I am a soon to be 58 year old male diagnosed with PMR back in June. 20 mg Prednisone was an overnight miracle. Tapered by 2.5 down to 7.5 around Aug but had problems there. Dr.(rheumotoligist) then recommended a slower taper of 1 mg every 2 weeks. (Actually I think I recommended it to her after reading this forum). Started that from 12.5 and got down to 8 last week with few problems. I went to 7mg two days ago and woke this AM with some solid discomfort. Not full blown but obvious.
Do I try to tough it out through this potential steriod withdrawal or should I go back up to a no pain level? I am fairly uncomfortable and would hate to get worse.
Should I go back to 8 and hold for 4 weeks plus or up to 9 to knock this down solidly?
I have read many posts here recommending slower tapers below 10 mg but I was doing well and would love to get off this stuff and it's side effects.
Reduction is NOT relentlessly to zero - it is to the lowest dose that manages the symptoms. That sounds to be 8mg for you at present.
You have a choice take enough pred to be comfortable - which is the idea in managing PMR - or stop taking it altogether and accept the pain and stiffness. because there is no point not taking enough pred because then you have side effects with no benefits.
Go high enough to stop the pain - and try 8mg, if that doesn't work, 8.5mg.
WOW that is some reduction from 20mg just 7 months ago. Suspect you are very close to maintenance level. Eileen advice is sound - go up for a week or so and reduce slower - best of luck. We all are not that happy with the side effects but it's better than constant pain.
Thanks for the suggestions. I will go back up and try that for a longer period of time. One other quick question - are headaches a side effect of the prednisone or steriod withdrawal. I started having headaches almost daily about 2 weeks ago. Sometimes waking in the middle of the night with one.
What sort of headaches and where? Anything else along with them? One in six patients with PMR go on to develop GCA and that is something you must always keep in mind. PMR may be on its own or it may be the early stages herald of GCA.
Pred can cause headaches, yes, but it is less likely to be that if you didn't have it at higher doses. You are also at the stage where your body is needing to start to make cortisol itself - if it isn't happening that can contribute to feeling unwell. That is actually the primary reason for the very slow reduction below 10mg.
Believe me, we all want to be off pred, especially at the start. When you've had problems and flares and things you become more attached to pred as the thing that will provide a decent quality of life. After my experiences a couple of years ago getting to 10mg was wonderful and I'd have happily stuck there. I managed 5mg and if I had been told I had to stick there for life I would have taken it. 4mg is OK, 3mg is not. That is fine.
The headaches are generally "behind my eyes", not debilitating, just annoying. They go away with ibuprofen. What has concerned me is the frequency and waking in the middle of the night with one.
If I were you I think I would ask your optician to check your eyes - not because I suspect anything nasty necessarily but to be on the safe side. I would be far more worried if they didn't go with ordinary painkillers but pred can lead to various side effects and raised eye pressures is one, although that doesn't usually cause a headache. They can also see if there is any problem with the blood supply to your eyes and optic nerve.
LO Peter. As is the norm Eieen has given sound advice, I would just like to add that you are on a Loser if you try to rush. the temptatoin is allways there to reduce to fast. I have taken all my info off the 3 main forums.I am now down to 5mgs reducing by 1/2mg over weeks.I was tempted to try for 4/1/2 but with winter& holidays coming up i am stopping at 5 at least untill the NEW YEAR.All the best for your journey.Dave
I also was diagnosed in June and (after one "back to start do not collect £200!" am down to 15mg from 40 and battling to follow Eileen's advice of a slow, tapering reduction to 12.5. In the past two weeks have only had two 12.5mg doses - with a week in between of 15 - but just when ready to go down for the third time, yesterday my neck and shoulder pain was back. So didnt reduce. Am not sure if this is a flare? Do flares go hand in hand with increased stress? I sold my home of 35 years last week (very emotional and traumatic) and now have two months to move homes.
Eileen, would you suggest I postpone the reduction from 15mg (also have 20 hour flight in two weeks when I go to England for Christmas)? When
in England I will get a store of 1mg preds so that I can try a slower reduction. Just so disappointed this has happened - 12.5 was a beacon of hope.
Meanwhile, Peter, am SO envious in the same time span you are down to 8mg. Well done.
Yes - stress can even be the trigger for PMR it seems at least. It isn't just stress but it definitely is one factor.
However - since 15mg really should control PMR why not look for a Bowen therapist when you are back in the UK (I.m being a bit sceptical about there being one in Zimbabwe). Myofascial pain syndrome and just generally tensed muscles can mimic PMR pain. I imagine though that you will find a physio/massage person in Zimbabwe and they can sort out spasms in muscle too.
Thanks so much Eileen for your always inaluable advice. As you say, sure not a Bowen's therapist in Zim, but will investigate what is available. Meanwhile, will stick on 15mg until after my UK trip.
Thanks to all who responded. I am back at 8 mg and feel pretty decent. I am trying to slowly move the time I take it to early morning after reading other posts here. I have been taking mine around 6 PM which appears to be the worst time. My recent blood work came back with a Vitamin D deficiency and the Dr. prescribed some pills for that????
I will attest to stress also making a difference. Not sure how to control that but if I was taking a 20 hour flight anyhwre I woudln't be trying to reduce. :-)
Hi Eileen - just picking up on your stress comment. The last couple of days have been very stressful - as the Academy, I'm Chair of Governors at, has had another Ofsted Inspection and we have also been in Special Measures since last November, I have noted the odd aches I used to get a few months ago have started to come back, nothing in the region of pain, but slight stiffness along with the ache in the mornings. It usually improves as the day goes on and by evening time am generally free, suspect when the preds have fully kicked in? The reason I mention this is my PMR started back in June just after another very stressful period when I had to sack the Head and there was a lot of 'blood' around the school Maybe I'm associating the two event with PMR but I'm mindful that stress is/could be a factor in my case? Everything went thru' smoothly with the slow reduction from 11 to 10 and have been on 10 for nearly 3 weeks without any problems until yesterday.
You should have been told to take your pred as one dose as early in the morning as you can manage reasonably. Research has shown 2am is the optimum for the ordinary white pred tablets to minimise morning stiffness - they have even developed a formulation that does it for you without getting up in the middle of the night. Needless to say it isn't available on the NHS for PMR! Moving it from evening to morning shouldn't actually be too difficult - just take an evening dose on one day and take it in the morning the next. It won't do any damage and you'll probably just have one very good day!
Probably 90% of the UK population is vit D deficient these days - and it can mimic PMR. It should be ruled out as part of the diagnosis of PMR - so better late than never.
No - because your overnight miracle with pred wouldn't have happened if it had just been vit D deficiency. But it could be compounding problems and could be causing other problems.
Vit D deficiency is found in many autoimmune disorders but it isn't known whether it is cause or effect. Of course, since they now acknowledge that the levels they have said were OK for years are not - you'll find vit D deficiency in almost every disease you look at! But if you were low now after the summer - just think how low you could have gone by spring ;-)