Shaky hands? And reaction to shock ?

[Hopingsail]

Pleased to say that following good advice on here from PRMpro and others re shifting my Pred to 2am has relieved the morning stiffness and ache in L shoulder, wrists and hands. The only thing still noticeable apart from fatigue is that my hands are a little bit shaky. I suspect this may be due to the assault of PMR on the muscles - or Pred?

Yesterday I was physically threatened by a huge grab-lorry driver who was annoyed that I and another witness had seen him scratch my parked car - like it was my fault!? It was a horrid and frightening experience and left me shaking till early evening. I’m not (pre-PMR) prone to this sort of reaction to shock and wonder if anyone else has experience of this? (Better and no other ill effects after a good nights sleep.)

[Hopingsail]

UPDATE! I'm replying to myself as GP just rang (yes he did, bless him!) with my latest blood results showing that over the last three weeks: ESR down from 10 to 2 / CRP down from 28 to 8. He was pretty chipper about that. He approved my changing to the 2am Pred time and is very keen to get started on tapering, given that I have responded pretty well to Pred and symptoms have eased. He suggested alternating days of my 'starter' dose of 15mg with lower dose of 10mg = 12.5 mg. Stay on this for some weeks then go to 10mg with smaller reductions to follow. I haven't see this alternate day/dose regime suggested as a tapering method - but I'm pretty new on here so may have missed it. 2 questions for you lovely folk out there, please:

1. Opinion on the alternate days regime?

2. Does it make any difference to start tapering from a 2am timing rather than a 7am? - and is there any possible advantage in weaning myself from 2am to 7am before starting tapering the overall dosage? Or maybe split-timing?

Best wishes fellow-travellers!

[Rugger in reply to Hopingsail]

I started on 15mg and stayed there for 2 months; then 13mg for a month; then 12mg for a month; 11mg for 2 weeks; 10mg for 2 months; 9mg for a month and from there I tapered using the Dead Slow Nearly Stop taper (DSNS). I can't remember why I was on each dose for a specific length of time, but just wanted to illustrate that it pays to take time with the reductions. Can you ask your GP for 1mg tablets to give you a bit more flexibility? With a pill cutter, you might be able to cut the 5mg tablets into approximate quarters! 😉

I am so sorry that that bully of a driver caused you to be in shock and spoilt your visit to Sue. I expect the prednisolone is the likely cause of how you reacted, as it messes with our emotions!

Take care.

[Hopingsail in reply to Rugger]

Thanks for that Rugger - I have ordered a pill-cutter! Are you now “clear” , may I ask?

[Rugger in reply to Hopingsail]

You may ask! I feel that I may be clear of PMR, but don't know for sure, as I developed GCA-LVV (Large Vessel Vasculitis) after 3 years of PMR. I'm still on 5mg pred and Tocilizumab for the GCA, so they should be coping with the PMR if it is still active. I suppose I'll know only when I eventually taper off the medications and find out if things have gone into remission!

When you get to 10mg, if not before, do insist that your GP prescribes 1mg tablets.

Best wishes to you on this 'journey'.

[Hopingsail in reply to Rugger]

Gosh, I read your info and gather it has been quite a journey (understatement!).My GP, despite being a bit keen on reducing, does listen and had said he’ll give me small pills when I’m ready. We get on really well.

I, like you, retired from the NHS having spent the last 8 years of my working life as Head of Chaplaincy and Bereavement Support Services at Portsmouth Hospitals Trust. Loved it! - and still keep in touch with a gang of midwives and gynae nurses I worked closely with. We have an end-of- lockdown party in the diary!

‘Rugger’ had me fooled - I was about to be sympathetic at the thought you might have had to change sports.... though have to say my 14yr old grand-daughter is in the England Touch-rugby training Squad.! Rug-making is probably safer!

Take care - and thanks again

[PMRpro Ambassador]

I hope you told the police about the intimidation? And yes - I react very strongly to someone being aggressive towards me. Even on the phone. Physical presence is so much worse.

NO, no, no no. Just because the markers fell nicely does NOT mean you are ready to reduce the dose like that. It is grossly unfair on your body to jump about doses like that - 2.5mg is fair enough to try but get a pill cutter and use one of the slowed tapers to get to 12.5mg in a month. Then do the other 2.5mg.

Doesn't matter what time you take a single dose when it comes to tapering - bit more complicated if you need to split the dose and take it twice a day but if 2am is doing the job - great.

[Hopingsail in reply to PMRpro]

Thanks so much for your advice - as ever. I was a little bit uncertain about the level of jump hence my post.. I promise to curb my enthusiasm and get a cutter! I've asked Dorset Lady to send me her tapering plans too.And yes - I did notify the police. It was most unpleasant, not least in realising my own severe reaction. I had just parked on the way to see my wife for the weekly care home visit - I had to cut that short as I just had little left to give after 15 mins....

You are such a support...

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro- too big a jump - 12.5mg definitely not as suggested. .. and not until you have recovered from yesterday - that may well se you back.

Link to all tapers - healthunlocked.com/pmrgcauk...

[piglette]

My rheumie just gave me 5mg tablets originally and expected me to reduce 5mg at a time. I have never felt so rough.

[Bcol]

Hi, I've been taking my Pred at around 02:00 for many months and had no problems with tapering. Pill cutters work fine, particularly on the 5mg, 1mg a bit fiddly but also manageable. Agree with everything from PMRPro and DL. Hope your lorry driver gets his comeuppance somewhere down the line.