The story of my disease and journey – followed by two questions

This column is supposed to be personal, so that’s what I’ll let it be. I’m going to tell this story about myself to the discerning reader.

The disease
I was 55 years old when the story began. Previously I had usually been pretty healthy. My mother contracted arteritis temporalis at an advanced age, she suffered from angina pectoris and had several heart attacks. There were no other special diseases in the family.

It was the afternoon of 5 November 1997. I was going to pick up my child from school. While playing with my child’s friends I was accidentally struck on the chest. I felt pain immediately, and I thought that I had broken a rib.

The pain increased rapidly and I experienced stiffness in the upper part of my chest, my shoulders and neck.

During the next few days I could hardly get out of bed. I had to roll carefully round to get into the desired position and then carefully try to lift myself up or roll on to the floor. The chest pains and stiffness were all too evident. Moreover, one of my jaw-joints felt painful.

Blood tests showed SR 83, CRP 192, rheumatic factor positive 274. Other relevant blood tests and X-ray examinations proved virtually normal.

I was admitted to the Diakonhjemmet hospital in Oslo, the rheumatological department, where no definite diagnosis could be made. Cancer was discounted, and there was no trace of infection. A biopsy of the temporalis artery was negative. The stiffness in the neck and chest mentioned, along with some arthritic symptoms, led to the suspicion of polymyalgia rheumatica. But symptoms from my back, hips and thighs were lacking

I was given 40 mg + 20 mg doses of prednisolon daily before the symptoms began to disappear. SR and CRP fell. It ended up with polymyalgia rheumatica being the most probable diagnosis.

Then I developed an irregular heartbeat. An ECG examination showed fibrilloflutter. A subsequent registration showed plenty of extra cystoles, in addition to the fact that I experienced several episodes of flutter.

In the blood test there were 19,400 white cells, with 17,000 granulocytes. This was regarded as a reactive pattern, with no suspicion of malignance.

I gradually cut back the prednisolon dose to 15 mg a day. But I couldn’t go lower than that. If I tried to reduce it even more, I immediately experienced symptoms.

The symptoms were headache, mainly in the temple region, but my whole head felt heavy. My brain wouldn’t function. I felt out of sorts at meetings and unable to perform intellectual tasks satisfactorily.

The most obvious sign however was my moods: I had sudden fits of anger and bad temper. My posture changed; I hunched up and my head hung down

My wife noticed it right away if I took fewer tablets and said, “I think you must have reduced the dosage!”

So I ended up taking 15 mg of prednisolon daily for about a year and a half!

I could see the side-effects coming. My skin became thin and shiny. If I scratched myself the wound took a long time to heal. My face swelled up. And my waist developed a fatty bulge.

I reckoned that I was on a downhill slope.

High Lp(a) was detected, but it did fall to some extent. I had three basalioms one after the other at short intervals, which were all excised.

We came to the end of July 1999. I had tried to go down to 12.5 mg of prednisolon a day, but immediately had symptoms and had to return to the “usual” dosage. Then I tried 13.75 mg – which for a few days seemed to keep the symptoms at bay.

The journey
Then I travelled to the Middle East. There I also visited Mashad in eastern Iran near the border with Afghanistan. It is a holy city, a destination for all Shia Muslims. Around 15 million pilgrims visit the city each year.

I was there for only a couple of days. I walked across the great squares, under the golden cupolas of the mosques, through the mosaic-adorned portals, among the milling crowds of men, women and children from all corners of the world.

This is the place of Imam Reza, overwhelmingly beautiful. The Imam’s sarcophagus is situated there.

I walked on the soft carpets, among a thousand others who were resting, waiting, reading and praying, with a feeling of closeness to something divine.

There is a fountain there, and it is said that a sick person who drinks its water and prays may get better. I did so. Then I walked back to the hotel. I never took any more prednisolon.

I went straight from 13.75 mg to complete abstention, after having taken large doses for a year and a half.

Since then I have been healthy, with no typical symptoms.

The questions
That was the disease. And the journey. So let’s look at the two questions:

Was the original diagnosis, polymyalgia rheumatica, correct, and what differential diagnoses would one suggest?

Is it possible that God exists?

18990cookie-checkThe story of my disease and journey – followed by two questions