Account of a true breakthrough
Posted , 7 users are following.
I am approaching two years of PMR. My medrol dose is 6mg and has been for the past six weeks.
This morning I awoke and noticed a significant difference in how my body felt. As the minutes wore on I realized that my lower back was NOT stiff. It is the first time in memory that it has not been. (I know that there was a time before PMR that my back was not stiff but I could not actually remember it.)
It has been several hours now and there is still no stiffness. Whatever happens from here on is unknown, but I now have that vivid feeling of lack of stiffness. It is wonderful.
I would be interested to learn if anyone else on this site has had a similar experience. And what subsequently occured.
0 likes, 4 replies
EileenH philoso4
Posted
I do know people who said they woke up one day and felt "different" - subsequently they were able to reduce their pred dose to zero without any flares. One friend with PMR had that experience and was able to stop pred altogether but it only lasted a few months before PMR raised its head again. She did enjoy the interim though.
I have that experience in terms of stiffness most of the time it has to be said - because I refuse to compromise on pred dose and with enough pred, I have no stiffness due to PMR. Since I am Lodotra/Rayos I have no morning stiffness. As long as the steroid dose is adequate - there should be little or no stiffness.
greentea26 philoso4
Posted
That's really good to hear!
Can you relate this great new develoment to anything that has been happening in your life of does it seem totally random?
philoso4 greentea26
Posted
julian. philoso4
Posted
its a lovely feeling, enjoy it.
First time a general sense that something had changed. Overnight. A slow dawning awareness of something absent. Difficult to put a finger on it for a while. Confirmed by tackling hills and walks that would previously have left me struggling. And nice to have exercise stiffness instead of pollywhatsit stiffness. Around 8mg if I recall correctly. Time to try reducing pred, but still cautiously.
Last October the reverse. The slight pain/stiffness in my hands spread to wrists. Couldn't open the marmalade jar for breakfast. Time to increase pred from 3.5mg to 5mg. Slow progress back to 3.5mg a couple of months ago.
A couple of weeks ago another step change. Wrists ok, hands just stiff in the morning. Time to try 3mg. So far so good somewhere between 3.5 and 3. I'm in the middle of a long drive over rough roads and expected some hand pain from grasping the steering wheel. But so far that's not happening. I did have a day of stiffer hands after wielding spanners for a couple of hours of roadside repairs. To be expected. But I'm getting better at sensing the difference between when I overdo it and things go back to normal fairly quickly and when something has changed.
Nowhere near zero yet. The changes aren't that radical for me. But certainly leave me optimistic. Hard to define but I'm currently reasonably confident I can be stable at 2.5mg.
Always difficult to know if its just my imagination of course. But there are some changes that are overnight and seem permanent. And its also tempered by changes in what I'm doing.