Symptoms with tapering

[gtate1914]

As I understand.... all symptoms should be absent before tapering. But also, as I understand, some people are never totally symptom free, although those symptoms are fairly mild and they taper successfully?

[DorsetLady PMRGCAuk volunteer]

The ideal scenario to be pain and symptom free, but unfortunately not all are - even at the very beginning when on higher dose than actually required on a daily basis .

It’s a matter of judgment and knowing your own body.

The only thing I would say is, if your symptoms increase during a period at one dose then you don’t reduce. Monitor yourself and get a blood test to see if markers are rising. Then you make the decision.

[gtate1914 in reply to DorsetLady]

My symptoms have remained pretty much the same for 12 days, light eye/head/temple/scalp ache lasting briefly, not constant or hard. I have a blood lab this morning. I expect it to show very low inflammation as it always does, about 0.4 CPR.

[DorsetLady PMRGCAuk volunteer in reply to gtate1914]

Well the bloods really just show the Pred is doing it’s job. If it’s not, and continues not to, then they will increase over time.

As we’re always saying on here - and I know it’s not the answer you want, but it’s true - we are all slightly different in our Pred journey. What’s normal for me is not normal for you - that’s why you have to learn YOUR normal. Many people do have symptoms as you describe, personally I didn’t.

However whatever pains you may or may not have, you just need to make sure they don’t get worse over time.

[gtate1914 in reply to DorsetLady]

Thanks DorsetLady, for replying. Yes, very frustrating. Maybe someone will reply that has been able to taper even though not totally symptom free?!

[piglette in reply to gtate1914]

I have never been symptom free. I thought most people weren’t. I found pain round my shoulders helped by hot showers and those things you stick in the microwave then put round your neck. Also stiff legs. I also got side effects from the steroids which are another matter altogether!

[gtate1914 in reply to piglette]

Do you have GCA also? I have never been symptom free so I don't know if that's my normal or if inflammation is not being controlled. So far this time day 12 and symptoms are pretty much same as day 1. Labs always low, tho I don't rely on that too much.

[piglette in reply to gtate1914]

No I don’t have GCA touch wood. My inflammation markers are always high and I don’t think I have ever been in the normal range. As the doctors haven’t a clue they just shrug and say that is normal for me.

[PMRpro Ambassador]

Whatever you achieve at the start is your guide - and you shouldn't find any increase in those symptoms as you taper. Most of them are things that are not directly PMR - but everyone is different and you have to work out how YOUR body works.

And really - most people are not entirely free from pain. But probably most of us don't think about it once we know what is our new normal.

[Lochy]

I’ve never been pain free and I only have PMR (or that’s what everyone still thinks!) 2.5 years into this and have suffered a couple of flares and the frustration of returning to starting dose after a year. Never achieved the same euphoric pain relief as I did that very first dose of prednisolone. Don’t think I’ve ever been back there! Have reduced to 9mg and currently on DSNS to 8. Bit stiff in morning but only major source of pain is my left knee. Had fluid drained and steroid injection which helped but now it’s gradually returning, after a month. Very frustrating ! Now we need to investigate what is causing just one joint to be such a problem. Apparently high white blood cell count in the fluid but not sure exactly what that means. Possibly OA but rheumy seems to think it’s related to PMR.

Reluctant to increase oral dose as everything else good. Unsure what now but seeing rheumy again on 1st November.

As PMRpro says you need to become familiar with your own aches and pains but I find it incredibly difficult to separate them all. The Pred we take eliminates virtually everything and it’s only when you get to lower doses new aches appear and they just could all be age related, old injuries aggravated by PMR - I really don’t know!