One year on: I thought it might be helpful to post... - PMRGCAuk

PMRGCAuk

20,122 members37,704 posts

One year on

SID3 profile image
SID3
6 Replies

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.

Written by
SID3 profile image
SID3
To view profiles and participate in discussions please or .
Read more about...
6 Replies
PMRpro profile image
PMRproAmbassador

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 profile image
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 profile image
PMRproAmbassador 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 profile image
SID3

Yes, I agree in principle!

PMRCanada profile image
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 profile image
SID3 in reply to PMRCanada

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

You may also like...

GCA/PMR One Year on (?)

including my shoulder. My shoulder consultant (after many X-rays, MRIs) now believes the...

One year

been such a valuable tool & so much help to me. I work full time, help out often on weekends with 7...

GCA symptoms after one year of discontinuing prednisone

However recently I have experienced jaw claudication only while eating , have lost some weight, and...

GCA DIAGNOSED ONE YEAR AGO AND STRUGGLING...

I used to be. Though I have lost the moon face, I still carry 25 extra pounds, have osteopenia,...

Doctor says 20mg for one year

and then start to reduce. I was diagnosed with PMR on August 11, and put on 50mg for 1 week and...