I started at 20 mgs and started having a few problems when reducing past 5mg. Thanks to Eileen and Mrs. O posting the alternate method of reducing (old dose and drop to new dose 1 day a week until totally at new dose) I have been successful in getting down to 2mg with no issues. I kept to the "program" and am now at 1 and 0 mgs but for the past week or so have noticed increasing fatigue, stiffness and pain in my legs, butt, shoulders and arms. Not happy....
I read another discussion about reducing to 1 for 2 months, 1/2 for a month (I think) and 1/4 for 2 weeks. Would this be appropriate for me since I am having a bit of a flare or should I go back to 2mg.
I have the Camino de Santiago in my bucket list and really want to be well enough to give it a try next spring. Then to Italy. Maybe we'll run into you Eileen if we get that far north 
Looking for advice from my wise fellow PMR friends. Don't know what we'd all do without you.
Many thanks, Diana
Stick at 1mg for a while, 2mg if necessary - it is such a low dose it is almost negligible. At this stage the drops are massive in terms of percentage so doing them even more slowly also makes sense. For example, do each stage of taking a day out/adding a day between old doses at least twice, maybe several times before moving on to the next.
And NEVER forget: you are looking for the lowest dose that controls the symptoms, not heading to zero whatever - if the underlying autoimmune disorder is still active, you will still have some inflammation developing if you try to go below that "lowest controlling dose".
There are flares from trying to reduce with too big steps - probably NOT flares of the PMR, much more likely to be too big a removal of pred and that is the purpose of the reduction plan: you take out the likelihood of steroid withdrawal pain so when pain reappears it is more likely to be the PMR still being around.
If I get to 2mg I may stay there a very long time! After 10 years of dealing with PMR and its spin-offs I have no desire to return to the beginning. Call me a wimpif you like but 2mg of pred at over 60 isn't going to stop me living a decent life. PMR could.
ALL the Camino de Santiago? You're nuts!
Diana, I would try returning to 1mg daily for a week or so and, if no better, consider increasing back to at least 2mg. Your returning pain sounds quite widespread so could point to a real flare, unless, of course, you can look back over the last couple of weeks and realise that you have overdone things, in which case it could just be your body rebelling. As Eileen has said, each drop at these low doses becomes a higher percentage. It is also possible that you have reached a dose where you need to remain for a considerable period of time rather than just continually following the reduction regime.
I remained at 1mg for almost a year, mainly due to what I thought was sciatic pain from my hip to my foot, but I wasn't sure so didn't want to take any chances having finally got this far.
During that time, I also experienced what appeared to be a very sudden and major flare whilst on a riverside walk. The walk was abandoned and getting back to the car was purgatory, and I remember feeling so dowhearted at what to all intents and purposes appeared to be a big flare. However, it all resolved very quickly without any intervention, and I do hope you will have a similar experience.
I'm also trying to get to the "0". I was decreasing by 1/2 mg three days a week, then four, then five, etc and got down to 2mg. When I reduced to 1 1/2, I got such horrible pains that I went up to 3 and I felt great. I'm now trying to decrease again and I'm at 2 1/2 four days a week. Every time I decrease an extra day I get stiffness all over. If I was smart, I'd stay at 3 where I feel absolutely no pain but I'd love to get completely off Prednisone - if I can!
Thank you ladies for your advice. I had a pretty crazy week last week spent with my sister and our 8 grandchildren so I'm pretty exhausted. Think I'll try staying at 1mg for a few more days and see if my symptoms go away. If not I'll go back to 2mg for a couple of months and if better then I'll start a much slower decreasing program.
At 64 I don't have a problem staying at 2mg if I need to but like Angie (and I'm sure all of us prednisone users) I'd sure like to be at 0 and healthy.
Does remaining on a low dose that controls symptoms mean that I will need to continue to take it easy and/or limit my activities?
Eileen, it does seem a little "nuts" to do the Camino but my husband and I had planned to do the walk when we retired and that happened in December. I obviously couldn't make it this spring but was really hoping to give it a try next year. Walking, hiking and cycling are our favourite hobbies so it kind of makes sense.
Thanks again for the help and I'll keep you posted on my progress.
So would we all - but forcing a reduction often only leads to one end: a flare and having to go back to a much higher dose.
If the underlying autoimmune disorder is still active you will need some pred to control it. At this dose there are near enough no side effects. Is it worth risking a return to 5 or even 10mg to control a flare worth it?
If you have a busy week planned - NEVER, EVER attempt a reduction!
I don't really limit what I do at 4mg - it is more what I can manage after a few years or not being able to do stuff. If you want to do the Camino you will possibly do it better on a very low dose than without. The taking it easy bit we mean to say "for goodness sake don't over do it"!
You would probably be surprised to know how many PMR people were active and walked, climbed, cycled pre-PMR. With luck and not being silly you WILL manage it sometime. I'd lay odds though that you'll manage it sooner by not forcing a reduction.
mrs mac my experience was its ok to increase a little but its the coming down that i found important to come down long and slow ,like 1/2 a mg a time at 2 weeks a part , im off completely and no pain now , getting my life back , but you must build up your imune system , good luck
Don't forget when you come off steroids, it can still take a year or so for our bodies to get back to normal, so still give it lots of TLC, including a good diet - Manuka honey is good for the immune system.
Will absolutely take it easy and reduce nice and slowly. Thanks again and good health to all
So glad you are off the pred. You are an inspiration and enjoy having your life back.
Thank you for reminding me about the time it takes to get back to "normal". It is so hard when you start feeling good but I guess we should all take the best care of our bodies we can.
When you say come down half mg every two weeks - do you mean literally one half mg every two weeks. I think I've probablycomeoff too quickly - I reduced 3 2 1 over 3 months and now 3 months later it's all coming back. Really appreciating all the knowledg and sharing
There are two things to bear in mind here. It isn't just reducing slowly, in small steps and not too fast - if you go too fast in that sense you are likely to experience steroid withdrawal pain which is very similar to PMR pain and often panics people into increasing their dose again. We've developed reduction schemes where you spread any reduction over weeks at a time so the body hardly notices. And at any point of PMR a reduction of dose should never be more than 10% of the current dose - which basically means not more than 1mg at a time for convenience (if you start at 15mg, 10% is 1.5. Why cut tablets, use 1mg)
The second - and probably more important aspect is that you are NOT necessarily aiming for zero. I know the thought of not taking pred is very attractive but if the underlying autoimmune disorder that is the cause of the symptoms we know as PMR (PMR is not the illness, it is the signs of the illness) is still active you need some pred. And even here there are two sides to it. If you reduce too often you may miss the warning signs that this new lower dose isn't enough to contain the inflammation and keep you symptom-free and comfortable. Even half every 2 weeks may be doing just that - you haven't let your body get used to that dose and if it is just slightly too low then the increasing inflammation won't have reached the tipping point that you feel. You feel great for a couple of months - and then it hits. Big disappointment and back to at least 5mg to control the inflammation and start all over to find the lower dose that is right.
If you reduce in biggish steps you easily miss that correct lower dose. Bumping down quickly means you don't notice that you are fine at maybe 2mg on 1 day in 3 but 2mg on alternate days is a bit too low. And yes, it can be that fine a dividing line.
I'm not just saying all this off the top of my head - it is the result of collecting experiences from literally hundreds of contacts on 3 different PMR forums. We realised a few years ago that the speed many doctors told patients to reduce - often 2.5mg at a time, even 5mg at a time - was causing problems for many patients. At first we suggested 1mg at a time and it worked far better. Then a few of us tried spreading that drop over a few weeks - going from every day old dose to every day new dose took us up to 7 weeks. Doing that we got far lower than we had ever managed before. Often a sticking point is 10mg, it had been for all of us who worked out these very slow schemes, but we got to 5 with no problems. Now we are slowing down, resting a few weeks between each 1/2mg spread over weeks to see if we are still symptom-free. Maybe it has gone altogether - but maybe it hasn't and taking 2 or 3mg for a few months isn't going to add greatly to your total dose which is the significant concept. It is better than what has happened and needing to backtrack.
Thank you so much. Eileen, I only joined the forum yesterday and I feel so much more positive just hearing from other people with same problems - I shall probably have to go back on the steroids but I think I shall have more understanding of what to look for when coming down the dosage
If you get back onto the pred quickly you may well find that 5mg is enough, certainly 10mg. You also know you were absolutely fine at 5mg so can probably reduce relatively quickly. It is common for doctors to tell patients to "add 5mg" to the current dose in the case of a flare - it might work and it would save you starting all over again. There is no guarantee, "second" doses of PMR often don't bear much resemblance to the first and flares can also be a bit unpredictable. But I think it would be worth a try.
Hi Barb, I was reducing 1mg monthly from the 10mg point, having come down from a 40mg starting dose (PMR and GCA). All went well until I reached 5mg when I noticed the pain increasing. However, I continued the 1mg a month reductions as had been directed by my rheumy at a previous appointment (it was some years ago and before I knew better!) but when I got to the 3mg dose I knew that I seemed to be going back to square one and facing being bedbound again. Rheumy then increased me back to 10 with a staged reduction to 7.5 and 5mgs (the point where things had started to go pear-shaped) and then kept me there for 6-7 months. That was obviously the point where the steroids had previously started losing control of the inflammation so became a sort of maintenance dose which proved highly successful for me. I was then advised to again continue reductions at 1mg a month. However, having read of a Swedish gentleman's success after very slowly tapering from the 5mg dose which had previously been a constant sticking point for him I decided to try something similar but going even more slowly in half mg decrements on one day of the first week, two of the second, etc. I may not have needed to go this slowly but I wasn't taking any chances after the previous experience with a severe flare. A snail's pace but it worked and I came off steroids two years ago.
You haven't said how long you were on steroids for, but as you are within 3 months of stopping the treatment, perhaps, as Eileen has suggested, a starting dose of 10mg may be sufficient for you, in which case, if you can remember experiencing any returning pain at any dose along your previous reduction programme, then a dose above that should be your maintenance dose for a whle. Good luck and do let us know how you get on.
Thanks for your input. The problem is that I will have been off the steroids for 3 months on the 21st August andI won't be seeing my doc until 21st August ( he s away on hols). I m getting the stiffness in the jaw which is really worrying me and I wonder whether I should see another doctor at our surgery before then. The temporal arthritis really scares me.
Hello again Barb, if the jaw "stiffness" is only on chewing then yes see another GP asap, if necessary asking for immediate referral to a rheumatologist. Jaw pain on chewing was one of my symptoms before diagnosis. If meanwhile you experience any head/eye pain or problems with your vision, such as blurring, then A&E is the place to go.
Yes - don't wait for your GP to come back, ask for an emergency appointment. Like MrsO I had jaw pain when chewing in the early days of PMR but I never had any other lasting GCA symptoms and was put on 15mg and it dealt with it all. And as she says - any extra GCA signs or symptoms, straight to A&E and tell them your history.