An update ...

[LemonZest11]

I reported a suspected flare about a week ago and followed the usual advice of returning to the dose I last felt well on. That was 5mgs, so stayed there for a couple of days with no improvement. PMRpro also suggested that maybe try 7mgs which I did for 4 days then back to 5mgs. After a couple of days at 5 it looks like I might have managed to turn things around. I’m back on track, feeling well with a Rheumatologist appt this afternoon. She’ll tell me to start reducing again but I’m planning on staying at 5mgs for the rest of the year and then rethink the tapering. Thanks for all support and advice, it’s so reassuring to have friends here to steady the ship. xx

[SheffieldJane]

Glad your ship is back on course. You are doing great!

[LemonZest11 in reply to SheffieldJane]

Thank you Jane, how are you going? Calm waters?

[SheffieldJane in reply to LemonZest11]

The odd shark but I can see land. 😉

[LemonZest11 in reply to SheffieldJane]

Good news ... those sharks can be treacherous but you can outswim them. Just beware of pirates!! xx

[SheffieldJane in reply to LemonZest11]

Especially old Johnny Depp I’ve heard.

[PMRpro Ambassador]

There are rheumies (the better and more experienced ones) who suggest not trying to reduce during the winter as cold and damp don't help PMR at all! Maybe the extreme weather you are having isn't helpful either!

[Theziggy in reply to PMRpro]

That would equate to 10 months of the year for me - given the local weather!

[PMRpro Ambassador in reply to Theziggy]

I'd have thought 12 - 10 months cold wet season and 2 months less cold wet season ...

[LemonZest11 in reply to PMRpro]

Are you talking to me PMRpro? I’m in the west and our weather has been perfect. The east coast is suffering though. Saw my doc today and she was disappointed that I upped the pred to arrest the flare. She told me to take anti-inflammatories next time!! I told her that I had read a lot about that and she insisted that it was preferable to upping the pred. I’m so glad that I have you and the others to give me advice that works and makes sense. I don’t see her for another 4 months ... “keep reducing” she said. I told her about the study that showed that tocilizumab can mask inflammation in blood tests and she said she knew that but just wants me to continue to reduce anyway. I really like her, she has been so helpful with getting to the bottom of my shoulder and much more, but I was surprised by her attitude today.

[PMRpro Ambassador in reply to LemonZest11]

It might be preferable if it worked (I don't think so though given you are doubling the range of adverse effects). But you shouldn't be taking antiinflammatories with pred long term anyway.

I couldn't remember which side you are - just knew Sydney the other day would have flattened me!

[LemonZest11 in reply to PMRpro]

Yes, they are sweltering but over this side we are used to the heat. Strange weather ... they are experiencing a heatwave and we are having beautiful days in the 20sC. The doc said to “try” anti inflammatories before I consider increasing pred. She thinks my tapering plan is “very cautious”, but I told her I am cautious. Thanks for your advice ... invaluable!

[PMRpro Ambassador in reply to LemonZest11]

I don't agree btw - 1 or 2mg more pred has far fewer risks than NSAIDs. Why are they so wedded to them?

[LemonZest11 in reply to PMRpro]

Yes, and I only had to go to 7 for 4 days and then back to 5. Yes, it’s 1mg more than I was on but I am making progress. I don’t know ... some say that 5mgs is “safe”. As I have said, and I hope you agree, I am going to stay at 5 until after Christmas, or perhaps sneak in a couple of 4.5mgs and then rethink everything in the new year.

[PMRpro Ambassador in reply to LemonZest11]

It is what is called a physiological dose - a similar amount of corticosteroid to what the body produces in the form of cortisol and which is essential to life. As long as enough foreign steroid is present the body doesn't make more. Too little can cause aches because the adrenal function hasn't caught up. Rod Hughes likes to keep patients at 5mg for up to 9 months to let adrenal function catch up and it possibly also tides you over to a lower disease activity so the rest of the journey tends to be easier. I'd be in no hurry ...

[LemonZest11 in reply to PMRpro]

Thank you. That helps a lot and makes great sense. I’m going with that. I don’t see her for 4 months ... slowly slowly. You really are quite wonderful in your knowledge, support and kindness. How are you?

[PMRpro Ambassador in reply to LemonZest11]

Avoiding Covid!! Been a bit bad here but it looks as if the numbers are finally dropping after 4 weeks of near lockdown - couldn't leave the village without good reason! Nowhere to go though - shops opened yesterday and noone to be seen in Bozen, the regional capital with lots of shops. No tourists either - no hotels or restaurants were open!

[maria40 in reply to PMRpro]

Heard last night that we (in Worthing) have the lowest rate in the country. But I'm still nervous about going out alone after collapsing a couple of weeks ago but must get back to exercise somehow.

[Bcol in reply to maria40]

Hi Maria, hope you are OK. Noticed Worthing in your post. I moved to Worthing in 1986 and lived there for about 20 years before moving up North. Lovely town, loved being by the sea.

[LemonZest11 in reply to PMRpro]

Oh what a beautiful place ... I hope that we’ll make it back there once there is a vaccine. Thanks for always supporting everyone. xx

[RoadTrip in reply to PMRpro]

Spoke to him about 5mg for a number of months, he said not standard, only applies if routine reduction is not suiting a particular patient.

[PMRpro Ambassador in reply to RoadTrip]

There is no standard or routine reduction. A study in Leeds a year or two ago found far more patients struggle to regain adrenal function after long term pred than had been thought previously. And THAT is the main reason for hanging about at 5mg or so. As patient, I'd rather hang around and go slowly than rush and end up so fatigued I can't live a normal life or, even worse, have a flare because of the PMR and have to go back and start over again. But the bottom line is: does he listen to patients when they say they are struggling or does he just plough on?

[RoadTrip in reply to PMRpro]

Agreed re hanging around 5 mg one of the reasons I asked. Said would listen to how coping and consider symptoms (said blood tests not much use for 15mg and below) as long as some justification, just does not automatically keep at 5 mg for a long period.

[PMRpro Ambassador in reply to RoadTrip]

And did he say WHY are blood tests not much use below 15mg? I know plenty who find they go back up if the dose is too low whatever the dose. And a lot for whom blood tests are useless anyway ...I do find the convoluted logic we meet rather interesting ...

[RoadTrip in reply to PMRpro]

Re bloods didn’t really say, I do find it a bit confusing as relied very heavily at higher levels of pred (30+) as was getting blood test every change of dose, now on 25mg for 2 weeks, blood test 4 weeks away.

[PMRpro Ambassador in reply to RoadTrip]

I really do get the impression that some doctors will make it up as they go along to suit their narrative. There are patients for whom it DOESN'T match - and that is why they have said all along that symptoms are far more important than lab results. But as a general rule? Don't agree at all.

[SusanEleven in reply to LemonZest11]

For what it’s worth, my rheumatologist says the opposite. She would much rather I up my Pred one or two mg than take anti-inflammatory drugs.

[LemonZest11 in reply to SusanEleven]

If only there was consensus. But then that would make things too straightforward, wouldn't it. 🤷‍♀️