Not sure if I am happy...: Initially I was pleased... - PMRGCAuk

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Not sure if I am happy...

HamishPMR profile image
19 Replies

Initially I was pleased that my dose of prednisolone was down to 3mg daily after 5 years. However I am feeling that the prednisolone has been masking arthritic problems in my neck and my knees. I take ibuprofen for costochondritis which also seems to help my neck but not my knees. So, should I think that only 3mg is not to bad or should I continue my tapering which has been 0.5mg reduction every 4 weeks for the last six months? I'm 80 yr old. Hamish, Edinburgh.

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HamishPMR
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19 Replies
SheffieldJane profile image
SheffieldJane

I would be pretty pleased to be at a relatively safe dose and if pausing now helps, I would.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Unfortunately once you reach lower dose arthritic pains do resurface, but if ibruprofen doesn’t help your knees then perhaps you have to consider that may be PMR as well…

Have you had knees X-rayed recently to see if OA has deteriorated significantly. Or your inflammatory markers checked to see if PMR is more active.

In the meantime I wouldn’t be considering reducing any lower until you have some answers.

You could try Flexiseq for osteoarthritis-not cheap- but if it works worth it -

flexiseq.com

HamishPMR profile image
HamishPMR in reply to DorsetLady

Thank you Dorset Lady for your, as always, helpful advice. You would think as a retired pharmacist I would be more savy. Mind you when I qualified Tinct Belladonna was a big thing. Ho ho. Hamish.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HamishPMR

🤣😂..couldn’t possibly comment… just hope you can find get relief for your pain -whatever is causing it.

SnazzyD profile image
SnazzyD

Unfortunately as we reduce, other niggles show themselves and arthritis holidays come to an end. How are you feeling otherwise?

HamishPMR profile image
HamishPMR in reply to SnazzyD

thank you yes fine, gym Monday thru Friday Holidays in the sun 4 months of the year should not really complain

SnazzyD profile image
SnazzyD in reply to HamishPMR

Do you mean gym every day Mon - Fri? It might be you need to reduce your routine and see if that has become a bit too much. Also, make sure your form hasn’t slipped and you’re not aggravating your bits and pieces. So perhaps get a knowledgeable person to spot you to make sure you haven’t developed some subtle bad habits. We can’t get away with it like we did!

HamishPMR profile image
HamishPMR in reply to SnazzyD

Thank you for reply. The gym is no big deal. 25 minutes cardio, 15 on mat for core and 10 weight machines being very very careful. A couple of years ago we did gym and two one hour walks. Now 2 hrs walking is down to two three quarter hour strolls. PS all gym stuff weight bearing.

SnazzyD profile image
SnazzyD in reply to HamishPMR

wow! That’s great. Just make sure your technique is squeaky clean if your joints and neck are complaining.

Jackoh profile image
Jackoh

Personally I would be ecstatic if I’d reached those levels. I am seven years and counting. Xx

PMRnewbie2017 profile image
PMRnewbie2017

I would slow the rate of your reduction from monthly to 6-8 weeks and keep the new dose to 0.5 or 0.25mg lower than the previous. Regarding Ibuprofen, what dose are you taking? I followed PMRPro's theory of a flooding dose once daily and it works for my myofascial pain. Last night I tried only 400mg Ibu plus 1g Paracetamol and that has been effective too.

At 80 yrs of age I probably wouldn't be hell-bent on getting off Pred all together, but you'd need to check with your Drs if you were planning on staying on Pred for the rest of your days, hence my suggestion to go really really slow - so you can tell them you're still reducing!!

FC ret'd MRPharmS

PMRpro profile image
PMRproAmbassador in reply to PMRnewbie2017

I've tried the "lower I plus P" and in general it isn't any better than 400mg ibuorofen on its own which works but not that well. This morning it was 1g soluble paracetamol plus 600mg ibuprofen and that that is good already. Had never some across 600mg ibuprofen before - better than 400!!!!

HamishPMR profile image
HamishPMR in reply to PMRnewbie2017

Thanks, Hamish retired MPS as pharmacists used to have after our name.

PMRpro profile image
PMRproAmbassador

All been said - it is an unpleasant discovery to realise the pred helped OA pain too. I have always said that if I were to get to 3mg and found OA raised its head and ordinary painkillers didn't work as well as 4mg pred I would claim PMR pain to stick at 4mg! I now have low back pain that isn't PMR but it was excruciating at above 10mg pred too so that doesn't help, It does seem to be improving - and 1mg soluble paracetamol plus 600mg ibuprofen a day (taken at the same time, early morning) seems to be doing a good job!

Interestingly - at 4am this morning I had no back pain, when I next woke at 7.45 it was decidedly there on standing up ...

Longtimer profile image
Longtimer in reply to PMRpro

I had Endocrinology ring me yesterday, (2 hours late!) I have been housebound for a few weeks, so weak, heavy legs, dizzy, can't sleep.....strangely enough, noise sensitive and very jumpy. OA in lower back is worse too. I assumed it was because I am at 4.5mg and have been for a while......she thinks it's possibly adrenals.....I am to have a cortisol test at the surgery, then longer one at the hospital. She told me not to lower any further......my last cortisol reading in September gone....was 215, which she described as suboptimal.....afraid I had to look that one up!........Think it would help if there was a pattern to our problems......

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Longtimer

Think it would help if there was a pattern to our problems.…

That’s a big wish 😊

Longtimer profile image
Longtimer in reply to DorsetLady

Yes, an impossible one too...

PMRpro profile image
PMRproAmbassador in reply to Longtimer

About time too - what brought about this change of heart on the part of the endos?

Longtimer profile image
Longtimer in reply to PMRpro

Nothing....it was a routine call after 6 months!.....which was actually 9 months.....since having the shorter cortisol test in September......with the reading of 215....when she rang I had all my questions and symptoms written down in case she t ried to hurry me because of running late......

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