Small update on small reductions.

[IdasMum]

Hello all,

I started reducing in 1/2 mgs 8 weeks ago and all seems to be progressing well. I have gone from 13mg to 11.5mg (most recent drop 5 days ago) and this time have hardly noticed the drop.

I have been feeling well! Very well.....more well than I have felt for a long time and I wonder whether it is possible to feel the PMR to be diminishing even while on a relatively high dose of steroids.

When I went back on at 15mg in October (after fast reduction for new rheumy) it seemed to take forever to feel more well. I cannot recall feeling THIS well since then. I have a blood test in 6 days, it will be interesting to see the results.

In her own post @anicholson wonders whether she's had this for some time and I too have been wondering the same. I haven't felt energetic or active for several years. All things needing planning and walks around towns/shops/places of interest have been hard work and required frequent rests. I'll be amazed if I discover that the real me is full of life and raring to go

Just adding another baby photo to brighten up my post. (the photo is now a few weeks old and she's changed so much but this one makes me laugh)

Her biggest brother was here for a week last week, we really enjoyed him being here and despite it being much quieter than his normal life I think he did too.

[PMRpro Ambassador]

Think she has a decided look of you! I imagine big bruv enjoyed being the centre of attention instead of the new arrival!

I think for many people PMR lurks for a long time before its supposedly sudden manifestation overnight, I've had both - originally 13 years ago it was slow and crept up so that in many ways I hardly noticed it appearing. That makes it so easy to put down to getting older. I've had a few major flares - where I have gone from functional one day to immobile the next, despite being on a low-ish dose of pred.

And yes - whatever the dose, I think you can feel feeling a lot better. Now whether that means it has gone I don't know. One lady said she got up one day and just felt "different". Subsequently she reduced steadily all the way to zero without problems. A few months later the familiar concrete legs reappeared and she and her rheumy agreed, it was back and she started at 10mg as she was about to go on a holiday postponed previously because of PMR problems.

This time she says she has a totally different feeling about it and pred - she takes what she needs to feel WELL, not just enough to function. There may be a big difference but like me she feels life's too short.

[TooSore]

She's beautiful and so happy. Made me smile!

[IdasMum]

Yesterday I had a massive run in with French bureaucracy. There was a form I needed to complete to formalise stopping work and the only option was to complete it online. This was not working for me and each time over the last few months I'd tried, it hadn't worked and I'd got stuck.

OH made a phone call and went round in circles with the woman who took the call. He explained I was blocked from completing the form, and she repeated I must fill in the form. Finally we gave up and I was in tears.....feeling completely drained and frustrated.

So...I made gluten free Choc Hazelnut Cake, cos I needed chocolate....I was tired but needed cake. Once cooked and whilst cooling I took a short nap and then ate cake!

telegraph.co.uk/foodanddrin...

I'd had offers of help from a couple of friends (which really made a difference) and so I thought I'd give it one more go. After 2 more attempts I managed....it's done (but still needs to be posted).

Why am I boring you with this I hear you ask. Well...despite being totally stressed. The weariness I felt didn't reach my body. I was still able to make the cake and continue to do all the others things I do during the day and feel absolutely fine. I am so hopeful that this is a long term, permanent improvement.

[PMRpro Ambassador in reply to IdasMum]

Same here now - all has to be done online, including resigning! And if you think French red tape is bad - try Italian! The French are relatively sane...

[IdasMum in reply to PMRpro]

I don't believe you

[PMRpro Ambassador in reply to IdasMum]

And it is all interlinked - so if you make a mistake in one place it feeds through to everything else! Or if you register a campervan (or Ferrari) as one of your vehicles but are declaring just a low income (including a pension) they write to ask you how you can afford to run that car...

[IdasMum in reply to PMRpro]

Oh! Joined up you mean. In France it's not joined up which causes no end of problems.

I will continue to drive my unregistered Ferrari for now

[IdasMum]

Blood results are back and they absolutely confirm how I feel.

ESR 4mm 1st hour (previously 20mm) 2nd hour 11mm (previously 44)

CPR 10.2mg (previously 15.1mg)

Happy me