Hello Forum members,
I’m new to this Forum, but not new to PMR.
My state-of-play is that I was diagnosed with PMR back in Feb 2015, when I started with Pred.
The diagnosis took a while, but we got there in the end and Pred made an almost unbelievable difference once I was on it.
I finished with Pred in Aug 2017 and that was that - I thought.
The tapering with Pred wasn’t entirely smooth, but I now know how much better things would have been, physically and mentally, had I known about various tapering plans that are readily available via PMRGCAuk.
But then, I didn’t know about a Forum such as this either, which would have made a huge difference to everything.
Just recently, I was back at my doc’s with what I suspected was PMR raising its head again. I had bilateral probs starting to kick off in shoulders and groins, and I was pretty sure that it was PMR.
My doc was great (he listens!) but was reluctant to kick off Pred again in case it wasn’t PMR. I agreed with that. He triggered some bloods and arranged an x-ray of my hips.
At the follow-up appointment a fortnight later, my doc said that my CRP was raised and he took one look at the very much increased pain I was in and agreed there and then that it was PMR.
That was good, as by then I had no doubt. It was all so familiar!
It had become pretty interesting in shoulders, neck, lower back, groins and knees.
The pain was round the clock. The usual: couldn’t sleep much as there was no position that really helped; rolling to get out of bed quite an experience; trying to put on a sock and actually tying a shoelace a marathon of very severe pain; stepping into underwear without support not possible; getting into or out of my car resulting in gasping and being white-faced after having had to lift at least one leg by hand.
And so on. Many here will know the score.
Pretty grim, yes, but as the memory of it all came back I hung onto telling myself “pretty normal”.
I started back with Pred a couple of weeks ago.
Talk about a miracle!
Within a matter of hours on the very first day, the pain was reducing beautifully.
We’re all different, but by the time I recommenced with Pred the pain had reached a point where I couldn’t have cared less about having to revert to Pred. Nothing mattered, except getting that desperate pain under control.
That frame of mind has stayed with me - plus more in large part thanks to the content of this Forum.
I accept that my PMR has resurfaced and that I was ‘merely’ in remission.
I accept that I need Pred.
I accept the whole deal, and I am grateful that it’s nothing worse, that I have a wonderful doctor who will listen to what I say when it comes to tapering, that there’s a Forum such as this with some remarkable folk posting.
My wife died in Apr 2018. We were separated, but we still cared for one another and that was perfectly comfortable.
Her illness was very rare (about 1 per million per year in this part of the world) and it brought her great suffering.
Eventually, I became her full-time carer.
Her blood was maintained through many, many transfusions as we battled to keep platelets and haemoglobin at a reasonable level while we hoped that the many meds she was on would prompt her immune system to revert to what it once and stop destroying things.
Through it all, she had desperately low white blood cells (can’t transfuse those) and eventually she had weakened to the point where the inevitable infections finally overcame her.
The day came when I held her hand and talked gently to her as she took her final breath.
I mention this because, inevitably, it puts my current PMR well and truly into perspective.
Another ‘perspective reckoner’ is the fact that the cancer for which I had surgery back in Feb 2015 has not returned.
So, bad luck for me about PMR being well and truly back.
Well, tough!
Because it’s so ‘minor’ compared with what my wife had and went through, all with just about no hope (and actually without a single word of complaint - not one).
I have access to Pred that is once again controlling things better and better as the days go by.
I have access to this wonderful Forum.
I have a good doc who is not only knowledgeable but who listens readily (otherwise he wouldn’t be my doc).
I have hugely more knowledge of my condition than last time around, thanks to this wonderful Forum.
I have tools, such as a terrific spreadsheet I downloaded from PMRGCAuk for tracking my Pred history, as well as a downloaded Taper Plan (same source) all ready to go when the time is right (no hurry).
This time, it all feels so different.
Doing much reading in this Forum has given me a whole lot of strength. Setting up the tools I downloaded from PMRGCAuk has added considerably to underscoring that. I feel, now, that I have a plan and know how I’m going to do my level best to face this, instead of bouncing helplessly off events that, last time, left me pretty much bewildered.
It’s a big difference.
My heart goes out to anyone freshly diagnosed with PMR.
One way and another, it can come as one heckuva a shock.
But it’s what it is. Everything isn’t ‘all over’ with the diagnosis, and there’s masses of help and understanding and input right here, on this Forum.
For me, my personal take is that PMR isn’t going to kill me. I can control the pain brilliantly with Pred, I know how I’m going to tackle the whole deal and, perhaps as important as anything else, I accept it all.
Basically - I’m up for it.
And I’m not afraid.
I send greetings to all on this Forum, as well a Huge Appreciations to all those who input so much and so well.
None of is alone.
PredAgainJersey
P.S.
Sorry to have ‘gone on’ so much!
Oh, before I go…
I have an app (free) for my Android phone that tracks my meds and provides reminders, etc. It’s hugely useful and is called Medisafe (no connection of any sort with me).
I first got it to help with my wife’s arsenal of meds.
There are others, but that’s what I’m using as one of my tools in my PMR journey.
PAJ
Here we go again …
Confused carer again
Pain in my hands since, possibly, reaching 0mg Pred
Here we go again
