it’s now been 8 days since return from holiday. I’m marginally better but after a shower and breakfast feel fatigued and not well. I did go out for coffee today with husband for an hour and now have aches in arms and legs . I have neck pain / stiffness at times. Had a nap. I’m still on 15 mg prednisolone which was what I was originally prescribed and had a great result with. I have a telephone appointment with GP on Thursday evening to discuss my doseage , this is at their request. I’ve written down the history of my increasing from 10 to 12.5 to 15 mg and the symptoms experienced. Just wondering if there’s any thoughts you have on this. I thought I’d have felt much better by now. I don’t seem to be able to do anything without feeling ill. Thanks for any advice
update on symptoms after holiday: it’s now been... - PMRGCAuk
update on symptoms after holiday
How sure are you that this is the PMR that is causing you to feel ill? Reading your previous posts it sounds to me as if it could be something else. And since it started well before the holiday, it sounds as if the effort ot the holiday has added to whatever it is.
There is always the possibility that your PMR is not just simple PMR but due to LVV (large vessel vasculitis) or even is a polymyalgic presentation of another illness.
I wonder if it’s a combination of a flare combined with holiday stress. A couple of weeks before the hols I reduced to 10mg from 12.5. I did develop some neck stiffness but thought I could deal with it as it wasn’t too bad. Symptoms increased over the next two days so I went up to 12.5 . I had no improvement for 3 days so increased to 15 as the holiday was in 4 days time.
I had previously failed at 10mg and had to increase to 12.5mg about a month earlier. I realise now, any increase in symptoms means I should go straight back up to my previous dose
I think part of the problem stems from your starting on 15mg - and it simply wasn't high enough to get the whole thing cleaned up. You can't taper until all the accumulated inflammation has been cleared out and 15mg is the bottom end of the range for starting doses. Doctors are so scared of pred they err on the side of caution and for a lot of patients it leads to trouble in the longer term. I have to say, I fear you may need to go back to the beginning but start with 20mg, Once you flare like this, it becomes harder and harder to get things in hand again.
Thanks. I’ll discuss this with the GP on Thursday. I’ve been so disappointed as I had been managing ok at 12.5. I was able to do some things of my old life without repercussions. I had hoped going back to 15 would have given me a good result as it did first time. It was a dramatic improvement initially . I have read on this site though that flares make it harder each time to bring under control. Thanks for your help.
Which sounds actually as if the flare protocol would dictate a temporary increase to 17.5 before reducing again.
Thanks , I’ve got something to discuss with GP now. Hope they’re amenable
Would I then reduce to 12.5 mg after 7-14 days as that dose worked for me or to 15mg as I’ve been in that dose for nearly a month. Thanks
Not sure 12,5mg straight away is a good idea. Really very much depends on how you are at 17,5 - how good are you at 15mg at the moment?
Not great. Aching arms and legs at times, some stiffness in neck. Easily fatigued and feel ill if I do anything.
Remember the PMR mantra. REST, REST, REST.
From reading this thread my impression is your doses are yo-yoing a bit. Up and down by 2.5mg and more. I agree that the initial 15mg dose probably wasn't high enough. I wonder if you were on it for long enough too? If you can pesuade your GP to put the dose up to 17.5mg or more you really need to stay there for at least 4 weeks, probably even 6. Then taper using DLs scheme. You may be sensitive to large drops in Pred dose or it may be that the inflammation was never fully dealt with. Reduce by no more than 10% and stop tapering if you have any symptoms.Perhaps there is something else going on, but untreated PMR inflammation can also make you feel unwell, nauseous, narky, and generally rubbish. Let us know how you get on.
Thanks. That’s exactly how I feel. I will ask the GP if I can increase the dose. I was ok til I dropped to 10mg so going to take it much more slowly
Just FYI…I started on 15mg on about 10 December 4 years ago. It helped immediately, thus confirming the diagnosis, really. I was worried as off to the USA for 3 weeks on 6 January, & all the busy-ness of Christmas, too! Discussed with my Dr, & went up to 17mg. It worked!! I ‘strode’ through Christnas & ‘bounced through the USA’…did all the driving, had a lot of fun. Then started tapering on return. The early tapering went very well, but I think it was because I’d been well controlled at the beginning. No two people are the same, but I see some parallels here! But PMR Pro is the Pro…& it sounds as if you may have something else going on, & not just PMR!! Good luck, S x
There are some parallels . I’m hoping it’s just a combination of a flare not controlled and then going on holiday. I’ll learn lessons from this for future holidays. Thanks
It’s easy to over work before hols, then be tired before you go! I pack about 4 days before we go to alleviate that & try to have last day before we go with nothing to do (there’s always stuff but makes the travel day a bit easier)!
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