Tapering query

[Queenie1901]

Following the exceedingly helpful replies to my previous posts I realised I had tapered too fast for me from 8mg to 5mg and in steps that were too big. Had increasing aches and stiffness plus tiredness. So took up suggestion of adding 5mg for short period. Took 10mg for 6 days which improved everything to just a mild awareness in mornings, then 2 days at 9mg then 2 days at 8.5mg then 8mg where I stopped about 10 days ago as that was the previous dose with no problems. Can't say all effects were eliminated but only low level in mornings. Went back for a gentle 45 minute massage (not deep tissue) after 2 days on 8mg, first time since diagnosis. Just thighs biceps and shoulders. No side effects. Had second session one a week later. Same day did a longer walk than normal. Next day very tired and had increased soreness and aches in massage areas so rested up. Following day much less tired but aches/soreness still more noticeable. My question now is......is it only that I just overdid things a bit, or was massage responsible for releasing something or aggravating something or has it taken 10 days on 8mg to find out the dose is too low so should I try a short few days at 10mg again?

(Just to complete previous post item - I mentioned small area of scalp tenderness in previous post but it has disappeared as dosage reduced from 10mg)

[SnazzyD]

I couldn’t tolerate massages at all and I didn’t have the PMR bit to worry about. You are entering a delicate time which can be fraught with flares, adrenal insufficiency or both; it is sometimes hard to tell. Personally I would just back off anything unusual and take things down in 0.5mg drops. I found it very difficult to see the wood for the trees from 8mg downwards. I like to see it as fooling the body into not noticing the reduction. Personally I suspect going down that fast from 10mg after a bit of a flare up would have upset things in my body, but that’s me. No totally sure what zipping back up to 10mg and then zipping back to 8mg is achieving. Somewhere below 10mg is not enough so you need to pinpoint more accurately where it is and at the same time not up set your body into a spin with reductions over 10% too suddenly. No doubt you’ll get other opinions soon!

[Queenie1901 in reply to SnazzyD]

Thank you SnazzyD. That is all very helpful and is making me focus harder on exactly what point I tipped over from doing ok to doing not so well! The first time round 9mg to 8mg gave me a couple of days awareness of things then they faded. Then 8mg to 7mg was much more noticeable. I suspect I should have stayed at 8mg for longer and started a very slow taper which at the time I knew nothing about. I just have to decide now whether 8mg at the moment is ok or not. In the process of monitoring this by waiting to see what happens I just don't want things to get worse. I made that mistake before! To finish on a positive note this forum is amazing. I have read and leaned so much in such a short space of time. Thank you all. 👍

[PMRpro Ambassador]

If you have problems with myofascial pain syndrome that can form hard knots of inflamed muscle fibres in the larger muscles which are often called trigger points and are concentrations of the same cytokines (in this case inflammatory substances) that cause PMR when they are through the system. If you then have massage or manual mobilisation of the trigger points it can release those substances into the rest of the body and it can feel like a flare of PMR. Massage can have a similar effect on muscles as exercise - and I'd suspect you did too much on one day. It is often recommended that you drink plenty and get fresh air after most complementary therapies - but gentle exercise is important. That bit further walk probably did it.

[Queenie1901 in reply to PMRpro]

Thank you so much. That explains the science behind it for me very well. I guess my "gut instinct" was that the two things on the same day were too much. I should have had more fluids than I did as well. So massage is not a complete no-no then, just caution and keep an eye everything else. I also feel more confident now about maintaining the 8mg while this all settles and monitoring it all carefully. What a journey........for everyone!

[PMRpro Ambassador in reply to Queenie1901]

I've had myofascial pain syndrome for years and really like therapeutic massage - but I do expect I may feel worse rather than better for a day or two! Some therapists actually say that - then it rarely happens!!!

[Queenie1901 in reply to PMRpro]

Thank you for this help PMRPro. Just one more question! Having had the reaction after the massage and walk I am obviously even more aware than normal of those areas which became sore and achey. In the meantime I am staying at the 8mg dose. Hopefully assuming that the massage was an additional temporary aspect here, in general how long should I be aware of any symptoms following a step down in the taper before it is obvious that it is the right dose or a bit too low? I have no pain or reduction in mobility with arms or shoulders but is it ok to still have some soreness and mild stiffness a.m. which wears off later in day but does not fully disappear? (Trying to avoid the lifelong habit of putting up with things which should not be ignored!)

[PMRpro Ambassador in reply to Queenie1901]

My criterion is whether they are increasing - either in level or duration. Morning stiffness is always likely to be there if you are one of the people for whom the antiinflammatory effect doesn't last the 24 hours. Splitting the dose helps some people there.

[Queenie1901 in reply to PMRpro]

Ah ok. Thank you. That makes sense for me as never had full 24 hour cover. But will continue to monitor carefully.

[Queenie1901 in reply to Queenie1901]

I've been monitoring this carefully for any increase in level or duration as you advised. The level is about the same, maybe a little more sore in shoulders in the morning than a week ago, but the duration seems longer each morning. Although the overall feeling is just background soreness and stiffness, mostly across shoulders and in biceps and upper thighs, my personal feeling is that this is not abating but as you described in other posts, a slow drip of inflammation not "mopped up". I did leave message for my GP re tapering queries and symptoms but no reply yet. With a weekend upon us and a couple of socially distanced family commitments planned requiring extra effort I am just wondering whether a step up to 10mg for a week may just mop up these low level background symptoms. They are almost non-existent by mid afternoon and in the evening but still slightly aware of them even then.

[PMRpro Ambassador in reply to Queenie1901]

You might need as little as 8.5mg to make the difference. I'd certainly try a bit more if it were me. And I have to be brutally honest - I would be finding an excuse to stay home...

[Queenie1901 in reply to PMRpro]

Thank you. I might just do both! I went up to 10mg from 5mg for 6 days a few weeks ago, then 9mg for 2 days then 8.5mg for 2 days , then 8mg which was the point first time round in May where I felt it was ok. I am thinking that going back to the 8mg was just a little too far this time. In fact the 9mg was ok. When I get this right and feel stabilised for a while I am going to follow the very slow taper from DL. Have a good weekend.