Oh well! 🤷‍♀️ I tried!

[Lyndaki]

So I’d been on 2.5mg for quite a few months & decided to try alternate days on 2/2.5 & successfully got to 2mg. Rheumatologist was happy with my last results & said when I felt ok to taper a bit lower then fine. The last couple of weeks I’ve been trying 2, 2, 1.5….,but by yesterday the old pain across the collar bone & upper arms had returned with a vengeance!🥴 So I took 3.5 yesterday & have taken 2.5 yoday & the pain has virtually gone. So tomorrow I’m going back to 2mg for a week. My question is, can I then start to try the Dead Slow method of tapering, or should I wait a while? Thanks!

[DorsetLady PMRGCAuk volunteer]

Personally I would stay at 2.5mg for at least a week, perhaps longer. As you’ve found at such low doses 0.5mg really does make a big difference. ..and there is no rush.

Then on to a slower taper regime…..you’ve had one blip, learn from it…. don’t risk repeating it.

[Lyndaki in reply to DorsetLady]

thank you, I’ll take your advice! Don’t want to upset the apple cart!

[DorsetLady PMRGCAuk volunteer in reply to Lyndaki]

No you don’t 😊

[PMRpro Ambassador]

I'd be in no great hurry yet. You are at a very low dose, one that Prof Dasgupta, co-founder of the charity, told us he often kept patients on long term because it reduced the risk of relapses.

You do need to keep trying, you'd never get off altogether if you didn't, but it also isn't a good idea to keep trying all the time - the stress can build up, especially when/if you struggle. A month or two wait isn't a disaster at this stage.

[Lyndaki in reply to PMRpro]

Thank you!

[HeronNS]

From my experience(s) now ranging over several years, I would be very cautious with tapering and only if your symptoms are properly under control. At this low level, take as long as you need at every stage, don't try to adhere to a schedule. That was my undoing I think.

[Lyndaki in reply to HeronNS]

thank you. I have been feeling great lately & with much less fatigue, hence I thought I’d give it a go…but seems like I acted a bit too soon! One learns by one’s mistakes!

[HeronNS in reply to Lyndaki]

It may just be that you have to go more slowly. Take a break, go back to your accustomed effective dose. One day, when you feel particularly well, take a tapered dose again - but without the expectation that you are going to be doing it again in a day or two. You're just kicking the wheels, not taking the car for a spin. My theory is this occasional reduced dose gets the body used to having a smaller dose presented to it. A sort of modified Dead Slow Nearly Stop taper. This seems to be working for me, but I don't like to think how long it took me to get from 2.5 to 2, so I don't!

[Lyndaki in reply to HeronNS]

That sounds a great idea! Thank you!

[Lookingforideas in reply to HeronNS]

yep, that sounds a bit like me - I’ve been stuck at 0.625 (which is a quarter of a 2.5mg tablet) for a good couple of months now. I can get away with the odd 0.5mg once in a while but when I try to taper properly into it - and get close to alternating every day, I start gradually getting stiffer and stiffer. I don’t want to relapse/flare but I’m starting to wonder if it’s psychosomatic? It’s such a tiny increment 🤷‍♀️?

I’m going off on holiday today again for about 7 weeks and I’m usually more active down there in Spain than I am at home so I might just resign myself to sticking at the 0.625, licking the crumbs from the tiny dissections, and start trying the 0.5 again in a couple of months when I get home. What’s a couple of months between friends at this level? - I’ve got an plentiful ‘stash’ of pred packed with me in case of an unexpected flare 🙄 but hoping not to have to use them. I’ll be coming up for 3 years in mid/late December.

[Lyndaki in reply to Lookingforideas]

I’m intrigued…how do you quarter the tablets?? I have a cutter with does half, but they’re so tiny!

[Lookingforideas in reply to Lyndaki]

Ha ha, with great difficulty🥴… often accompanied by a bit of swearing and knashing of teeth😃 hence the remark about ‘licking the crumbs’ 🙄. I mostly use the pill cutter and just present the 1/2 again (which only just doesn’t slip through the gap) , but it’s rare to get 4 ‘proper’ 1/4s out each tablet Big whoop & sense of achievement when I do! 😂

But if they’re a little bit varied in size, I have some tiny pill boxes and keep all the pieces of one pill in the box I’m using so it averages 0.625 over 4 days I’m working on the assumption that at this stage & in such small amounts a tiny daily variation should be ok and maybe actually a good thing? I also have a very small thin sharp knife that I sometimes use to ‘trim’ a few crumbs off a particularly big piece and take them with one of the smaller bits - hours of endless free entertainment 😉

[DorsetLady PMRGCAuk volunteer in reply to Lookingforideas]

”hours of endless free entertainment 😉”….

Yeah right, I’ll take your word for it …🤔

[Lookingforideas in reply to DorsetLady]

😂😂😂😂

[HeronNS in reply to Lookingforideas]

Ummm, any reason why you don't have 1 mg tablets?

And yes, it is interesting how even a mg or half a mg can make a difference. Who knows why?

[Lyndaki in reply to HeronNS]

For my part, I live in Spain & the smallest I can get is 2.5! Thankfully I can get the 1mg tablets from U.K. as I’m covered under the Withdrawal Agreement (Brexit)

[HeronNS in reply to Lyndaki]

I've even heard of someone who can only get 5 mg! Think they lived in Cyprus, not sure.

[Lookingforideas in reply to Lyndaki]

ah, I live in uk but have a place in Spain too. We’re on the ferry right now from Portsmouth to Bilbao. Getting off on Tuesday so will be ‘home’ in Spain by Tuesday night. We’re in Murcia-near Los Alcazares… where are you? 😄

[Lyndaki in reply to Lookingforideas]

Olvera in Andalucía. Have a good trip! 😎

[Lookingforideas in reply to HeronNS]

I do have 1mgs and did use them but when trying to go (Dnsn) to 0.5 I couldn’t. So having lots of 2.5s lef over from that stage, even though I’d cut some them into 1.25 previously, I decided to try the 1/4s and that’s has worked. But still can’t get to 0.5. When you think if the minuscule difference between 0.625 and 0.5 it’s unbelievable that it makes a difference I’ve r a week or two - but for me it does 🤷‍♀️? 😃

[Ridge]

I’m coming up for 4yrs. I’m sure if I had known what I know now due to joining this website I would have managed everything better and be lower than 6mg.

[HeronNS in reply to Ridge]

Possibly. I followed a very slow taper and still ended up after several years at around 2 mg with a flare which needed quite a lot more to deal with for a few months. Thankfully that seems to be in the past now, and I'm back to 2 mg. We are all different....

[Suffererc]

I am on my 3rd attempt at 1.5. Just tapered to 2 so am staying there for a while. GP phoning Wednesday, expecting the usual rant. But she doesn’t have to put up with the pain and disappointment of having to go high again. I follow DL DSNS it works for me 😊

Good luck

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Mine is based on DSNS (in being lot longer than mine) but based on a weekly basis -however whichever one works is the right one for the individual.

[Lyndaki in reply to Suffererc]

thanks! I’m taking it steady now….forewarned is forearmed!

[HeronNS in reply to Suffererc]

There's really no reason to rant about you being on 2 mg of pred! She should be happy that a really low dose keeps you reasonably painfree and functioning.

[Suffererc in reply to HeronNS]

it’s ok. I am hard if hearing so I can have selective hearing. 😂🤣😂

[HeronNS in reply to Suffererc]

👍

[Broseley]

it's amazing how a half mg dose can have such an effect when you get to lower doses. I was instructed by rheumy to reduce by 1mg from 10mg, every 6 weeks. I got down to 7mg, but started to feel a little stiff in my hips. When it came to 6mg I got scared and went instead to 6.5mg against instructions. After 2 weeks the stiffness was getting worse so I phoned the rheumatology helpline. The nurse said to go back to 7mg for 4 weeks then go to 6mg and 7mg on alternate days for 6 weeks. We'll see, but back on 7mg I'm fine. I really don't think its worth pushing it.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Don’t know why they push to alternative day system of tapering ..always think it’s more difficult-but what do we know.

Good luck with the return to 7mg -and as you say no point in pushing it.

[PMRpro Ambassador in reply to DorsetLady]

Think it doesn't occur to a lot of them you can cut a tablet!

At least she got the go back to 7mg bit right!

[Lyndaki in reply to DorsetLady]

that’s what my a rheumatologist tells me too…but at this low dose it doesn’t work!

[HeronNS in reply to Lyndaki]

What doesn't work, alternating doses?

I read that alternating doses is generally not recommended for PMR as we need the steady supply of pred. Which is why tapering is so difficult to begin with. I did try alternating for a bit, and found it just seemed to confuse my body. However, there are some few for whom it seems to work. We are all different.

[Lyndaki in reply to HeronNS]

Alternating doses has worked for me so far, especially since reducing from 20mg (I started on 60) but now I’ve got this low, I have to be more careful & am trying the DSNS method ….once this current blip is over & I'm stable again.

[MarkWin]

thank you for raising this critical question. Just dropped to 2mg/day (GCA sufferer) and finding I have slowed immensely. So will definitely be watching out for any relapse. Not helped by covid positive this morning after 2 1/2 years of being ultra careful each day seems to be something else t moment, but this forum is great leveller and always has great advice.