good morning - advice please if you may. Getting frustrated - for months since original diagnosis in September 2023 had been congratulating myself of successfully tapering down to 4 mg a couple of months ago with very few hiccups. Then the familiar thigh aches started so I upped to 7 for a week which helped and dropped back to 5. Niggles began again so two weeks ago I put myself reluctantly to 10 for 8 days and have now dropped back to 6. Discomfort is totally manageable but is there. My activity levels are reasonably high but totally consistent - golf, gardening - dog walking etc - just the same as when I started this annoying journey. I don’t want to keep yo-yoing and just wondering why when I seemed to be doing well I now seem to be faltering. Any advice on how to handle things would be much appreciated. Slowing down is probably not an option!! Aye - There’s the rub maybe ? Enjoy the weather it’s still very chilly here in the south west and breezy to say the least!
PMR one step forward three back!: good morning... - PMRGCAuk
PMR one step forward three back!
While here in Scotland it is warmer than much of the UK at present! Out of the breeze it is really warm. However - for a wedding in Bridlington on Saturday it is to be the coolest day of the week in the north before improving again next week. Typical!!!
Adrenal insufficiency can also cause muscular aches so it may not JUST be the PMR making itself felt. And you have a choice - slow down or take more pred to accommodate the activity.
Slowing down is probably not an option!!
In that case, to continue with the Hamlet quotes.. you will be “hoist by your own petard”
The only way -
a. Slow down on activities and slow down taper.
Thank you! Thought that might be the case. Will have to be the taper slow I think!
But that’s not the magic bullet just on its own…. wish it were! You need to do your bit as well..
Hi, reading your post it seems like even at 10mg you are still having pain and discomfort. Much as you might not wish it, I think a) you have got to accept that your present level of activity is too much and b) probably stay at 10mg for a few weeks until everything has calmed down again and then start a slow taper. From 10mg I worked on 0,5mg every five weeks (DL taper). Even that though is not set in stone, if it doesn't feel right after five weeks then continue it for an extra week or so and then try again.
Thank you - I heed all the advice and was as I expected! Just so disappointing when I got to 4mg having been fine at 5 - will try to be kinder to my body - my mind wants me to be as active as I always have been. Will listen more to my body!
It can be tough, it really can. I have made mistakes and had to learn from them. PMR and Pred can be hard taskmasters. Listen to those who know because they have been where we are. I did not listen, thought I knew best, and came a cropper. Getting it together a bit better now. All the best.
congrats on getting so low on PRED sp quickly, I am lagging, but with the 'yo-yoing" of having to up the dose during a flare I have learnt that taking a rest, even when you didnt think you needed one, helps that period which for me means I am not even really sure when the flare has really ended. I read somewhere a maxim of 'must read 30 mins a day' and altho I dont go for rules, decided it was a good one in my case. I actually love reading and buying books! but am often too busy to read them but am forcing myself to catch up and not getting and think I am not getting so hit by the tiredness and aching
Just remember that when you get below 7mg you need to go much slower and much smaller drops in dosage. Your adrenals take a lot of time to recover and below 7 their needs are no longer being met. And don't be in a rush. I'm sure most of us have been at this for years, not months. I was diagnosed in June of 2020 and just now getting down to 1mg. Had a hiccup a few weeks ago and thanks to PMRpro went back to 5mg for a week then dropped back down to 1.5. It worked.
I agree, I am now on 6.75 and stable. I am planning to stay with this dose for about 4 weeks and then drop 0.25 every 4 weeks if all is well. I am in no hurry as my doctor has removed all the time pressure for me for which I am grateful. It helps.
So, annoying harshly stated facts:
1. You are only (only?! I hear you cry) 18 months in.
2. You are unwilling to slow down and want to keep up with all exercise types.
3. You are in the zone that requires the adrenal axis to put in some work now.
4. You know you don’t want to yo-yo but did it anyway a second time.
Regards 1 - Your lowest level right now is somewhere under 10mg which isn’t bad. You need to find that spot more accurately instead of whizzing past it in one direction or another.
2 - I found that under 10mg was when my body became much more prone to DOMS having felt ok up to then and I wasn’t doing half what you were doing and was in my 50’s not 70’s. Muscles and ligaments are affected by PMR & Pred. Plain old muscle musculoskeletal protest could be muddying the water here.
3 - Your low doses plus exercise may be too much for your current adrenal capability. This can cause aches which also muddy the water with general aches.
4 - Go to where you were comfortable and reduce 0.5mg and longer drops and rest your body more. Hopefully then all the potential side issues should dissipate and you can see the wood for the trees. As always it’s a choice between what one’s head wants and what the body can do.
Hi SnazzyD and thank you- I will see how I go on 7 for 3 more weeks (having originally been ok at 5 in January!) and then review - slowly.
Appreciate your reply - thank you
Hi Sungolfer
Sounds like my story. My consultant advised me to 'keep going whatever' when I told him of my exercise regime. He also said keep going to my physio/health coach. I've had on hell of a struggle to get down and stay on 8 mg but i feel that I am now there. The consultant advised me to take painkillers when things got a bit bad and these help.
Personally I would not slow down. However, one thing that this site had taught me is that we are all different.
Good luck and just keep going, you will get there one day.
Thank you - it’s so tricky to balance doing what you used to do and want to keep doing - and try to be sensible. But I do know a sedentary lifestyle does not suit me!! Thank you
But I do know a sedentary lifestyle does not suit me!!
We have never said it needs to be completely sedentary -just that you need to moderate what you do.. and you can do that by pacing your activities.
Nothing enforced about sedentary - but PACING is essential to get to a lower dose of pred. And you have to limit it to what YOU can manage without detriment ...
This is so true. I was taught pacing at the chronic illness clinic 10 years ago but never quite got the hang of it. Since last September I have had to but it hasn't been easy. Now my family understand and are supportive I am finding it easier to say when I could do with some help, even if it's just a hug 🫂
It seems to me that you are lacking one very effective remedy. My wife! She who must be obeyed!
Sungolfer, I know what you are going through - been there. I've been down to 8mg once and due to flares back to 10mg 3 times all using the DLSlowTaper. I've realised that I was just doing too much so this time I'm gaping down from 10 but cutting down my swimming and walking by 50% and see what transpires. It's a real challenge step down but don't really see any other option. Good luck
Thank you and Im sorry you are cutting down on the excercise and activities that you enjoy - its so unfair to be punished for staying active!!! there is a happy medium Im sure - but finding it .....?
its so unfair to be punished for staying active..
At 78 years old you should know that life very often is unfair … and no one has said you shouldn’t stay active.. just not SO active as previously. Remedy is in your hands.
Not punishment - but a natural response to overdoing it when you are ILL. If you had flu would you expect to carry on? There are many far worse chronic illnesses than PMR, it at least very often goes into remission and doesn't kill. Even advancing age will limit you eventually whether you like it or not just that creeps up while PMR often strikes overnight.
what is the other option ?
To be blunt if I may, one word - acceptance. A word I still battle with daily due to my upbringing, but I am getting better.
Interesting. I have been in a similar situation since November. On 6mg for the last year and unable to drop. I've had several infections since Nov, and 6 mg just wasn't enough, then I had flu and the whole thing went off the scale. I was in so much pain. To try stopping me from me yoyoing, doc put back on 15 mg for 1 week, 10 mg for 1 week, then 9, then 8 and now on 7 mg this week. So far so good. He told me not to drop back to 6 mg until I was sure that I am OK on 7 mg, so I may stay here for another week, at least, and see how I am getting on then. So far, so good. My doc came up with that after looking back at my records, so my thoughts are that if you are having trouble stabilising your dose on your own, it might be worth discussing with your doc.
Thank you for that detailed reply. I do have a really good gp who has been happy for me to self medicate. But I might call him next week to see the best way to stabilise- good luck to you too!
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