Impossible to answer?: Hi, I realise this is like... - PMRGCAuk

PMRGCAuk

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Impossible to answer?

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4 years ago•8 Replies

Hi, I realise this is like asking how long is a piece of string but here goes -

how much pain do you accept you can live with before you try to taper?

Im generally ok about 4/5 hours after taking the Pred, (trying to get down from 15 to 14.5 v slowly) and then about 80/90% pain free for the next 15-20 hours.

People on very low doses - do you still suffer pains in the morning before the meds kick in or are you all pain free and just tapering happily.

How do you determine if the pains are the illness or old age?!!

8 Replies

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SnazzyD4 years ago

Hello there, I’m sure people can help but could you flesh your query out a bit? So, for example, how long have you been on Pred, did you start on 15mg, have you got PMR or GCA or both? Also, what were your pains before diagnosis and what kind of pain do you have now? How old are you and which country are you in? Also, what do you do in the day and are you comfy at night? What were you told by your doctor? Then sit tight and answers will come.

bula3434• in reply toSnazzyD4 years ago

Hi Ihad to put my prednisalone up to 15% Iwas on 13%.with my Rheumatologist advice,I've had pmgr for 4 years,Iwas trying to reduce 5% amonth but I had flare up,I couldn't sleep at night for the aching in my thighs and hips I lasted out nearly a month but had to get some help, within afew days I felt more comfortable and of course not so depressed, I'm hoping to start reducing again in afew weeks time don't let yourself get too low we are all different, butwe all need some help don't be worried about asking for some,hope this helps you.

PMRproAmbassador• in reply tobula34344 years ago

I assume you mean mg (milligrams) not %? No-one can reduce 5mg at those sort of doses - maybe above 20mg, but even then it is hard. Noreduction step should be more than 10% of the current dose, that is 1.5mg maximum at 15mg/day.

DorsetLadyPMRGCAuk volunteer4 years ago

Plus to SnazzyD queries, where you pain-free on the initial dose?

Then we might be able to gauge the length of string 😉

PMRproAmbassador4 years ago

Very few people are 100% symptom/pain-free, The level of relief you achieve with the starting dose is a guide to what you are looking for - you shouldn't feel worse at the end of a taper step than you did at the start. At the level you are at, you shouldn't feel much returning - unless you are trying to do too much because you feel so much better and that is neither a good idea or advisable! If pain returns during or at the end of a taper step, it may be steroid withdrawal discomfort which usually appears immediately you change the dose, responds to paracetamol and improves over the following week or two. If returning pain takes a few days or more and then steadily gets worse it is more likely to be that the pred dose is now too low to control the daily dollop of inflammation.

However, the morning pain is a normal event in PMR: the inflammatory substances are shed in the body every morning at about 4-4.30am and then create the inflammation which underlies the symptoms until your next dose of pred is in the bloodstream and taking effect. The sooner you take the pred after 4am, the sooner it can work, and the less it has to do. The ideal time to take pred to minimise morning symptoms is 2-3am so the pred is at its peak in the body by 4am (prednisone takes a couple of hours, prednisolone a bit less). The inflammation never gets started so the pred is more effective.

The antiinflammatory effect of pred lasts 12-36 hours, depending on the person, so for some a single daily dose gives good pain relief for 24 hours and more - for some splitting the dose may help there so the mornings are better but that isn't advisable until you have got more used to PMR and pred.

RoadTrip• in reply toPMRpro4 years ago

Sorry PMRpro just quick question (sorry following para. bit longer than hoped) my PMR was blasted by GCA levels of PRED so don’t really have a base line to work to.

Looking back at my rather bad diary notes, any mention of shoulder/leg stiffness/aches started at 12.5mg and lower, but levels of discomfort were well below 1 on my 1-10 pain/ discomfort scale. I have just gone back to 14mg from 9mg as unable to get in/out of bed without much pain in the mornings. Much better on 14mg but still slight stiffness in mornings, which I didn’t have at 15mg or starting on 12.5 mg previously. Confused as to wether this is normal and ok to reduce back to 10mg after 7-10 days of 14mg or not?

PMRproAmbassador• in reply toRoadTrip4 years ago

Obviously 9mg was a step too far - but it can take several days to get it cleared out and sometimes it is harder than it was first time round. I think you have to wait and see since you don't have a baseline. You obviously were absolutely in the edge at 10mg so don't rush and don't push it too hard.

RoadTrip• in reply toPMRpro4 years ago

Many thanks for your quick response. Was getting a bit confused, despite extensive reading on the site, many thanks for pointing me in the right direction.👍👍