Now the taper to 7mg

[IdasMum]

Have been waiting to get past our trip to UK and our interviews for naturalisation before tapering again. I took 7mg on Thursday am, knowing I'd not really notice until at least 24 hours later.

I was grumpy and achey on Friday, so am guessing the 1mg drop was impacting.

The desire to move more quickly is high, especially as I think the PMR is very low grade now and it's the addiction to steroids causing me issues. But I'll be patient and go slow. I have my next appt with rheumy towards end of July.....I really wanted to get to 7 by then but that would be pushing it.

We had our interviews for naturalisation on Thursday during the heatwave. Was quite anxious that the prefecture would close, as schools had been closing in cities. Luckily they didn't and a very kind lady coaxed us through our brain fades and suggested our interviews were favourable. We now have up to 12 months to know whether France wants us!

We've spent almost 4 days behind closed shutters with air con running and fans. Night time has been horrible and the other night I felt like I was having one long hot flush. I bought a small portable air con machine on Friday and we had a much better night with that pointing into the bedroom. The weather has relented today and was only 29C at it's high point and I managed some weeding this morning early, it was lovely to open the house up to allow some fresh air to flow through. It's only June! I am worried for what July/August will bring and am pretty certain these weather extremes are the new norm.

Hope those of you suffering the extreme heat are coping. I am so pleased we have tiled floors, great for my bare feet.

[Hidden]

Sounds a bit stressful!!

What makes you say steroid addiction, there's no physiological basis for it as far as I am aware but happy to be corrected. If you get withdrawal that can be controlled by painkillers. If symptoms return that the pmr doing its thang!

I ended up having a cold shower at 1am and then slept. I was tossing and turning before that like a kebab on a BBQ!

[IdasMum in reply to Hidden]

My rheumy says I am addicted. Maybe that's how they think of it here in France.

My PMR has reduced now the hard part is persuading my body to reduce it's steroid craving.

[Hidden in reply to IdasMum]

Sounds like a way to lay blame. Hopefully you can manage a drop. It always took me a couple of times or more using dsns. All you can do is try OTC painkillers and if it helps then steroid withdrawal....unless pain starts a week.or two in (grandmother suck eggs)...but we all need reminding!

[Hidden in reply to IdasMum]

Sorry...the Rheumy' has really no right to say that to you. For all his faults at least my Rheumy was more than happy to go at my speed. He told me to stay at 6mg as long as it takes. We know that 7mg is a tough one so should build you up. Sorry 🙄😁

[SheffieldJane]

Good luck!

[PMRpro Ambassador]

Tell me more about your portable aircon machine? We have no aircon, it isn't usually needed up here as it always cools down overnight, but after nearly 10 days of low to mid-30s in the afternoons the house is slowly warming up and I can feel it. We started the lockdown before it got over 30 and mornings are lovely. But later - not so much!

You are NOT addicted to pred - it is a different thing. The body is dependent on the supply of artificial pred yes, but would he tell a diabetic they are addicted to insulin?

And that the PMR is lowgrade only means one thing: you can get to a lower dose to still manage the syptoms. However low the activity is, the inflammation will build up without enough pred and you would eventually end up back as sore as you were originally, it would just take longer.

[IdasMum]

I think it is a matter of semantics.....bearing in mind I am translating her letter to my Dr.

The phrase she used was, 'elle est accrochée', she is hooked. It may have a different intention here. She is happy I am knowledgeable and going at my own speed. I think my Dr is more keen for me to reduce and that's the case for many GP's with a lesser understanding.

Portable Air Con, size of half a tumble drier, has an extendable venting hose to shove out a window. We (Mark) does some jiggery pokery with windows to reduce the opening as much as possible. Move it to wherever you want it and where you can vent it. Uses refrigeration as It extracts water from the atmosphere, condenses it and collects it therefore cooling and drying your room. You need to empty the water chamber every so often (I've been watering the garden with this, so am feeling smug lol, oh and achy carrying heavy watering cans around!)

Ours was bought 13 years ago 2 days after arriving here to a heatwave and not being able to unpack.....was amazed once we'd made a breathable atmosphere how much we could achieve! We use it most years, I am impressed it's still going so well.

Thanks for you info and support. I will stick at 7mg one time per week for a while and be happy I am no longer needing much higher doses.

[PMRpro Ambassador in reply to IdasMum]

There are quite a few doctors (not just yours) who are convinced we are so "attached" to the pred that we don't WANT to stop taking it and that is why we can't reduce the dose because we are so convinced it is the only thing that helps us. They don't quite get the idea that it is.

Add to that the ridiculous conviction that PMR lasts 2 years and then is gone ...