Tapering advice please!

[kalimche]

PMR was diagnosed last Oct and I began on 15 mg pred a day. Began to taper in December and in June began to follow DL 5 week taper from 7 mg to 6 mg, and then onwards down to 5 mg, where I plan to stay for a few weeks before starting a new slow taper in 0.50 mg stages.

About a month ago I moved awkwardly and hurt my leg below my Right knee. The next morning I awoke with dreadful pain, a very swollen knee, and unable to weight bear on that leg. Eventually a few days later I went to A&E - the doctor confirmed he thought I had probably strained my ligament, and it would probably take some 6 weeks to fully recover. (He added that the steroids would help and act as an anti-inflammatory). There is still some pain there but at least I can walk again. My other knee hurts sometimes as well - either in sympathy with the Right one or more likely because of moving differently etc and my old osteoarthritis that I had in both knees. This was much improved when my GP referred me to the gym - which I continued after the PMR diagnosis, finding the gentle rowing and cycling helped a lot, plus post PMR I did some weight bearing on the treadmill. Obviously with Covid 19 - I had to stop all this, and would walk instead for an hour + 2 or 3 times a week, but am planning to return in a couple of weeks time when my knees are feeling better.

I have never had any pain or stiffness during my tapering - except sometimes some neck ache. I still have neck ache - sore at the back of my neck and around the sides above my shoulders and collarbone. Specially sore when I first get up.

I am considering upping the pred to 10 mg a day for maybe 5 days and seeing whether this will "mop up" the inflammation and resolve my neck pain and maybe help with the knees as well? Then come back to 5 mg and stay there for a month or so.

What do you good people think? Does that make any sense?

[kalimche]

BTW - I was taking co-codamol for my knee pain, but am no longer, and the neck pain is not that bad that I need to taken anything (plus prefer not to anyway).

[PMRpro Ambassador]

A fall can be enough to trigger a flare so I would think a few days at a higher dose might be worth trying. Not entirely sure I would drop straight back to 5mg but if I did I would stay there a month or two. One top PMR rheumy likes to keep patients at 5mg for up to 9 months before continuing the downward journey and finds that helps a lot.

[DorsetLady PMRGCAuk volunteer]

Like PMRpro says - better to drop back down to 5mg in 2 steps rather than 1.

10-7.5couple of weeks then 7,5-5mg. Then s month before attempting taper.

You have reduced quite quickly to date- so no harm done if you make doubly sure all is okay.

[kalimche in reply to DorsetLady]

Hi DL, I don't know if this is the right way to do this - or if I should start a new thread? But as you (and PMRPro!) were so kind to reply to me last time... I have another question!

So as stated, 10 Sept I upped from 5 to 10 mg - to see whether this would relieve the knee and neck pain that I had. I stayed at 10 mg for 6 days....and really did not feel much change.

I followed your advice to drop down in steps (rather than go right back down to 5mg as had been my original intention). So I dropped from 10 mg to 7.5 mg. And Thursday will mark 2 weeks at 7.5 mg. I must say the knee has improved (probably the course of the ligament injury) and since about 1 week ago, I did feel a slight improvement in my neck pain... (but nothing to write home about so I am thinking that could be down to general OA in my neck - it has "clicked" for years when I turned my head for example watching TV - and is nothing like my neck/shoulder pain I had when PMR diagnosed).

So my question (Finally!) For the next 2 weeks: do I drop from 7.5 straight down to 5mg? (where I intend to stay for a few weeks once I get there...)

Or should I do a slow taper DL type taper 7.5 - 5?

or should I taper gradually say 7.5 to 7.00 one week (or so), then 7.00 to 6.5 one week and so on?

I have no problem either way - realise I have tapered quite quickly so far (15 to 5 in just under a year).... without any fatigue or major pain problems) and committed to the go slow way of thought!

Any advice - as ever- much appreciated!

[DorsetLady PMRGCAuk volunteer in reply to kalimche]

As it’s not 100% certain all the pain is PMR related, you could try your third option, but it would be inclined to stay at each dose for 2 weeks rather than one. That way is a bit more sensible just in case it is the PMR playing up.

Obviously if things don’t continue to feel okay, then stop and re-evaluate. There is no rush. And when you do get to 5mg, then stay there for at least a month before you think about tapering.

Hope all goes according to plan.

[kalimche in reply to DorsetLady]

Ok - and thanks for your swift reply!! So I shall go down by .50 in 2 week stages. Actually just remembered I have a blood test tomorrow (more because test made at time of ligament raised some things which since ok but given that I was actually talking to a doctor .... I think I suggested it might be an idea - 1 year on- to see how my PMR was faring)!! I shall see tomorrow what they actually test for... and then will see when I can actually discuss with doctor!!

Honestly in these Covid days - the advice and support you get from these forums is absolutely vital. Thank you all again.

[PMRpro Ambassador in reply to kalimche]

I would have said exactly the same! But I had gone to bed ...

[kalimche]

Thank you both - I will do as DL has said! I didn't actually fall - just moved funnily as I thought I was about to stand on the cat! But been thinking - doesnt PMR (or is it the pred?) affect tendons and ligaments?

[PMRpro Ambassador in reply to kalimche]

Pred can yes - and PMR is inflammation of the soft tissues surrounding the joints. Inflamed tendons are delicate items.