Tapering

[Smilie67]

Hello to this wonderful sight. I haven't been on here for a while, the main reason that whenever a question arises I always seem to find the answers in someone else's chat...... but on this occasion could I ask any of you out there a question about tapering.

I've managed to get down to 4.5mgs after being diagnosed with PMR in August 2021 and started on 15mgs.

I o nly have about 5% of slight discomfort first thing on wakening and it only lasts for the first hour but is this enough not to taper down to 4mgs.

I'm going very cautiously but would so like to drop another 0.5 mg

I would be grateful for any suggestions on this.

Thanking all the people that go on this site and help to make things better.

[piglette]

If you feel that you are happy to have a go at dropping 0.5mg give it a go. Are you feeling worse than you did before dropping last time? In that case perhaps think about it.

[Smilie67 in reply to piglette]

No I'm not feeling worse it just seems ages inbetween dropping another 0.5 mg. Maybe therefore I should go a bit slower and not push it too much. Thankyou for replying

[piglette in reply to Smilie67]

At least your adrenals do not seem to be playing up which is good news.

[Smilie67 in reply to piglette]

Yes indeed, it seems a long journey, and I know so many people are on it, so that's a comfort on its own.

Thankyou again

[DorsetLady PMRGCAuk volunteer]

I o nly have about 5% of slight discomfort first thing on wakening and it only lasts for the first hour but is this enough not to taper down to 4mgs.

It this a new phenomenon since you've been at 4.5mg - or something that you've had previously? if the former then maybe 4.5mg is Your level for now...

so maybe stay where you are for a little longer and see if it goes.

If you've always had it, then that's just you I guess.

But to be honest, many would be very happy to be at 4.5mg in around 18 months, and there really is no rush to go lower, especially if you're not 100% sure.

[Smilie67 in reply to DorsetLady]

Thankyou for your reply. Yes I guess I am lucky to have got down to 4.5.

I always get some pain after reducing but this seems so minimal at the moment never the less it's still there, I may therefore have to be more patient.

I've become diabetic since starting pred so that's one of the reasons I so want to reduce further, as I know steroids can do harm but maybe not so much at the level I'm on or that's what I'm.hoping.

This really is a very friendly and useful sight thankyou to you all and lots of good luck to get off the steroids too

[DorsetLady PMRGCAuk volunteer in reply to Smilie67]

Me-well off thank you -6 years and counting..

[Smilie67 in reply to DorsetLady]

I'll be glad when I can say that one day. I'm pleased for you and thanks again for your input.

[PMRpro Ambassador]

I suppose if it is away once you take the pred it is OK - but don't let it get any worse. It isn;t worth it. Try the 1/2mg but be careful it doesn't get worse.

[Smilie67 in reply to PMRpro]

Yes I will be very careful I realise its not worth the rush in the long term.

Thankyou for your comments, I'll take it on board.

[BettyE in reply to Smilie67]

But to be honest, many would be very happy to be at 4.5mg in around 18 months,

[PMRpro Ambassador in reply to BettyE]

The median to get to 5mg is 18 months - that is the duration for half of patients.

[BettyE in reply to PMRpro]

I did not actually manage to reply. I tried to begin by quoting and agreeing with Dorset Lady's reply re 18 months but couldn't get quotes to work so abandoned my effort!.

As you will know, PMR pro, I am one of the other 50%. My two bouts took 3 and 5 years. My sister is coming up to her fourth year and regresses every time she has reduced blow 9 mgs. of Pred. We are both fortunate not to have GPs who want their patients to conform to the 18 month mantra.

[Louisepenygraig in reply to PMRpro]

I'm on 5.5 now, about to start trying to drop to 5 and that's after nearly 5 years! I think the main issue now is the adrenals so I'm still taking it slowly, I think i'd be happy to stay on a low dose (1 or 2 mg) for ever if need be

[Smilie67 in reply to Louisepenygraig]

Yes I think I would too. Its not so much of a worry when it's a low dose. A lot of people say that 5mgs can be difficult to drop to. The first time I tried I had to go back up to seven but the second attempt 2 months later was really good and now happy on 4.5 for the last 6 weeks to be absolutely sure I can taper gently to 4

Isn't everyone so different on this journey.

Good luck with your tapering, hope all goes well.

[Louisepenygraig in reply to Smilie67]

Thank you. It took me a long time to get to 5.5, possibly nearly 6 months. At one time I had hoped to be down to 5 by Christmas but I've stopped thinking like that (I hope!) Right now I'm taking 5.5 6 days a week and 5 on Sundays. In a bit I might try taking 5 on Wednesdays as well. Up until now I've always used the DSNS taper but I'm trying a different way as an experiment

[DorsetLady PMRGCAuk volunteer in reply to Louisepenygraig]

You will be down by Christmas...just don't specify which one!😏

..and if your experiment works, please let us know,..

[Louisepenygraig in reply to DorsetLady]

You're right and I will let you know how my experiment goes

[Smilie67 in reply to Louisepenygraig]

Good luck to you, I think you have to think that way, what works for one doesn't always work for another, I think we're all feeling it.Experimenting carefully you have nothing to lose and sometimes it's a gain.

Wishing you well in your lovely part of the world

[Louisepenygraig in reply to Smilie67]

Thank you

[AshPen9]

I've got Spondyloarthropathy, not PMR, Smilie67, but am at the same point as you in Pred reduction. I went straight from 4.5 to 4 a few weeks ago, but after 2 weeks my symptoms came back, so I'm currently back to 5mg and have been there for about 4 weeks. I'm planning to go back to 4.5mg and stay there for a couple of months. After that I'll be trying for 4mg but definitely using a DSNS taper. If it doesn't work next time I'm hoping the rheumy will let me stay at 4.5mg for a while. I think if you already have one or two aches and pains then maybe when you decide you're ready, do your drop to 4mg with a very slow taper. Good luck and keep smiling!

[Smilie67 in reply to AshPen9]

That's all very helpful thankyou, it's a tricky one and patience needed with a capital P. I wish you a good successful journey. I'm sure we'll get there it just might take a bit longer than we expect.

[Cosmos22Marigold]

Hi. Please be patient. I was diagnosed nearly 2 and half years ago with pmr and have suffered all along the way with steroids. They helped the pmr but caused lots of other problems but - - and a big BUT i have hopefully taken my last 0.5mg today. I followed Dorset Lady advice for 6 months then my Dr said 2 weeks ago that now I'm down to 1mg(which I had been on for 3 weeks) to go to 0.5 for a few days then STOP. Yipeeeeee. I really feel so positive that this time it will be ok. Its a very hard slog to get to this but well worth it. I do hope you have success but patience is a big part in this nasty complaint. Stick with the forum. They are the best and their knowledge is better than any Dr while tackling pmr. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to Cosmos22Marigold]

Dr said 2 weeks ago that now I'm down to 1mg(which I had been on for 3 weeks) to go to 0.5 for a few days then STOP. 

Please don’t do that -continue to use tapering plan to get to zero.

Your doctor obviously doesn’t fully appreciate that 1mg or even 0.5mg is very different to zero in relation to long term use with PMR. Don’t risk upsetting the apple cart for the sake of a few more weeks 🤔

[PMRpro Ambassador in reply to DorsetLady]

Snap!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Naturally 😊

[Cosmos22Marigold in reply to DorsetLady]

I will carry on with your advice as its helped me all the way through. Im a bit muddled now as I've felt good on the 1mg so can you send me what i should do from the 1 week on 0.5 that i have been on. Age is not on my side and i have forgotten. Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to Cosmos22Marigold]

I would follow this-0.5mg being old dose, zero being new dose -

SLIGHTLY LONGER TAPER (7 weeks)

Week 1 -Sun - new dose – Mon to Sat old dose

Week 2 -Sun, Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

Week 3-Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old dose

Week 4 -Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

Week 5 -Sun, Tues, Wed, Thurs, Fri new dose - Mon, Sat old dose

Week 6 -Sun to Fri inclusive new dose- Sat old dose

Week 7 -Every day new dose

Hopefully that will be the end-but as PMRpro says just be aware it may not.

If at any time during taper you feel it’s not working then repeat previous week

[PMRpro Ambassador in reply to Cosmos22Marigold]

Please be wary. We know from experience that 1mg and even 1/2mg is plenty to keep PMR inflammation under wraps when the disease activity is very low but stopping altogether results in a return of symptoms as the inflammation builds up over a period of months - and it can be 3 or 4 months and sometimes more, before you notice it wasn't quite gone. Doctors often underestimate what a very small dose can do!

[Cosmos22Marigold]

There is me telling you to be patient and now i am the one to be advised to do the same. Its true. We all want to get this PMR out of the way but i have followed DL from about 6 months ago and its worked with just one flare up so i have no hesitation but to continue which only takes me to the end of march so well worth the effort on my part. I'm watching what i eat and also doing a small amout of exercises but trying to walk more now that I'm not so giddy. Thanks to everyone on the forum for all the help and advice. I'll hope it all goes well for everybody on the site. X

[Caloo650]

I am experiencing exactly the same with 5 to 10% stiffness when I first wake up. I have been on 4.5 prednisone for 2 weeks but a bit afraid to take the leap to 4mg until that is gone. I thought I'd try just one day at 4mg in a week's time. What a journey eh?

[PMRpro Ambassador in reply to Caloo650]

Have you looked at the slowed tapers in FAQs?

[Caloo650 in reply to PMRpro]

Yes thanks. I have been following that regime

[Smilie67 in reply to Caloo650]

It does make you feel cautious when there is pain again on tapering however slight.

I was on 4.5 for 6 wks, then just tried 4, yesterday and this morning the discomfort is so so slight but will now keep to 4 for many weeks.

My experience is dead slow seems to be working and just like everyone else I so want to get off steroids and particularly as I've acquired diabetes along the way but I know its working the slower I go.

Wishing all the luck in the world that your tapers work for you. It sounds like you're being very cautious too.

[PMRpro Ambassador in reply to Smilie67]

Remember that as you get lower, the percentage change is greater and so you are more likely to experience steroid withdrawal - that will improve over the following few days, a flare tends to take longer to appear and then gets worse.

[Smilie67 in reply to PMRpro]

Thanks so much for your comments, they are very valuable to me and I really appreciate this site and the people like yourself who go on it, however small it seems it makes a big help.

[AshPen9 in reply to Smilie67]

Just been back to my rheumy, Smilie67, after failed attempt to get from 4.5mg to 4mg. Currently back at 5mg. He has put me on the slowest taper in the world ever! It's Dorset Lady's simple taper, but take the new dose on one day a week for four weeks, then on two days a week for four weeks. So it will take me 6 months to get from 5mg to 4mg. I'm quite happy with that. Hope you do well with your taper.

[PMRpro Ambassador in reply to AshPen9]

Blimey - obviously a convert to slow and steady!!!!

[AshPen9 in reply to PMRpro]

I was really pleased PMRpro, after all the reports on here from people being made to reduce relentlessly whatever the consequences. Also as soon as I mention being ready to reduce my GP just writes 'drop 1mg per month' on the prescription.

[PMRpro Ambassador in reply to AshPen9]

Where/who is your rheumy?

[AshPen9 in reply to PMRpro]

Dr Bowden, North West

[PMRpro Ambassador in reply to AshPen9]

Andrew Bowden? Handy - that neck of the woods has been a bit of a dessert in the past!!!

[AshPen9 in reply to PMRpro]

Yes, but I don't have PMR/GCA. He thinks I will need to take Pred long term and said that's OK as long as I can keep under 5mg. Thinks that this time next year I will have only got as far as 4mg. Last time I went I told him about your bucket metaphor and said he'd not heard it explained in that way before. In fact I've a sneaking suspicion that he noted it down.

[PMRpro Ambassador in reply to AshPen9]

Sarah Mackie at Leeds loves it! Been looking at reviews - he sounds like another Sarah and THINKS, And knowing long term low dose pred is OK is a big advantage

[AshPen9 in reply to PMRpro]

He's really nice, listens, happy to answer my long list of questions. He always says I've tried hard to answer all your questions! Ended up googling one for me last week because it wasn't anything to do with my treatment. Asked me about HU and was it Prof Dasgupta that PMRGCAuk had dealings with. I said I thought he might have retired and I mentioned Sarah Mackie and Rod Hughes. He said well they're definitely real people!

[PMRpro Ambassador in reply to AshPen9]

Yes, Baskar Dasgupta was the co-founder of the charity and still involved. Sarah has partly taken over I think but she is incredibly busy as she does clinical and research about half and half