Tapering

[Studland]

Started on 15 mg 17 months ago, and, on guidance of my GP, am now down to 2mg. Currently some tolerable pain in left thigh muscle in the first 2 hours of the day, and some niggling around the neck. My legs sometimes feel as though they do not belong to me .Is this all normal? I am assuming that I will remain on 2mg for another month or two, before dropping to one.

norm

[PMRpro Ambassador]

Where did you last have none of these pains? You aren't really reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did - that was your guide.

[Studland in reply to PMRpro]

Many thanks for the advice. I really did think I was heading for zero pred in a few months.My condition varies from day to day and across the day, but the pain levels are now never more than 2 or 3. Over the 17 months on pred, the reduction in pain has been steady rather than dramatic. The minor stumbling is a bit worrying. I have been a keen walker for 30 years, and have recently got back to doing a gentle 8 miles once a week with a group. My legs are weaker than before the PMR came on. I am 83.

[PMRpro Ambassador in reply to Studland]

The reduction in pain is at the start with the right dose of pred for long enough - and then you reduce at a pace that maintains that level of pain relief.

[PMRnewbie2017 in reply to Studland]

You are 83 and have had a serious systemic illness! Sadly the pred does affect our muscle strength you will now be less fit and strong because of being forced to take it easy. You could increase your dietary intake of oily fish as omega 3 helps inflammation and is also good for brain tissue. Easy does it, you sound determined so you will get there. All the best.

[OutdoorsyGal in reply to PMRnewbie2017]

You’re my hero! I hope I’m doing “gentle eight milers” when I’m 83!

[DorsetLady PMRGCAuk volunteer]

Hi

Very quick reduction in comparison to most - but you may be one of the lucky ones. However as PMRpro implies you may well have gone below the level you actually need right now.

So certainly no more reductions for the time being, and if you feel the symptoms are getting worse then please take extra to get rid of them. You don’t want to reverse all the good work so far! At 17 months your PMR is likely to have some time to run - despite what GP may think.