Adivice on managing 2nd flare in short space of time
Posted , 6 users are following.
Hi about 2.5 weeks ago, on adive from Eileen, I upped my dose to 15 for a few days then dropped back to 12 which was a bt above where the flare hapened. All went well - it really helped.
The shortly affterwards, due to a bereavement, I had to do a car journey (as a passenger) from the south of Enland to Scotland. I didn't feel too bad after the journey there and while I was in Scotland. However was in dreadful pain after the journey back. That was Tuesday and it has not settled at all - in fact has got worse on the whole. I'm feeling nearly as bad as I did shortly before I was diagnosed.
So- I am tempted to try clearing the inflammaion out with a few days higher dose but I worry about any negative effects from too much yo yo ing as I did that s recently.
If I try a higher dose for a a few days what should I go up to and what shoud I drop t?
Are thee any other ways of tackling this - e.g. is there anything to be gained from taking a double dose one day? I did that before - not because of a flare but because I was crossing time zones. My GP advised it and said it wouldn't do any harm on a one off.
Any thoughts gratefully received.
0 likes, 9 replies
EileenH greentea26
Posted
It really is impossible to say because it may not be the PMR - although the stress would be enough to trigger a flare so it probably is. Try one day of more and see if it helps - if it does do the same as last time. This sort of use of a higher dose isn't quite the same as the yoyoing we mean, that's where a doctor tells you to reduce too fast or too far and you then have to go up and the error is made again and again.
I find driving causes me far fewer problems than being a passenger - it is because the car seat is in a totally different postion and it has a lumbar support. You are also moving a bit every time you change gear. As a result I do the driving in the car (OH does the camper van). If anything hurts it is the thigh of my accelerator/braking leg if we have been stuck in traffic!
greentea26 EileenH
Posted
Thanks Eileen - very helpful.
I don't drive so my only experience of stiffness from journeys is as a passenger. When I started on the pred i went from stiffenening up even after a short journey to being abe to go to Scotland pain free. However even before my recent flares the stiffness after a journey was creeping back a wee bit - but nothing like my present experience.
I will do as you suggest but this time since I am flaring at 12mg is an increase of 5mg in order?
Another quick question - on Wednesday I am going to have to do quite a lot of walking - can't really get out of it. Normally I don't really struggle to do the walking but I can feel very tired and achey afterwads.
Do you think it would be better to wait until after I've done this before putting the dose up or would that just be a few more days to let the imflammation take hold?
EileenH greentea26
Posted
Um - I think if you want to be able to do whatever it is that is involved on Wednesday you may need the pred sooner rather than later! I would!!!!
What dose did you start at? If 15mg does the job there is no reason to go higher really. It really is a case of trial and error to find the dose you need to get things under control again.
Have a look and see if you can find a lumbar support - at least, if your car doesn't have one, tends to depend on how posh a version it is! Ours is the estate version that would mostly be used by reps probably - lots of driving, no passenger. A small cushion in the small of your back may help too. And I found that since PMR arrived having my seat much more upright with the bucket of the seat higher also makes a big difference.
Just wondered - did you stand around a lot at the funeral? That can really go for PMR-affected muscles.
greentea26 EileenH
Posted
I started at 20 and got down to 10 slowly but with little problem. I'd been resting at 10 for a while (feeling okay but with a few niggles creeping in) when the first flare happened a few weeks ago. A few days at 15 (so dose where the flare happened +5) sorted it out - but I went back to 12 not 10. I think I was okay on that and would still be there if the bereavement had not happened.
Lightbulb moment about the standing around. As it happens I did not stand around too much at the funeral. However the day after I came back I did do something that involved a lot of standing! Probably affected me a lot more than I realised at the time
EileenH greentea26
Posted
It all mounts up - and the standing probbaly finished you off.
Babazaga EileenH
Posted
Have you experienced stress-induced flares? Or symptoms that dissipated if you reduced your stress level?
Doctors are very short on information.
EileenH Babazaga
Posted
Not that I would really identify no. I don't "do" stress!
Several people have commented they had a flare in symptoms after long drives - I htink you have to bear in mind that, however, relaxed you think you are when driving, you are not, not if you are driving safely that is. You are always on the watch for what other road users are doing and so there is a degree of tension there - to some extent similar to isometric exercise which you do by tightening muscles. And that alone can be enough to cause post-activity soreness if you have PMR - just as standing around a lot can also leave you sore and fatigued. Your muscles work hard keeping you upright and not moving about!
Babazaga greentea26
Posted
Having read a fair amount about Prednisone, I would be a little fearful of adjusting the dose without some supervision. Apparently going down too quickly is the most dangerous.
I, too, am experiencing what I think is a flare. That is, I seem to be getting headaches,pressure in my ears, eye pain, and shoulder pain more intensely than I did at the outset, plus my salivary glands have become strange. I'm on 10 mg---reducing from the original 40 and hoping to get to 9 in another week. 9 for a month; 8 for a month and so on. I'm waiting for a note from my rheumatologist to see how to treat the flare---if it is indeed a flare and not something else.
I am curious to see what professional advice you get about the proposed dose adjustment. Sometimes I wonder if the doctors we consult know as much as we hope they know!!
EileenH Babazaga
Posted
What do you mean your "salivary glands have gone strange"? Sjogren's syndrome can present similarly to PMR and if you have one autoimmune disorder, a second becomes more likely.