Am I on the right track?!

[Timek]

Was diagnosed in Nov 23 with pmr and put on 15mg until 22 dec when dr dropped me to 12mg. All was fine with no niggles. On 15 jan I reduced to 10mg and the old aches and stiffness are beginning to return....upper arms and hips. I certainly don't want to be back where I was in Nov so I'm wondering if the drop has been too swift? I took 11mg this morning to see if this helps. Your advice, my friends would be so welcome. I am by nature a just get on with it person but know i need to be sensible! Thanks

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome.

Although 15-12.5-10mg might be a recommended taper front the guidelines that doesn’t mean it always works…. So suggest you return to 12/12.5mg where last felt okay, although in your first post you didn’t seem 100% happy with things.

By a ‘get on with it person’ hope you haven’t assumed that by just taking the meds everything has returned to normal..not quite as simple as that. You still have underlying illness chugging away so you do need to remember that.

I know I sent it before, but maybe have another look at this -healthunlocked.com/pmrgcauk...

[Timek in reply to DorsetLady]

Thankyou for this. Just read the attachment and think slower reduction is probably the way to go. 🤗

[DorsetLady PMRGCAuk volunteer in reply to Timek]

Yes- most definitely- 1mg a time until 10mg - but do make sure that you get things back under control first….otherwise similar thing may happen again.

[Timek in reply to DorsetLady]

Thankyou....think we probably know our bodies better than the Dr no matter how good he's been !

[PMRpro Ambassador]

Can only echo everything DL has said.

[piglette]

I am a sensitive little flower and could only drop 1mg over 10mg and then 0.5mg after that. Some people are tougher than I am!

[Timek in reply to piglette]

Thanks..yes going to slow it down .

[Sherlock57 in reply to piglette]

I must be ‘a sensitive little flower’ too! It’s so helpful getting advice on here to know we’re not alone.

[piglette in reply to Sherlock57]

The sensitive little flower society!!

[alangg]

Yep - too swift and too big a drop! My system was to reduce using DSNS over a 4 week period and then wait for 2 weeks on the new dose before starting to reduce again. And each time I was careful to drop by no more than 10%.

It involved spreadsheets (I love a spreadsheet!), a very co-operative GP and nearly 3 years to get from 15mg to zero but it seemed to work!

[Timek in reply to alangg]

Thankyou for the info. Great advice

[Oigami in reply to Timek]

I was first diagnosed with PMR in August when I had a bad flare up affecting my legs and groin. This was the first time I was out on steroids and I was on 20 mg reducing to 15 mf until a second flare up 2 months ago . 4 weeks ago I was on 40mg a day due to second flare up badly affecting wrists . Because of side affects ( increased blood pressure, etc) complications caused by steroids consultant recommended reducing from 40 mg by 5 mg a week ( which is quick) . I am now on 20mg a day and it is going ok. I'll drop another 5 mg a week for next 3 weeks and see how it goes. Once it gets to 5mg the consultants said it needs to be be reviewed by specialist ( or GP) as reducing from last 5mg needs to be done much more slowly over a period of months .

[DorsetLady PMRGCAuk volunteer in reply to Oigami]

Not sure where you live (UK or elsewhere) but 40mg very high for PMR -even in a flare situation…no wonder you had side effects.

And although 5mg every 3weeks seems quick -it is probably okay in your situation-at least down to 20mg -and maybe 15mg… but that might be more difficult than consultant realises. Especially as you have flared at that level before. ..that’s your body telling you something..

You need to going a lot slower way before you get to 5mg…. There are a lot of bridges to cross before you get there..

If you haven’t read this please do -

healthunlocked.com/pmrgcauk...

[Lclmlbls in reply to alangg]

I love spreadsheets too! 😀 It’s taken a year to get from 15 to 9. I want to give 8 a go but it’s more than 10%.

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

Well try 8.5mg then - if you have plain white tablets that can be cut not a problem.

If you’re on EC tablets then request 2.5mg as well as 5mg and 1mg…and do the maths…😂🤣

[Sweetpeasoprano in reply to DorsetLady]

My GP carefully explained to me how to make 12.5 mg from 5s and 1s. I didn’t tell her what I’d taught for 30 years! 🤣

[DorsetLady PMRGCAuk volunteer in reply to Sweetpeasoprano]

Ahh bless 😊

[Lclmlbls in reply to DorsetLady]

Thanks for that, I can manage to work it out and don’t need to use the spreadsheet for that! 🤣 I was just trying to miss out 8.5 if possible. At the moment I have 5mg EC and 1mg plain. I’m trying to get my GP to prescribe 2.5mg EC and 1mg EC.

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

EC 2.5mg shouldn’t be a problem as they are cheaper than plain white ones ….but the EC 1mg might be - for opposite reason. Often discussed on here.

[PMRpro Ambassador in reply to Lclmlbls]

Or you do 1mg using a very slow slowed taper - part of the use of the slowed tapers is to deal with dose changes that are more than 10%

[Lclmlbls in reply to PMRpro]

When you say slow, do you mean more than 5 weeks to taper from 9 to 8?

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

That’s what most would say is a slower taper- but it can be extended as necessary.. especially if you cannot get around the 1/2mg reduction.

[PMRpro Ambassador in reply to Lclmlbls]

When you are looking at under 5mg - yes, And when you are at 2mg and below, 1/2mg and probably over at least 8 weeks. The lower, the slower! If you can't do 1/2mg because of e/c tablets - 1mg over 12 weeks is not unthinkable.

[Sweetpeasoprano in reply to alangg]

🤣Can’t beat a good spreadsheet!

[PMRhealth in reply to alangg]

Thanks for that! Are you still on zero?

[alangg in reply to PMRhealth]

Yes, I am still at zero and have been since about April 2020. But even when I got to zero, I was still aware that I had some residual stiffness and wasn't back to full fitness even though I believed that the PMR activity had stopped and I was no longer in need of Pred to control the inflammation. It took another 6 months before I went a whole day without thinking about PMR.

[PMRhealth in reply to alangg]

That's very encouraging! Thanks for sharing