Tapering but should I go further?

[tempusfugi]

May I say how very useful I have found the questions and answers/advice I have found on this site...quite invaluable.

I wonder if I could receive advice on my particular problems. Briefly, I was diagnosed with PMR in March this year. 15 mg of Prednisolone didn't touch the pain so surgery upped dosage to 25 mg. Since then, I reduced in 5 mg jumps, each month, until reaching 10mg. Following that I reduced to 9mg (approx over a period of 6 weeks) and now I am tapering to 8mg. The week after next I will be on 8 mg full-time, if all goes according to plan, having taken some 5 weeks to get from 9 to 8 mg.

Sorry, that wasn't as brief as I expected! My intention is to stay on 8 mg for another month which may sound ultra cautious BUT I am concerned by a couple things, apart from CRP still illustrating inflamation. I am still a bit stiff in the mornings and I continue to feel aches and pains during the day but absolutely NOTHING like the grinding original PMR pain. What does concern me is that the backs of both my knees are v painful and, I think, slightly swollen. I can't bend them very far without a shout of pain. I can't seem to find anything much about this particular condition. Do you think it could be bursitis? - I don't believe it's a Bakers Cyst in each knee, by the way and neither did the physio I saw last month (private). She thought it was connected to PMR. I am due to see an NHS physio shortly.

I wonder if I should be trying to go down to 7 mg or do I wait to try to get knee problems explained? I have another question but think I will send a separate post on that. This is already too long! Many thanks in advance.

[jinasc]

Just a thought do you take Adcal?

If so ask for a full spectrum blood test (this means all minerals will be tested).

I ran into Pseudo Gout in my knee, caused by too much calcium. So Rheumy drained it and took me off Adcal and I then just took Vit D, which I still take everyday.

[tempusfugi in reply to jinasc]

Thanks jinasc. I was put on Adcal at first, following diagnosis. It's recently changed to Calci-D (1000 mg/daily). I somehow don't feel it's Gout related but I have got an appt at my medical centre coming up, so will check it up with them.

[jinasc in reply to tempusfugi]

This will make you smile, I did not think it was gout related so just put up with it, until my Rheumy appt (and he was one of the brilliant ones) and I limped in - bingo.

[tempusfugi in reply to jinasc]

Will let you know what happens, as and when.

[DorsetLady PMRGCAuk volunteer]

“My intention is to stay on 8 mg for another month which may sound ultra cautious..”

That’s not ultra cautious, it’s very sensible….and in line with guidelines -which not everyone can achieve by the way!

Until your knee is sorted -and jinasc has advised on that . I personally wouldn’t be in any rush to reduce

You are into the “adrenal glands needing to start working again” doses of Pred, which sometimes adds in other issues, so maybe consider smaller reduction in the months to come….0.5mg a time rather than 1mg.

Please keep us updated on knee!

[tempusfugi in reply to DorsetLady]

Thanks, DorsetLady, for your thoughts, which echo mine about being in no rush to reduce and, when I do, I shall do so at 0.5mg level. Looking back, I reckon my PMR journey started about this time last year, although the pain seemed to take time to build up, hence no diagnosis for some months. By the way, both knees are affected.

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

sorry..knees..

as both, could well be PMR related - if not for swelling. Which as you say does sound like Baker’s Cyst - but both? Very unfortunate if so, but not unknown, however a secondary BC can be caused by arthritis - so maybe that could be investigated. You are at the level of Pred where many find arthritis pains, previously masked by high dose do appear/reappear.

[PMRpro Ambassador]

Are these symptoms you had with the PMR at the start? Is the CRP any lower than it was then? Is it stable?

To be at 8mg from 25mg in March is really impressive - I don't think remaining for a month at your doses under 10mg is cautious at all, it strikes me as eminently sensible! But then - my belief is the lower the slower and it isn't slow if it works.

[tempusfugi in reply to PMRpro]

Thanks for your comments, PMRpro. I do not remember the pain (or swelling) behind my knees at the start of my PMR journey. They seemed to come somewhat later. CRP was 54 to begin with, at the end of August it was 18 and in September it was 11. So it was still outside the normal range, I understand.

I have to admit that I feel I am guiding myself on this journey, if you know what I mean, with the help of the information I am gleaning from the forum. The medical advise I have received feels like a bit of a mishmash and I don't feel I am being monitored. In other words I am being proactive to an extent. It's the way life is with NHS nowadays, I fear. I don't mean to be unfair with these comments as I do realise the NHS is up against it.

[PMRpro Ambassador in reply to tempusfugi]

I'm not sure it is entirely the state of the NHS - even in better days, the advice provided from doctors was more based on theory than experience and although we as a charity were getting somewhere, Covid put the brakes on that, stopping or delaying recruitment to studies and delaying the setting up of an educational programme for GPs which is desperately needed in some cases. There are wonderful GPs and a good GP is preferable to a poor or disinterested specialist - and that education programme is actually also needed there. It isn't a lot better in the USA or Australia and I feel there is a very different attitude amongst the English-speaking medics than there is here, for example, where there is far less panic about using pred and a willingness to admit low doses are required for some patients for a long time.

[123mossie in reply to tempusfugi]

you’re so right about self care, we have to be our own advocate & look out for ourselves. Thank goodness for this forum, it’s reduced the burden of disease for so many people.

[kulina in reply to tempusfugi]

It's not just the NHS, it's the same here in the US. PMRpro is right, doctors base their knowledge on theory (which is not always up to date) rather than experience. They don't even listen to experience and have a one size fits all attitude. I trust the advice on this forum more than my doctor's and yes, you have to be educated and very involved with your care. Never be afraid to disagree with your doctor if the advice doesn't feel right for you.

[jinasc]

The Tortoise won the race. Have you looked at the Tapering Plans in the FAQ section?

Both DSNS and Dorset Lady plans are in that section.

[tempusfugi in reply to jinasc]

Yes, thanks jinasc, I have looked at and read the plans you refer to. I am a Tortoise!

[Iamfedup]

Hi there I too am having knee pain which sounds very much like yours and my physio says it’s damage from long term steroids. After over three years I am down to two mg but also wondering if I should up them