One year on

[SID3]

I thought it might be helpful to post my one year retrospective given that (so far) my experience has been more positive than I expected at first diagnosis, no small thanks to those on this forum who provide such helpful advice.

It started in April 2021 with severe pain in the left wrist, which I assumed at first was an injury and then carpal tunnel syndrome. An injection for the latter seemed to make things worse, and then the pain became really savage depriving me of sleep for several weeks (not helped by the OH breaking her shoulder and needing help just to get some sleep in a chair). I then fainted one morning just after taking some Nurofen express leading our daughter to call an ambulance. By this time I was also getting bicep and shoulder pain and some soreness in the thighs. After a certain amount of indecision I was sent to a rheumatologist who put me on 15mg of pred, which immediately brought the wrist pain down to a tolerable level. I was lucky that this sequence of events got me a PMR diagnosis only two months or so after the first symptoms. Since then I have been doing the DSNS taper and am currently at 5.5. I had to give up golf for the first few months but after that have been able to play once a week, while we have also travelled to Italy twice (where I have some part-time work), most recently by car returning with just one overnight stop. This felt like the old days.

I can have no complaints when I see how hard PMR and GCA have hit others. So far I have not had a flare, though I am under no illusions about what might be round the corner. I still have some soreness in my upper arms and shoulders, plus weaker wrists, but basically I live quite close to my pre-PMR life. My criterion for assessing my condition is whether I need to ask for help in the morning in getting into a shirt and jacket, and at the moment, even though it is not a piece of cake, I am self-sufficient on that score. I have been tipped into diabetes-2 by the steroids (52 HbA1C) but hope to manage that through reductions and diet (I am already on the low weight side, however).

On reflection I think that my two AZ vaccine injections (1 Feb and 20 April) probably stimulated an auto-immune reaction, to which I am liable given a history of ankylosing spondylitis (HLA- B27 Positive) even though that burned out in my 40s, 30+ years ago.

Best wishes to everyone on here, in the hope that the summer will do us a power of good.

[PMRpro Ambassador]

Cut carbs - and then you should be able to eat as much as you like of other lovely things while getting that Hba1c down a bit.

You have done well so far and if it were the AS waking up I'd have expected you to have more difficulty with reducing the pred. I often say to people they will look back in a year and see how far they have come!

Here to the UK with one overnight stop isn't bad! Where were you starting from?

[SID3 in reply to PMRpro]

Thanks. I'm trying to cut carbs, but unfortunately love bread, pasta, wine etc. The outward trip was Cambridge to Bologna with two overnights, but on the return we had to get back quicker - so via Mont Blanc and a stop in Burgundy. The French motorways are terrific but now very expensive.

[PMRpro Ambassador in reply to SID3]

They always were!!!

It's about priorities I suppose - the risks of high blood sugar are usually enough to compensate for missing out on bread and pasta!

[SID3]

Yes, I agree in principle!

[PMRCanada]

Wonderful to read your update. Sounds like your journey thus far has been manageable with flavours of pre-diagnosis.

Your story/update will likely be helpful for other newcomers to read. Nothing like lived experience of peers to provide hope.

Wishing you many more good years moving forward.

[SID3 in reply to PMRCanada]

Thank you! You have been unlucky with PMR arriving so young. I hope things improve soon.