Two Year update on my PMR Journey - couple of weeks early.
Sorry it's a tad long.
Hi all, I can’t believe that it is yet another year since I wrote my one-year update
“I thought I would post this as I feel that it is a success story (so far) and we don’t get to read about many of those, and it does illustrate that this disease is not all total doom and gloom for everyone.”
The above lines are from my first-year reflections and although we have all been through a lot since then I do feel they still apply to me.
At the end of June 2021, I was down to 6mg and the fact that I am, at this moment, back on 5mg might not seem to be great progress, but I am more than happy with it as are my doctors. I had a bump up to 10mg in August 2021, as , in consultation with my doctors, we decided that was a worth trying idea to get my Carpal Tunnel Syndrome under more control as it was starting to get very grumpy, and it seemed to me and the doctors to be a better option than surgery ( provoked some interesting posts at the time!!!) However, it worked!!!!
Since then, I have slowlyish tapered down to where I was a couple of weeks ago which was 3.5 mg. However, I was starting to get some unwanted reoccurrence of pain in shoulders/neck and if it was starting to be a flare, I didn’t want it to get worse. To go with that I still work part time for a local Music Service and organise and run a large Performing Arts Festival every year, made more complicated this year due to knock on effects of Covid and my Town Hall being out of Action for three years. So, I was about to get a few weeks of quite a stressful time. Anyway, after consultation with my doc we decided to go back up to 5mg a) to take care, hopefully, of the increased activity re shoulders and neck and b) to hopefully take care of any extra stress for the next few weeks. If all goes well, I’ll continue tapering down from end of July.
I keep a complete spreadsheet diary of all my meds and could tell you exactly how many 5mg or 1mg Pred tablets I have taken since starting and how many I have left at the moment, or any of my other medication as well. I also keep notes on about how I feel. This diary gets sent to my docs whenever I put in a prescription request so that they know exactly what is going on, which they love. Although they totally trust me to organise my own medication in terms of dosage and tapering, if making a major change, or have a problem, I would/do always consult with them.
Yes, I have a long-term systemic disease, which I came to terms with very early on, no point fighting it or trying to rush it, that will just lead to longer and higher doses of medication. I’m also very fortunate in that I have very few, if any, side effects from the Pred and neither do I get stressed if sleep patterns go up the creek, learned many decades ago with my OA (40 odd years) that there is no point staying in bed tossing, turning, and getting stressed. Get up, have a brew, a read, enable the joint to move around and if need be, doze in a comfortable chair/recliner.
I’m still able to walk the beasties every day, often very early, amazing what a different view of the South Pennines you get when walking at 04:00, even more different when its dark!!! Flashing lights on the dog. Had a blip with that a few weeks ago with excruciating pain in thigh/knees and shins, tried an extra 10mg for a couple of days ( with docs agreement) but that didn’t work. Also sent for knee x-ray the same day just in case my replacement knee was collapsing, fortunately it wasn’t but problem not solved so rested for about three weeks and now back to normal although seeing a knee and Musculoskeletal Specialist on Monday.
Over in two years – no chance, over by Christmas 2020 – possibly, probably unlikely – stressed about that NO – it is what it is and will go away when it’s ready. My doctors never told me it was only a two-year job but would hopefully disappear at some time.
I also highly appreciate that I have been very lucky and not suffered as many of you have/do. I also have an excellent surgery and doctors who have always been there and available from the beginning and right through Covid.
If I look back on two years ago when I was all but carried into hospital, unable to move and in extreme pain, then those little white ( in my case) tablets have been a miracle wonder drug. I have a life, without doing anything daft a fairly normal life. Thank you, Prednisolone.
My visits to the Forum may be a bit sparse until the festival is over as I am going to be a tad busy working in 4 new centres I’ve never worked in before!!!!
Take care everyone and stay safe
GCA/PMR One Year on (?)
PMR UPDATE
PMR Update
