day for one week or five; it's up to me. I'm going to try 5mg at first and see what happens. So, it's back on the juice (albeit much lower doses than before).
The one good side benefit of the resurgence? My latest research indicates polymyositis is often a self-limiting disease, meaning it runs its course and can go away after two, three, four or even five years. So, I'm hopeful this will all soon be a thing of the past. But until then I'll begin paying closer attention. The hope-it-will-go-away approach certainly doesn't work.
It all started last spring. The diagnosis was based on a highly elevated phosphocreatine kinase (CPK) enzyme level and a handful of other severe arthritis- and fatigue-like symptoms. The CPK is basically an objective measure of an enzyme the muscles leak (the higher the level the greater the inflammation, pain, discomfort and fatigue). When I saw my family practice physician, my CPK level was 900. Two weeks later when I visited a rheumatologist the CPK had climbed to 1,700. Your CPK level is likely 50-100.
The first line of defense was heavy doses (40mg/day) of prednisone (a steroid). That brought my CPK down to 1,200. Soon after I added 15mg/week of methotrexate (disease-altering drug).
A summer of taking the two drugs together lowered the CPK to 98. So, I tapered off the prednisone, ending the steroid maintenance entirely in late August or early September.
Fast forward to late November, when I felt the tell-tale neck and shoulder pain return. Soon my wrists and fingers were feeling tight, too, so I visited the rheumatologist in December. CPK was 198, just two points within the "normal" high limit of 200. So we made no changes to the meds (staying on 15mg/week of methotrexate).
Well, the neck and shoulder pain increased. So, too, are my hands, wrists, knees and other joints in discomfort. So back I went to the rheumatologist. Today's results from last week's lab tests: CPK=440.
As a result, the doctor is increasing the methotrexate to 18mg/week. Further, I've got the green light to experiment with daily prednisone doses ranging from 5mg/day to 10mg/day for one week or five; it's up to me. I'm going to try 5mg at first and see what happens. So, it's back on the juice (albeit much lower doses than before).
The one good side benefit of the resurgence? My latest research indicates polymyositis is often a self-limiting disease, meaning it runs its course and can go away after two, three, four or even five years. So, I'm hopeful this will all soon be a thing of the past. But until then I'll begin paying closer attention. The hope-it-will-go-away approach certainly doesn't work.
posted by Erik Eckel at 9:13 PM
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