Getting to the End of the Road...

[canadacando]

Hi - I'm currently on .5 mg, and on Monday I will reduce down to .25 mg of prednisone for 2 weeks, AND THEN THAT'S IT (fingers crossed). Yes, I'm apprehensive about "the end", wondering if the inflammation will just come back or if it will finally be over. I have plenty of prednisone in case I need it. For those who come to the end of their taper, does the PMR actually stay away? Or, is it just unpredictable? Seems hard to believe the PMR would just go away after all of this...😅

[piglette]

The PMR goes into remission. You may like to try zero pred for a day then go back to 0.25mg for a few days if you feel nervous about just stopping.

[DorsetLady PMRGCAuk volunteer]

PMR is a self limiting disease - so for the vast majority of people it goes into remission.

For some it does reoccur, but for most, not. However you may not be sure until you have been off the Pred for a few months - with no return of symptoms.

Be optimistic that it’s in remission, but mindful of any familiar pains returning and act on them if that happens - and also that not every twinge is down to PMR - most are down to life, and the years that have passed since you started Pred.

Just be aware that if you are in a stressful situation you may not cope as well as expected, your adrenals may take anything up to a year before they are functioning 100%.

[PMRpro Ambassador]

If it is really in remission - yes, it usually stays away although the propensity to flare up again remains and in a few people it does return for another go, But even a really low dose like you are on can be enough to combat the inflammation being caused by really low activity disease - and going to zero can be a step too far. It can take as much as 6 months for the inflammation to build up enough to be felt as symptoms. It does happen so don;t be in denial if you are unlucky. Caught quickly you can stay at a really low dose without going backwards.

Fingers crossed you aren't one!

[canadacando]

Thank you - I'm committed to being honest with myself, and have fingers crossed this will be the end!

[PipandDots in reply to canadacando]

I wish you the best of luck x I'm also down to 0.5 and hope to be saying those words soon too. Fingers crossed for us x🙏

[Wizards in reply to canadacando]

Hi CanadacandoI did the dead slow method all the way till the end.

It's been a year and I still worry that stress will bring it back and that's only because I've been under alot of stress since off.

Prednisone hid OA in my hands and chronic bursitis in hip.

Had hand operation in October and still problems, working towards hip remedies and just had gallbladder removed and hernia repair.

I won't even mention my new diagnosis of PTSD and what brought that on.

I carry pills with me. The longer time goes on I feel I've licked it.

Good luck and don't rush. It took me almost 9 years.

[Lclmlbls]

Good luck! I can’t wait to be typing those words ‘AND THEN THAT'S IT’. I’m down to 9mg so have a long way to go. All the best 🍀

[Suffererc]

I was Pred free for 6 weeks. PMR came back and have been back on Pred since September. All going well until last two weeks when .5 just isn’t doing it. Took 1mg this am to see if it makes an improvement or whether it is Arthritis. Hopefully Arthritis although I would much rather nothing. Good luck 😊

[HeronNS in reply to Suffererc]

Sounds like my experience. I hope it isn't but I ended up with a major flare in roughly the same time period as you, including time off pred and a few months at low dose (although I couldn't manage at .5) and potential confusion with osteoarthritis. A few months on, realized increasing symptoms were very much like pre-PMR diagnosis. By then CRP was also very high (for me).

Not convinced that osteoarthritis is actually better than managed-on-low-dose PMR!

[Suffererc in reply to HeronNS]

I have a problem with getting Pred now it has been taken off repeat. I have to beg the non believers (GPs) it’s a flare. Only need 1mg and seem to plod along nicely but drop to .5 and it all comes back 😊

[HeronNS in reply to Suffererc]

This is when one wishes they could walk a mile in our shoes. Why can they not understand that we don't "want" pred, we "need" it because it's our only effective painkiller? And that we will indeed taper all the way off when we're actually able to.

💗🍀

[Lonsdalelass]

Hi there! The replies you've received are great and hopefully will reassure you. I understand exactly where you're coming from and remember those feelings well.....I finally managed to come off the pred in May 2022 but it was pretty daunting wondering if I'd be OK. Fortunately in my case I've been well since......as DL says, a few aches here and there are to be expected as we're all that bit older now, so try not to worry. It won't necessarily mean the PMR is back, and before resuming pred see if painkillers work. Thats what I did and it sorted out my aches at the time. I think you just have to go for it and see, you won't know unless you try. I felt its taken a good 18 months since being off the pred (I was on it for roughly 3 and a half years) to feel 'normal' again, but as I said I think we all develop a new 'normal' after the event as we all age and then get other illnesses/conditions thrown into the mix just to rock the boat! Statins for me being one! Anyway, I wish you all the best with that final leap. You can and I'm sure will get there. 🤞

[Animalover65]

Hi, I reduced to roughly 2 thirds of a 1 mg tablet and then half a tab for 4 weeks. I could not be bothered faffing around with cutting down any lower and I stopped taking prednisolone 2 months ago. I still get some stiffness in my legs in the mornings and after exercise but it disappears . And I am also the last one to stand up from a sitting position at Yoga but I am just grateful to be able to get down onto the mat and back up again!

I have slowly increased more exercise and I notice that my muscles are getting stronger, but as others have said it takes time. I also still cannot tolerate caffeine on its own as in having a coffee without food and I felt quite unwell at Christmas when I had too many chocolates and unhealthy but tempting treats.

So good luck with the rest of your journey and fingers crossed for both of us.😊

[Polygolfer]

Well done!!! Just a caution… remission or withdrawal symptoms can be easily confused with what is called a ‘flare up’ so I’ve been advised to be patient if some symptoms return and try and see things through!

[DorsetLady PMRGCAuk volunteer in reply to Polygolfer]

Yes they can be confused, but it's the timings that count really - and whether they diminish or escalate.

[Polygolfer in reply to DorsetLady]

Totally agree!! My Rheumatologist told me to hang in there for at least two weeks unless it’s bleeding obvious the whole thing has returned again.

[Blossom20 in reply to Polygolfer]

So you're saying that if you start to get stiffness and pain while you are cutting down the pred you should wait 2 weeks before taking more pred? Seems like you're saying it's common to get pain but then it will go away.

I've been trying to get below 1mg so many times, but the stiffness and pain in shoulders always comes back and then I end up taking more pred again. Should I just tough it out?

[PMRpro Ambassador in reply to Blossom20]

We don't think so - Polygolfer may find it works for them but mostly it doesn't and people end up in a flare. Only very very slow tapering will help at this stage - 1mg is a very low dose.

[Blossom20 in reply to PMRpro]

Thanks for your reply - that's what I've understood from reading the forum. What about alternating one day on, one day off? At the moment I've been doing the slow taper, but when I get to 3 days new dose (no pred) a week the pains come back in my shoulders. I've gone back to 1 every day and I'm ok, but I'm so fed up with it. I've now developed pains in my wrists and hands( which isn't pmr I guess) and a sore left hip which has been getting progressively worse for a few months - why? I suppose everything is weak and damaged from the Pmr and the pred?

[PMRpro Ambassador in reply to Blossom20]

The hip could be bursitis - and it CAN be part of PMR or at least the PMR feeds it.

If it is any consolation - 4 to 5 years is a common duration, Some of us think that would be great - didn't happen for us!

Have you tried 1/2mg daily? The body does tend to like regular doses.

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

It’s an individual decision, but at 1mg don’t think I’d be pushing to get lower come what may. You will get below that, but if and when your PMR is happy for you to do so. Not before.

[Blossom20 in reply to DorsetLady]

Thanks, yes, but I wish it would hurry up and be happy! It's been nearly 4 years! I know I shouldn't grumble but I'm so fed up..

[Polygolfer in reply to Blossom20]

I think I’m saying it’s different for each individual and what my Rheumatoligist said was to give it a chance ( he mentioned two weeks) at every reduction unless it’s obviously a relapse. I also think it’s great that more and more people that have successfully tapered participate in this forum otherwise we get a bit lop-sided towards staying on the steroids.

Ultimately I think the forum is brilliant but you should always discuss your personal medications, treatment and choices with your doctors and then make your own decisions!

[whitefishbay]

I think PMR is unpredictable. As PMR Pro says it can be like a leaky bucket and build up and reappear. I stopped but would occasionally pop a 1/4 tablet in my mouth if I thought things were bubbling up....so far PMR has not reappeared (but now I have osteoarthritis in hands and feet. Haha). Good luck.

[LabradorH]

Hi. I hope the next stage goes well for you. It sounds like your expectations are reasonable and your question is thoughtful. I have been off prednisone for 1 month and it is so far so good. I feel a little better overall and no worse in terms of pain. If this is remission it feels like progress..

[Plains]

how many years have you been in prednisone?

[canadacando]

I’ve peen on prednisone for 18 months.

[AngusMacbeth]

Congratulations! I, unfortunately, am just starting on prednisone but I’m thrilled for you and taking heart that your victory can some day be my victory too… Thanks for sharing your story and good luck!

[canadacando]

I want to thank you all for your support and caring sentiments. May we all finally come to the end of the taper!

[Lucy2013]

Good luck. I finally got off of pred after 5-yrs (PMR & GCA). Actually, this is the 2nd attempt. I've been off now for 3-months and I seem to be okay, at least that is what the lab work indicates. I'm probably a little low on naturally produced cortisol, and that might be why I'm feeling a little more arthritic than before I was fully weaned. I plan to stay this course and finally allowing myself to get a knee replacement.

[HeronNS]

Keeping my fingers crossed for you. The comments by PMRpro and DorsetLady are spot on. You may feel a few niggles, but if you are truly in remission those will go away. You might have experienced these with earlier tapers so know what I mean. However if these minor pains don't go away and begin to bother you more over a few weeks, please don't hesitate to give yourself a pred trial. If pred works well and quickly you'll have your answer. I managed quite well returning to a low dose, around 2-3, but a few months later was in quite a bad way and needed higher dose. That is all water under the bridge now, but it was a really strong indication that PMR had never been in remission, even during the few optimistic weeks after I'd very slowly tapered to zero. 🍀

[MrsNails]

Wishing Good Luck with your Final Taper, as you get to the end don’t be afraid to go alternate days 0.25/Zero

My Mum was on long term Steroids & reduced in a similar manner, her GP supported this.

Good Luck 🍀

[canadacando]

Hi All, I thought I’d give an update on my “final taper”. I was on .5 mg for 2 weeks and then reduced down to .25mg with the anticipation that I’d stay on .25 for 2 weeks and then stop altogether. Instead, I immediately went into a flare (Within 2 days) so I had to increase up to 1 mg for a few days and now I’m back down to .5 mg. I think I‘’ll stay at .5 mg for another couple of weeks and then do a very SLOW taper mixing .5 and .25 mg as I need to until I can sustain .25 mg. I am no longer in a hurry. It is surprising how much a quarter of a mg makes such a big difference. I’m at peace with the thought that I may have to settle with .5mg for a longer time. I’ve adjusted to the idea that 0 isn’t mandatory. .5 is a good thing!

[DorsetLady PMRGCAuk volunteer in reply to canadacando]

It is surprising how much a quarter of a mg makes such a big difference.

Actually it’s not, and many on here can testify to that.

Would say that 2 weeks at any dose is insufficient - not long enough to know that dose is enough before you reduce.. so to that end I’d stay at current dose for at least a month- although longer would do no harm before you try your[ hopefully ] final taper.

[PMRpro Ambassador in reply to canadacando]

When you are this low - 2 MONTHS at a new dose is more like the mark!