Ups and downs and Ups!: The first up was when I... - PMRGCAuk

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Ups and downs and Ups!

Louisepenygraig profile image
9 Replies

The first up was when I managed to get up to a rocky outcrop in our back field. It is shaped in such a way that it has a naturally shaped seat in it so it's always been a favourite viewing point down over our house and the valley beyond. The octagonal shaped building you can just see in the back garden is a summer house that we had built when my daughter, son in law and 3 boys moved in. It acts as our own private space and is usable for 8 or 9 months of the year.

Anyway, at one time, walking up to the rock was a doddle but now it feels like an achievement so that was a physical and mental 'Up!. There was a bit of a 'down' the next day when I realised I had slightly over done things, but it was worth it.

The rest of the title applies to Prednisolone and ESR levels. I saw the doctor on Wednesday and my ESR levels have remained stubbornly in the mid 30s in spite of having upped my dose to 13mg back in March. He asked what dose I had felt 'well' on. Now I'd started on 20 but asked to come down after one or two weeks because it was making me feel too hyper and I wasn't sleeping. I was fine on 15. He suggested to go back to 15 or 20 but I wasn't keen on 20 so settled on 15 though he did say to try 20 if I felt I needed it. We looked at the results of my blood tests from April 2017. I can't remember exactly but I think initially ESR reading was in the 60s. On 15 mg it came down into the 20s. At some point last summer I reduced to 10 and it went up again. Dose was increased to 12.5. By this time I'd found this forum and knew all about slow tapers and the 10% rule. I generally felt good then as long as I didn't overdo things and by Christmas ESR was down to 14. However a slow taper to 11 resulted in lots of aches and pains and ESR up in the 40s. Now even 13mg doesn't seem to be enough! I've been referred to a rheumy now but it will probably be a few months. I like my GP but I just wish he had a bit more time. He's a good listener and understands that quality of life is important and there is a trade off between that and the side effects but it seems as if he's OK with PMR as long as it's fairly straightforward. He's said a couple of times that the rheumys often start with much higher doses. I'll get another blood test in a few weeks time and see where we go from there.

I've been on 15 for 3 days now and I think it's helping but, if need be I'll try 20. It's all complicated by the fact that I've had on and off problems with aches and pains and tiredness over the years (possible chronic fatigue syndrome/fibromyalgia) which are affected by things like the weather and what I eat so sometimes so sometimes it's difficult untangling the two even though the polymyalgia pain is different. Any way we're off to Italy for 10 days in just under two weeks with ny other daughter. I'm going to hire a wheelchair which, I hope, will reduce the number of days I'll need to spend by myself resting while everyone else goes out

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Louisepenygraig profile image
Louisepenygraig
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9 Replies

Lovely view Louise well worth your effort. Seems a cost later after the endorphins have faded but sometimes it's all worth it to keep ourselves onside. ATB

Louisepenygraig profile image
Louisepenygraig in reply to

Definitely worth it. I always feel better when I do something as long as I'm sensible and rest after.

TooSore profile image
TooSore

Beautiful view! I think airport assistance is a good idea for your trip. Remember to pace and enjoy every minute of your trip!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

What a fantastic view, so envious.

As others have said please request Special Assistance at airport - makes life so much easier and easily done. Just contact eithet travel agent or airline direct.

Enjoy your holiday!

Louisepenygraig profile image
Louisepenygraig in reply toDorsetLady

I've booked airline assistance. I did when I went to America and it was well worth it.

piglette profile image
piglette

My ESR has never been below 50 goodness knows why and my CRP is always way up too. I have been told to take notice of the pain rather than the ESR/CRP levels when increasing my dose of pred. I should not increase just because the blood markers go up.

SheffieldJane profile image
SheffieldJane

What a beautiful spot you live in, it must help everything. Have a lovely holiday.I hope you get on an even keel soon, you have a good handle on things.

Louisepenygraig profile image
Louisepenygraig in reply toSheffieldJane

It's a lovely place to live but has It’s down side too because it means driving everywhere and it's a lot of work keeping on top of things. We probably would have to have moved if my daughter hadn't wanted to live here - she's never really wanted to live anywhere else. Sometimes I do daydream of a little flat over the shops in Conwy but my husband would hate it

I hope im getting a handle on things. This forum helps enormously. Once the ESR levels get low enough I'm going to reduce very very slowly. Luckily my GP seems to trust me to manage my medication sensibly

SheffieldJane profile image
SheffieldJane

You are lucky to have your daughter right there. I guess you could shop for groceries on-line. I do so much shopping on-line now that I get giddy with excitement in a real shop.

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