FIRST TAPER

[yogabonnie]

I will have been on 30mg for 3 weeks when I return to the doc. He says he will drop it to 20mg then. is that big jump okay ? Is it only after you have been on a long time at 10 that you taper so slowly? Thanks. I looked around but didn't find this answered BUT found so many other answers that I appreciate. Absolutely you are all more knowledgable on that side of the pond. What happened in the old days... over 70's just sat and called this OLD AGE??? We are lucky we live in these times and have the INTERNET!

[markbenjamin57]

Greetings and Welcome yogabonnie - from the other side of the Pond

Well, yes - (or maybe no..). Your doc might advise such a speedy drop (many do) but I'm certain that the 'Aunties' (Experts) here will be here very soon to give you some wider and more reliable advice on tapering the Preds more wisely, and in context. Unfortunately, not all Medics are as up-to-speed on PMR as many of us PMR 'Veterans' are here. Watch this space..

I agree - once upon a time, health conditions like PMR were simply dismissed as 'Old Age' and / or 'Rheumatics', or similar. Nowadays (and, as you say, thanks to the internet age?), we have such a wider and usually more informed source of advice, research and trusted information about how these AI illnesses work - and also how to manage and cope with them.

Keep us posted on your progress, and try to keep smiling on the PMR Journey. 'This, too, will pass'. You are in very good, trusted and reliable company here

Best wishes

'Uncle' MB

[HeronNS]

Personally I think after three weeks you are actually on the edge of maybe having pred withdrawal symptoms with a very large drop. Thirty mg is the upper limit for what's advised as a starting dose for PMR. Have you had a really good response to it?

Hopefully, as MB57 says, the "Aunties" will be along with the best advice, but I'd be more inclined to drop by only 5 mg. How long did your doctor say you would be on 20? If it was for a month you could consider dropping by 5 mg and if that's okay, drop another 5 mg after two weeks, but certainly after 20 mg you must drop in smaller steps.

[DorsetLady PMRGCAuk volunteer]

Hi yogabonnie,

Short answer - 30mg to 20mg is too big a drop in one go.

Recommended taper should be no more than 10% of your existing dose - so that would work out to be 3mg not 10mg!

Even two drops at 5mg each time might be too much to get to 20mg , I would suggest that a taper of 2.5mg would be a better option, maybe after two weeks if you feel okay then 2.5mg again.

Although you’ve been at 30mg which is the high end for PMR starters, which should have mopped up all your built up inflammation, you still need to reduce sensibly.

Despite what many doctors think, your PMR is not gone, nor is it likely to for a least a couple of years so there is no point in rushing things. Unfortunately they don’t seem to get that!

[yogabonnie]

Thank you. I am sure you are constantly getting this question from Newbies like me who want to GET OFF! but I am listening and will follow your advice with consent of doc...who had indeed warned me about being with this disease for a year or two or three. Thanks

[Hollyseden]

I was started on 15mg for PMR. When GCA was suspected it was upped to 60mg immediately. Was on that for just over 3 weeks, then after neg result for biopsy I was put straight back to 15mg with no ill effects. I was actually relieved to be back at 15 because on 60 I felt dreadful and could hardly sleep.

Hope your tapering goes well for you..

[yogabonnie in reply to Hollyseden]

thank you !! I think I caught this early enough so that GCA wasn't an issue and if it would have been..the prednisone would catch it. Lucky! How long were you on 15?

[Hollyseden]

It took quite a few painful months to get correct diagnosis but finally got started on Pred at end of July this year. One thing I do know about GCA is that it needs bigger doses of Pred because it can be so dangerous for your eyesight so I'm not sure if your present dose "would catch it" or if that's how it works? Our expert aunties will be along with wiser than mine.

Good luck tapering 👍

[yogabonnie in reply to Hollyseden]

thank you!

[Charlie1boy]

Hi,

For what it is worth, I was started at 30 mg for PMR, and stayed at that level for three weeks, which cleared up about 90% of the pain.

Then I came down in two week steps to 25, and then to 20mg without any mishaps. Then to 17.5mg for two weeks, then to 15 mg, when I slowed up considerably.

All I can say is that it worked for me, but as we have all found out on this forum, there is no guarantee it would work for everyone. Now, after very nearly three years I am at 4.5 mg, so it has been a long haul, and is by no means over yet!

For me, the drop from 30 to 20 does seem high. It may work, but is it worth the risk for the sake of a week or two? Dorset Lady's advice looks good to me.

Good luck

Paddy

[PMRpro Ambassador]

After only a short time on 30mg technically you SHOULD be OK to drop to 20mg although you might have a bit of discomfort for a day or two - or you might not! It is a drop used reguarly for other illnesses where similar doses are used. But like the others - I'd do it as 5mg and 5mg with a week at least between.

From 20mg, never more than 10% of the current dose - and that means 2mg at first. Whatever your GP tries to tell you.

But above all - learn to love your pred and DON'T be desperate to get off asap. You aren't heading for zero - you are looking for the lowest dose that gives the same result as you have now. Overshoot that and the PMR symptoms will be back.

[yogabonnie in reply to PMRpro]

Doc said I could taper but to go back up if i had reaction. I only have 10mg pills so decided to cut in half and yesterday went from 30 to 25 where I will stay for at least 2 weeks. before going to 22.5 (will get smaller doses) then 20.I will see him in a week to discuss and will see a rheumatologist on Jan 9 (although I swear you all know more than the doctors!) My question now..I feel just fine this morning and felt fine all day yesterday...so if the taper is too big will I feel it right away? (I have to say I am enjoying "taking it easy",,,.which i always have..but now without GUILT. !

[tgca in reply to yogabonnie]

And go for the gastro resistant coated pills available in 5mg and 10mg

[PMRpro Ambassador in reply to tgca]

Which cannot be cut! I have only met them in 5, 2.5 and 1mg - not 10mg. But I think yogabonnie is in the USA: No enteric coated!!!

[yogabonnie in reply to PMRpro]

yes. no enteric coating. and a little line for cutting with pill cutter. we SHOULD have enteric coating. UK so far ahead of USA!

[PMRpro Ambassador in reply to yogabonnie]

In that case we have the NHS to thank - they negotiate with the drug companies and say no if the price isn't right. Sometimes it delays the launch of newer things but it saves a LOT of money for the drugs that are used a lot and actually allows more variety.

[yogabonnie in reply to PMRpro]

YES!! just like Sweden. We were just talking about it and how much of a mess it is in USA with all states individually bargaining..and even all hospitals and affiliates and clinics all getting different deals and then going through different pharmacies who have different prices... and now of course you know who telling some states they can have better DEALS than others.... INSANE situation where some people have no health care. I know you all sometimes must wait to be seen... but Hooray for National Health. (I don't mean to start a fight with anyone on this site..enough of that in social media! . promise I will refrain from now on ! )

[PMRpro Ambassador in reply to yogabonnie]

It is a similar story in almost all European countries - most of them have single-funder systems.

[PMRpro Ambassador in reply to yogabonnie]

Yogabonnie: when you feel it depends. If the step down was too big, then you will feel steroid withdrawal discomfort immediately you change the dose or perhaps the next day and then it will probably steadily improve. If the dose is too low it is difficult to say how long it might take. If it is a lot too low you are likely to feel it after a day or two but it will steadily get worse. But if it is only a tiny bit too low it may take some time before you notice as the inflammation builds up. That's why we say not to reduce every week - you need to be sure it is still enough.

[yogabonnie in reply to PMRpro]

Yes I will stay at this for 2 weeks. and see. thank you.

[jinasc]

GOLDEN RULE.................no more than 10% at a time.............Once down to 20mg.

I used to pick a day when to take a drop when on higher doses ( I started on 60mg) and dropped at 5mg at a time once down to 30mg. 10mg drops where OK till I hit 30mg.

I cleared the decks for the following five days and just did as little as possible, no theatre, no restaurants and no walking around shops.

It worked, your body hates you to take anything away it has got used to........so sit the five days out and if ok or to what is normal for you. That drop was fine.

If re-action has not subsided, too soon. Go back to where you were and then try a smaller drop, say 3mg and see what happens.

Trial and error. We are all so different.

[yogabonnie]

Thank you so much. I will absolutely follow. I don't want the symptoms back...and as I am not having ANY bad side effects yet from the prednisone (on the contrary!) I realize why rush or be panicked. !

[Oldman-1]

I am warned in advance by two GP`s that big chunk drops off that Med can be dangerous as it effects Blood pressure.

[yogabonnie in reply to Oldman-1]

thanks!

[navejasjoe]

Hi Yogabonnie,

My wife's new rheumy told her that her prior rheumy, having dropped from 15 to 12.5 (17% decrease) was a big mistake. She told her that 10% or less is an ideal drop, to avoid a setback. In your case that would be something like 30 to 27 (I'm not a math major, though

Joe

[yogabonnie in reply to navejasjoe]

thanks so much. Great feedback from you all.... I will follow!

[Carrollee]

Hi yogabonnie. I was told to come down 5mgs every fortnight to 20mg (from 45mg for GCA) but I did it gradually not overnight. For example at the beginning of your fortnight you could do 29mg for 3days then 28mg for 3days then 27mg for 3days then 26 mg for three days then 25mg for the last 2days. Then if your ok do the same down to 20mg, it will take a month but you can keep an eye out for any return of symptoms and halt at any stage. Most of us have pmr well under control at 15mgs so you shouldn't get much more than a few withdrawal symptoms hopefully. Then I did 1mg per month til I got to 10mg and am now doing 1/2mg per month. Just another suggestion to add to the mix. All the best cc 🤗

[yogabonnie in reply to Carrollee]

thank you so much! I am getting so much RELIEF from these posts. I really appreciate it.

[Michdonn]

yogabonnie, a 10% is the recommended taper. I try to stay a that rate. I also will not reduce if I am not PMR pain free. Also it is not a race, take your time and hopefully you will not have any flares. Good luck on your journey, try to think positively. 🙂

[yogabonnie in reply to Michdonn]

thank you!!

[Michdonn]

You are welcome, take your time.🙂

[yogabonnie]

So in the end I did go from 30 to 25 for a week without any pain...so at the end of the week dropped to 20 and am on day 3 at 20 and have no pain. So I will stay at 20 and not drop again for 2 weeks.. must get different sized prednisone from doc. to make it 10% drop. each month ? if it feels okay. I don't suppose anyone drops all the way without a misstep??? I have HUGE mixed feelings I see the Rheumatologist for the first time in Jan and don't want to take his advice if it is ANY different from yours! "Aunties" and of course Uncle MB!!

[PMRpro Ambassador in reply to yogabonnie]

There are a few people who used one of the very slow reduction approaches who say they got to the end without ever having a flare - which is the aim of the exercise after all!

Don't make your opposition to his idea too obvious - they are fragile flowers and often get upset