Joined: 08 Jun 2016
|Posted: Wed Jun 08, 2016 8:55 pm Post subject: After 3 ½ years free from pred - now 7 ½ years in remission
|Mrs K asked me to post a shorter version of "my story". I was told I put it under the wrong title so here it comes again
After a week´s trip to Athens the first week in April 2005, I felt very strange and had a dry cough. After some weeks with blood works and a biopsy in a temple 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 far too low for GCA) and I didn´t get very much information about pmr. Just that it would probably take ½ - 1 year to be free from pmr. I was also told I was lucky to have a disease that would pass in a short time. 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, 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 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 (due to the pred) even if my wife got tired despite being in better condition than I.
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 below 5 mg 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. 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. 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. 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. To encourage those who are fighting I proposed to start Club Zero some years ago and we now have many members.
Free from pred since December 2008. OK so far. Member of Club Zero