My pmr/GCA story - Ragnar (Sweden)

Not very often a person writes about a successful tapering, so I decided to post my story. When Eileen describes the DSNS method of tapering prednisone, she writes about a Swedish gentleman who found out a tapering method, which Eileen et al developed further into the DSNS method. That Swedish gentleman is me – Ragnar.

After a week´s trip to Athens the first week in April 2005 (at the age of 67), I felt very strange and had a dry cough. After two weeks I went to the doctor. After blood work, he couldn´t tell what was wrong but made a plan where he step by step eliminated possible diseases. After some months without a real diagnose, I was sent to the medicine department of a main hospital. I had some new blood work, and then they told me that I had better have a biopsy in a temple. The problem was that I had two trips abroad coming up. I got an appointment after the first one and a biopsy showed that I had what they had expected. I was told I had pmr but they didn´t tell me I also had GCA, so I heard about that later.

I was put on 20 mg Prednisone (which is too low as a starting dose for GCA – but the subsidizing doctor didn´t see in the papers that I had GCA, I think. The next day I flew to the USA to participate in a class reunion after 50 years from graduation as an exchange student in a small town in Minnesota. My wife covered my white bandaid in the temple with skin-coloured surgical tape, so it shouldn´t show so much, especially not on the class picture. After about a week´s trip, while travelling in California by rented car, my wife used the scissors of a Swiss army knife to cut the strings that they had sewn at the biopsy. She dipped the scissors in gin from a miniature bottle we had got on the Atlantic flight – to sterilize it. Due to the cortisone, I felt great/high and on the national day of the USA, 4th of July, we walked downtown without problems. The brochure said the motel was in midtown, near downtown. I think we had to walk 20 blocks and then back – but I felt great even if my wife got tired despite being in better condition than I – the dose of pred helped me.

I reduced the pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. 5 mg is a fairly low dose. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year, I thought I would test a new regime that I had found out. After postng it, other pmr/GCA patients called it the Ragnar method. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so.

After 3 ½ years – in the middle of December 2008 – I got down to 0 and I haven´t had any problems after that – now it is 11 ½ years after coming off pred. I did some travelling shortly after coming off pred – we were for instance a week in Scotland (Glasgow, Edinburgh and a short trip to the Highlands). I just took it easy when we walked and when we visited a museum I just sat down to have a rest while my wife did it more thoroughly. Taking care of a friend´s dog keeps me busy and also makes me walk a bit more than I would otherwise do.

I had reduced my weight about 6 kg before I had the diagnose and some time after I was up to the same weight as before, which I of course was sad about. I had a moon face for some time, but for a man it probably isn´t as bad as for a woman. My advice is not to try to reduce too fast, especially not below 5 mg when every 1 mg (preferrably 0,5 mg) reduction is a very high reduction in percentage. My belief is that it is better to feel well and take the disadvantages a bit longer, especially when reaching doses of 5 mg and under. I am of course grateful that I haven´t been in pain so badly as most of fellow pmr-sufferers have.

Now, in 2020 I weigh 12 kg less than before I started tapering in 2005. Some years ago, I used the 5:2 method and later I kept the weight and even reduced by eating the right things – fish, chicken etc and at the age of 82 I am glad about my weight.

Lesson: Don´t go too fast. Then you may get a flare and the time it takes may be longer than when you taper a lower amount.

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