Tapering Strategy

[craighead72]

Although I presented with all the usual symptoms of PMR in March my bloods did not fall in the indicative range. However my GP prescribed prednisolone in order to “treat my symptoms”. I started on 20mg per day for three weeks then moved down to 15mg until July and then down to 14mg during August and September all under the guidance of my GP. During that time my symptoms have lessened and then disappeared. I reduced the dosage to 13mg from only 2 days ago and have developed pain in my pelvic and hip areas (which I did not have previously) but have no other symptoms. Is that likely to be from the small dose reduction 2days ago or a side effect of taking prednisolone for over 6 months,? I have felt for several weeks that my leg muscles are weaker than previously. Do I try increasing the dosage for 5 days to see if the pain subsides and then resume at 13mg?

[Davidj16]

my rheumatologist has had me on hydroxylcloroquine ( 400 mg daily ) while tapering down prednisone. The only consistent pain that remains is a slight discomfort in my back thigh muscles when I bend over, other than that I’m pain free. I’m confident this is just the PMR but not bad enough to stop me tapering down 1 mg pr. Month

[piglette]

You seem to be doing well and the steroids seem to be working their magic. If you have just reduced and you are getting a few aches and pains it might just be steroid withdrawal which should go away in a day or two. You can take something like paracetamol to help. If it is a flare it tends to take a week or two after reducing and does not occur so quickly.

Around 20% of people do not have raised inflammation markers for some unknown reason. This seems to confuse some doctors though, as it makes diagnosis of PMR more difficult.

[DorsetLady PMRGCAuk volunteer]

This early after reducing sounds like steroid withdrawal…this link gives more info - so maybe give another 24hours to see -before increasing -

healthunlocked.com/pmrgcauk...

But you must remember you PMR has not “gone” all the Pred is doing is keeping the inflammation under control - if you haven’t read this might be worth looking at -

healthunlocked.com/pmrgcauk...

[craighead72 in reply to DorsetLady]

Thank you. I have read and understand the information and guidance in the articles you mention. I just did not think a 1mg reduction would have any adverse effect in a couple of days but then I realise that I have been probably stupidly over ambitious because I had no PMR symptoms for a good few weeks and did some DIY jobs around the house and garden and played a bit of golf etc etc ... Could that be a factor? The pain I have around my pelvic girdle is a new symptom which came on during the golf (all the rest previously have related to my shoulders and upper back and general feeling of fatigue). Anyway I think I will increase my dosage by 5mg for a few days to see if that helps and then start a slow taper again.

[DorsetLady PMRGCAuk volunteer in reply to craighead72]

“..over ambitious because I had no PMR symptoms for a good few weeks and did some DIY jobs around the house and garden and played a bit of golf etc etc ... Could that be a factor? “

Most definitely! Work and play in moderation -doesn’t mean you can’t do it, but you need to learn to pace yourself-otherwise the PMR bites back!

We’ve all done it my friend, feeling good and think/hope you’re back to normal -you’re not unfortunately. My downfall was usually gardening -too much all at once.

So divi up your jobs into smaller chunks -have a break, a cuppa, read the paper , do the crossword- anything to give the muscles a rest.

As for golf, is it possible to play 9 holes rather than 18 for a while… if not then definitely rest the day before and day after. You might think that’s being a wimp, but it’s not…. you need to care for muscles -you will get back to normal but don’t try and rush it..

[craighead72 in reply to DorsetLady]

Thank you. I thought you would say that 😄 Good to have the reassurance of those comments.

[DorsetLady PMRGCAuk volunteer in reply to craighead72]

Nothing if not predictable-well in giving advice on here….can’t say same for me personally 😊

[PMRpro Ambassador]

Nothing for me to add to DL's analysis - and the first question I would have asked was "been doing anything extra recently"! You had. It's the etc etc that is so dangerous - it is all too easy to overdo things.

Some people can reduce 1mg at a time, especially to start with, but not all and even 1/2mg can be the difference between comfort and not. The fact you mention the symptoms slowly lessening suggests to me you probably don't have much of a buffer or reserve so a bit extra inflammation will be quite noticeable.

[craighead72 in reply to PMRpro]

Thank you. Another lesson to be learned. Duly noted.

[Nextoneplease]

Hi craighead 😊

Nothing much I can add really to the great advice already given. Just wanted to say though, that tapering down can be a bit of an art form! And I too found that I only too easily did just a bit too much once I felt better - only for PMR to bite back.

Also you mention a lessening of muscle strength, which I also have. This can be caused by PMR or prednisolone directly, or by the fact that we simply have to take things easier than we used to….again it’s a balancing act between getting a bit of exercise and not overdoing it.

All the best to you, sounds like you’re doing great 😊

[MiloCollie]

Don’t be fooled by the feeling of strength and greatness!I too have learned that the hard way. Slow and steady. Pace jobs and spread them out. Keep going you’re doing well! ❤️