Advice pls. This is my 3rd attempt coming off Pred. I followed all the proper complete slow tapers and the first two times I knew very quickly when I came off Pred that sadly, I had to go back on. (you can see my tapers on previous postings)
This 3rd attempt I stopped my last Pred on 10/8/21 and I've been feeling fine and was of course delighted, but just this week my hands have been a mess and my knees not too bright either and getting a blood test at the moment is not easy.
I'm just keen to know other peoples' experience how you actually feel when you come off Pred, should I just accept that there will be a bumpy ride?
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edithhope
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If I have read your history correctly, you were diagnosed July 2020 and that means that you have had PMR for 13 months or have I read this incorrectly?
If I have read it correctly I have not come across anyone whose PMR went into remission so quickly.
But as I (amongst others) often say - PMR comes when it feels like it, stays around as long as it want , and then goes when it choses... bit like an unwelcome guest at a party!
Many Tx Jinasc, my PMR started Feb 19 so I know I'm hoping for a lot coming off Pred by now as I've read that many people take much longer, so maybe being too optimistic!
Hello edithhope. I haven't achieved remission yet so can't answer your question. I would hope that when I am at that stage I would be pain free.This must be very frustrating for you but it may well be that you need to go back on Prednisolone. If I were you I'd be going back to my GP/rheumatologist who could initiate a blood test.
I couldn't find any details of your previous tapering regimes or the date you were diagnosed.
Do you have any previous history of arthritis? I ask this in the context of hand and knee pain.
Hi 123-go, tx for your reply. No, no previous history of arthritis, think its a good idea I try again for a blood test but only 'emergency' tests being done here at the mo. But I'll get onto it!
Sadly, I think arthritis either appears or worsens during PMR and treatment with Pred for some unlucky souls. I don’t think Pred helps it much. I understand that there are various treatments for it. I think I am in the same boat. My knee and finger joints tell me when it’s going to rain. I am very reluctant to embark on another course of strong medication when I finally get free of Prednisalone and Tocilizumab. I am more interested in the impact of diet and keeping moving, on arthritis. It is very disappointing to get a slightly broken you back after the PMR episode. The next time I finally get to Australia to reunite with my children and grandchildren, I will take a critical look at how flexible I am in the heat and perhaps give in to them and go there to live.
Tx SheffieldJane, that made me laugh as its raining!!! Probably not my Fav barometer to have but interesting none the less! Sorry your'e in the same boat to, wonder if we can move some of the OZ heat over here! But I agree re diet and keeping moving and hope you don't later have to go onto strong medication for arthritis to.
You have to remember that you are not actually taking pred so it cures something and then reducing to get off it. You are getting the inflammation all over the body under control and then tapering to find the lowest effectivedose for YOU, otherwise known as titrating. It ensures the patient is on the lowest dose that works for them and is used with quite a few drugs but usually starting low and working up but that isn;t appropriate in PMR.
Usually when you have the same problem at the same sort of dose it is your body telling you that you have found your destination. It isn't uncommon for even 1mg to be enough to keep the daily dose of inflammation at bay - and there are loads of patients who would love to be at that sort of level. Prof Dasgupta told us last year in a seminar that he often keeps patients at 2-3mg indefinitely as he finds it reduces the rate of relapses. I think that is possibly a bit pessimistic - 2mg and less is often enough and when you use the DSNS /DLtapers you can adust it more accurately. But a very low dose that you stick at longterm is the ideal - if only because yo-yoing as you are starting to do eventually goes pear-shaped and it gets harder and harder to get the pain and disability under control I have had several flares over the years - never having got entirely off pred inbetween - and after each flare, it gets harder to reduce again.
If you come off pred and feel a bit achy for a while, that is normal - PROVIDING that doesn't increase. Your adrenal function takes up to a year to get back to reliably normal but that will get better and better. Anything that appears and then deteriorates is much more likely to be the underlying cause of PMR being still active. A study from the Mayo clinic in Rochester found that only 1 in 5 patients is able to get off pred in a year. By two years a third of patients are off pred. That is blatantly obviously NOT the 2 years so many doctors claim is the duration of PMR. In fact, their study found that some 40% of patients still need some pred long past 6 years and that is something I hear from doctors outside the English-speaking world: PMR can last a long time but most patients manage on a low single figures dose of pred.
You asked practically the same question a year ago - and the comments then still apply now. You were misled to think you were on an "18 month course of pred" - PMR comes when it wants and goes when it wants. It is rarely in tune with what some doctors seem to believe.
Big Tx PMRpro, all very wise words. You are right, I'm the eternal optimist and was indeed very hopeful not to have to take Pred for longer than the 'Tapering' schedules, but looks like PMR has other ideas. My most recent two attempts at 'tapering' began again at 5mg and then 4 mgs as those were the amounts my body was fine with, then the usual tapering's. I have then been fine on 1mg (which I was delighted with) so I know I'm lucky in comparison to other peoples experiences. Its just so difficult and frustrating to decide to either go back, long-term at 1mg (when I was fine) or just bite the bullet, get that blood test (when possible!) and see how my body responds over a much longer period of time without Pred and expect bumps on the way. Decisions, decisions! But again, Big Tx for your reply.
IF 1mg does the job - then stick! If you don't there is always the risk you will be back where you started and although 1mg may feel like a talisman, if it works it soes no harm but may be doing a LOT of good.
Hi Edithhope! I am down to 6 mg which is the lowest dose I've been on since I was diagnosed and started prednisone in October 2019. I have already noticed that little things that I remember aching before PMR are now beginning to bother me ... neck, knees those kind of things that hurt before PMR. I see that my PMR symptoms are very different from the regular aches and pains brought on by age. It was wonderful while it lasted being almost pain free while on prednisone but I am looking forward to being on a very low dose like 1 or 2 mg (or zero, that would be nice!) and still being able to be active. I hope we both have good news in the next months!!
Hi Whitner, great to hear from you! Its interesting (and annoying of course!) your'e feeling more pain as you've got down to 6mg, But its a real achievement in itself to get down to 6mg so take heart. Pesky PMR can have its own agenda how quickly or slowly you taper down to hopefully 0mg and I wish you well on your journey. Other Members who have infinitely more experience of PMR & Pred than me, will give you better advice, but maybe your body is happy at 6mg for the time being and possibly slow your tapering even more from this point till you find what works for you?
On my 1st tapering attempt, it was at 4mg when I noticed I was most comfortable. I then slowly tapered down to 0 mg which sadly didn't work. Next attempt, it was 3mg when I felt the most comfortable as I tapered and I found that interesting and encouraging in itself, but that attempt went pear shaped to when I reached 0mg. On my latest attempt, it was 2mg and 1 mg of Pred when I was most comfortable on my way to 0mg, and that's where I am now.
I understand that Pred is not the enemy. Pred is an incredibly useful tool in giving you your life back, but being on steroids is not at all where I want to be long term, hence my determination to be Pred free as soon and as safely as I can.
So after after excellent advice, its decision time, do I go back onto Pred at 1mg long term and take care of myself that way, or 0mg of pred, wait for a blood test and of course listen, and respond to my body along the way? Ummmm.
Stick at 1mg if that works for a few months - and then try 1/2mg drop using one of the slowed tapers we go on about and even spread over a longer time - doing each step twice or 3 times before moving on. And then progress to zero using zero as the new dose in the taper. It is such a low dose it doesn't matter but if you CAN then zero is even better plus there is the sense of achievement. But there really is no hurry - the tortoise won the race ...
Wow Edithhope I’m so encouraged to hear you’re comfortable on 1 or 2 mg! I would be happy to get there. Yes right now I’m comfortable on 6 mg which is the lowest dose I’ve been able to get to without a flare. You keep up the good work and I will keep trying.
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