I’m aware that this is very early in a much longer journey. I’ve been on 15mg of Pred for 3 weeks and it has been like a wonder drug to me!
I am normally a very active person but for the past 4 weeks or so have done limited exercise but have worked out what my limit is every day and am trying to manage within this. However, this is not my normal active lifestyle which I obviously want to get back to one day.
Looking ahead I’m wondering how I will get there through increased exercise and tapering. If I slowly start tapering from 15mg I don’t see how I can increase any activity without flare ups because the doseage isn’t high enough to address flare ups and stay on top of my PMR.
Or should I stay at 15mg (or possibly increase slightly), try to increase exercise and work with that so that eventually increased exercise and tapering go hand in hand (I know there’ll be hiccups).
Just pondering my options really so that I feel empowered and have some plan of action when I go for my review with my GP.
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Jancy2
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The 15mg is a basic starting dose - and hoped to be considerably more than you will require ongoing to manage the daily new dose of inflammatory substances shed each morning at 4-4,30am, The initial higher dose is to clear out the accumulated inflammation so that only the daily dose of inflammation needs to be combatted in the longer term and obviously that needs a lot less pred so you get to a lower dose.
No, don't be tempted to stay at 15mg to be able to exercise - that has other downsides as pred isn't good for muscles or other soft tissues and in the long term will increase the risk of injury, Some people are able to keep exercising all through though almost always at a lower intensity than pre-PMR. Others even started in a wheelchair but get back to where they were before - Skinnyjonny being a stellar example:
But trying to force yourself to do exercise can lead to severe effects and even flares that are very difficult to recover from. It is much easier to develop DOMS (delayed onset muscle soreness) when you have PMR and even when on pred, and it often takes much longer to recover from it as the muscles are less able to heal the microtears that cause it and which are the foundation of the training effect.
PMR is life changing and sadly we have to accept we have a chronic illness. The mantra with PMR is rest, rest, rest. Steroids help the pain, they do nothing for the disease. If you try to overdo things PMR will always win. On the other hand it is good to keep active, but also just don’t overdo it or PMR will tell you.
Hello Jancy2🤗Good advice given in the replies.
I felt the same way and wanted to bounce back to my past normality.
I've set myself walking goals and try and do a little walk daily. It's usually ten minutes- sometimes a little longer and is quite slow. In time I plan to walk faster or walk a little further.
I wear my garmin and it's encouraging to see how many steps I manage throughout the day.
Set sensible goals and don't be hard on yourself. Best to build up slowly.
Very best wishes and hope you feel much better soon🌼
Morning Jancy2, welcome to the forum and the advice already given. When you have time there is plenty of info about PMR in the FAQ'S and it's well worth a peruse. There is a lot to take in and don't hesitate to ask questions. No questions are silly and there will always be people hear to give answers. Take care and remember this is a disease that cannot be rushed and it will only disappear when it is ready.
My GP told me to exercise daily, bike, play golf, stretch, run, lift weights, the lot. Exercise enhances blood flow to muscles, keeps them toned and healthy and as long as you don’t over do it, should be good for you (and the mind as well!)
In that case, I hope one day he gets PMR and learns the reality of barely being able to get out of bed and put one foot in front of the other!!! Even on pred. Golf in particular can cause a lot of problems because of the shoulder involvement and weights put you at risk of muscle damage,
In any case it’s horses for courses, what works for some does not work for others but there is no fixed rule and the GP’s recommendation is to get out there and do as much as you can.
You are very lucky you can, most people with PMR told to do that would end up in bed for weeks. And when a GP tells them to do something that is too much for them they are also the type to accuse the patient of not trying. Which is appalling and unacceptable.
Hi, thanks for your response. I have been doing all those activities for years inc. golf. Have you been doing them since diagnosis and how have you been getting on? I was diagnosed similar time & have reduced activity to walking and some gym work; I do something specific every day to keep going.
Thanks for sharing. I’ve always been very active and have simply continued to do my regular level of activities. The bit I have increased is the stretching and joint mobility and perhaps weight lifting as those are the muscles and joints that had been affected when I was diagnosed.
I had a very similar conversation with my rheumatologist last week but I'm 3 years into this now and at 3.5mg of pred.
I was previously a runner and pretty much halted all running as it made things worse. Since having PMR I have focused on walking and staying mobile and have kept that going to varying degrees throughout but it's only been in the last 5 months I've been able to get back to the walking group. We do 5k in 50-60 minutes so not hanging around and it feels great to get back to this. (We all have different start points and I am 49 so please don't compare)
What I'm trying to say is that for me, gentle exercise was the way to go and focus on reducing pred and remaining well. I had the dreaded fatigue around 5-7mg but once past that, could really pick up the exercise. I feel llas though tapering has slowed because of the increased exercise but this isn't as much of an issue at 3.5mg and my rheumy agrees. I'm not sure if her opinion would have been the same if I was on a higher dose.
Hi, I’ve been in prednisolone exactly 6 months. Started at 15mg, dropped to 12.5 then 10 then been doing either 1 mg or 0.5mg, got a bit stuck at 8mg but am now down to 7mg. The first 6 wks I did a strict anti inflammatory diet and gentle walking. I also did 2 Pt sessions a week in the gym for general stretching/mobility. Two months after starting Pred I returned to golf. I’m now also up to 4-5 miles hill walking, swimming and pickleball. However, I do listen to my body and do rest when needed. Still a way to go to get back to where I was previously.
I have insomnia from the Pred which, for me, is the worst thing. I’ve been very lucky with my GP & a rheumatology consultant (once he realised I wasn’t going at his pace!). I’ve kept notes all the way along so far so that I can identify any patterns or answer any questions by medics.
I think I’ve been very lucky so far compared to the tales of others. Hope you continue to progress.
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