The End May be in Sight, on the Other Hand it Might not be.
Hi all, it is time for my annual update and the four year mark was officially the end of June, although as with many others, with the benefit of hindsight I was probably suffering from PMR for a good few weeks/months before diagnosis.
It’s not been a bad year for the PMR but my CTS has gradually gotten worse and after discussions with the Doc I spent some time back at 10mg as part of our joint decision to see if it helped with the pain and disability. It did, but I decided that the improvement was not enough to justify another two or so years of slow tapering so I spent another few days dropping back to where I started from which worked fine.
I had an interesting end to the year when I suffered what appeared to be Adrenal Insufficiency, Blood Sugars dropped out of sight as did BP, diarrhea etc and most of the symptoms you don’t really want. Anyway an interesting couple of days but got it sorted without resorting to A & E.
Had my twelve month review a few weeks later, was back on 2.0mg about a month by then and nurse/doctor both decided that my adrenals were probably still asleep and arranged an early morning Basal Cortisol Test. The result surprised us all as it came back at a whopping 769 mnol/L, not low but the total opposite, way above normal. We tested again a few weeks later and it still came back high but only just above the high limit so we’ve just accepted it for the time being. Blood tests were generally OK, ESR was very slightly up at 12.
Around this time I also got put on the waiting list for surgery for my CTS on both wrist.
Things got a bit more interesting in Feb/March as for family reasons (don’t ask) we had to move, which sadly also meant moving from our outstanding doctors and surgery which was all a little stressful. Gave myself a treat of an extra 5.0mg for two weeks. Anyway in the end it all went well and we are only a few miles from where we moved from and our new surgery/doctors would seem, from first contact (think that was a phrase from Close Encounters of a Third Kind, but could well be wrong) to be as equally good as our previous ones.
In real terms a fairly straightforward year and now on 0.5mg with two weeks of the official five week taper to go. However, that doesn’t mean I’m off Pred in a couple of weeks as I have no intention of stopping at that point. Not sure what but I will put something in place to extend things maybe two days on one off completely etc and see how it goes, there is no hurry and I’m not rushing nor being put under any pressure to stop.
To finish, I have continued to be lucky with no side effects from Pred or anything else I take, no pressure from doctors who have been excellent from the start and always been available to me, (even throughout Covid both on the ‘phone and f2f.
And (yes I know DL you shouldn’t start a sentence with a preposition) this forum, in particular the outstanding knowledge and patience of PMRpro, DL and MrsN, together with the accumulated wisdom of too many on the forum to mention by name that keeps us all on track in our times of difficulty. You all give me/us the power/ability to talk to our medical staff in an informed and knowledgeable way, which for me (already said I’ve been lucky) has been much appreciated by my doctors.
Best wishes and good luck to everyone on this journey and pain though it may be(pun intended) we all have to remember there are far worse things we could be suffering from.
Peter
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