Why so many flares?
Posted , 14 users are following.
Every day there are posts about persons who have had flares - sometimes very bad and painful.
I have been free from pmr and GCA for close to 11 years. I had no real pain when I stared tapering or during the tapering period, so I was lucky, I guess. When I got to 5 mg pred I felt fatigue and I decided to stay on 5 mg for a year. Then I found out a method to taper which has been called the Ragnar method. I therefore tested the following method: one day new dosage, two days old dosage and then I repeated it once more. After six days, I took the new dosage for a period and next time I wanted to taper, I repeated this method. At the time (almost 11 years ago), I was posting fairly frequently on the Northeast forum, so I posted my method there as I had been successful using it and wanted more people to be able to try it. Many other persons in different countries of the world tested it and mostly with success. Somebody started to call it the Ragnar method (Ragnar is my forename).
After some time, Eileen et al extended the period for the tapering and developed a method. It was called the DSNS (dead slow nearly stop) method, and even more people have been successful in tapering as the extended period was better for the body for many. I think that it is important to go very slow. To me, it was more important than getting off pred. As I was on 5 mg I thought I could just as well stay on that for a year as the fatigue bothered me very much. Now I have been off pred almost 11 years without having a flareup. By the way, I never had a flareup as I went very slowly. Eileen is doing a great job explaining how it works and she really has helped a lot of persons.
The idea is not to get off as soon as possible - then you probably have a flare and it takes longer than if you didn´t taper so fast. Just be patient and don´t hurry - it doesn´t pay. Use the DSNS method to have a taper without flares!
8 likes, 17 replies
Guest RD_Swede
Posted
Ragner, Nice to meet you and to read all you have done to help those with PMR and GCA. You have given a lot to so many. And Eileen does the same as on this forum, as newbies like me show up and need help.
I'm here to say to other new posters.... if you are with a rheumatologist who is not going to follow the Ragner or DSNS taper program, RUN (crawl, creep, roll, what ever it takes) for your life.
I was diagnosed with GCA and PMR in June 2019 and was not in horrible shape (although I have had MS since my 20's and am now 63). I was pretty good for all I had going on. And then I went to the Rheum my PCP recommended. And he totally destroyed me by tapering me too fast, even though I was communicating very clearly with him NO NO NO. Yes, I should have rolled away with my walker earlier than I did.
Because I did not, I ended up in a relapse (higher CRP and Sed Rate than when diagnosed, not that it matters) that has totally wrecked my body (and mind and life). My pelvic girdle muscles, upper thighs, lower back, wrists and hands got slammed. And the last three weeks have been spent finding on my own the best specialists I could to get me through the screaming never ending pain. I know pain, I've lived with MS pain for a long time. This pain goes way beyond anything I've ever experienced. I am nearly 90% crippled at this time. I've gotten a Rheumatologist at Massachusetts General Hospital. Last week he devoted my first visit to treating with cortisone shots the bursitis in my hips, which appeared with the relapse. I'd never had bursitis before. He saw I couldn't walk and how much pain I was in and addressed that first.
Then I went to my MS Botox specialist for a treatment on my thigh muscles, to get them to loosen up and function.
Today I went to my pain management center and had Epidural Steroid Injection at L4-5 to treat the lower back, glute, hip and upper thigh pain.
At some point the hand center at the Rheumatology center will examine and deal with the odd cords and hills of flesh that have risen in the area where my wrists meet my hands. Up until PMR came along, I'd been living a simple home based life of quilting, sewing, knitting, taking care of my dear dogs and cats and spending lots of time with my husband. I can do as much as I can, but am terribly limited. A car ride is far to painful to take me anywhere for "entertainment." Just not worth it. It will be at some point, just not now.
There's more, but I just I wanted to share just a piece of what can happen with a bad taper program. I've learned and I am grateful that people like Eileen and Ragner are here to lead us. I just wish I'd listened more loudly. My new Rheum does follow the DSNS protocol.
Peace
bob03667 RD_Swede
Posted
Thanks. I'll try and report my results. Good timing. Am at 6 mg. Would you recommend making the reduction of the new dose to 5 1/2 or with this method could you reduce at 1 mg at time until you're off Pred?