I was given the diagnosis of PMR by a rheumatologist at the beginning of June and started on Prednisolone with the following tapering programme on the 7th June.
30mgs for 1 week
25mgs for 1 week,
20 mgs for 1 week
15 mgs for 1 week and then see the GP to follow-up. I also had blood tests during this time.
The first 2 weeks were wonderful and more or less totally pain free but by the end of week 3 and into 15 mgs I was having increasingly difficult mobility problems but no were near as bad as before medication. So on 1st July at GP appointment I was advised to back to 30 for 1 week, 25 for 2 weeks, 20 for a month and then it will be reviewed and I will be due to see the rheumatologist again about the same time.
I have followed the advice but Needless to say since then I have read everything I can get hold of to try and get a better understanding of what is happening and is this the right course of action. I am not convinced. I think I was probably started on a higher dose than is normal, I weigh 50 kgs and have read about correlation of weight and dose in some studies.
Also I was under the illusion I should be totally pain free and reading this wonderful site I realise most people manage a balance of steroid medication and acceptable level of pain. I have learnt about withdrawal symptoms as you drop a dose. More importantly I have been horrified by the side effects of long term use of steroids.
I am in a quandary and would value any insight you might have as to my way forward. I think I should have persisted at 15 for longer but hindsight as we know.........
Many thanks in anticipation Judyliz
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Judyliz
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My initial reaction would be too fast a taper in time, and once at 20mg by dose as well.
Most patients at the beginning stay at one dose for at least a month, and then only reduce so long as blood tests are ok (that's assuming their blood markers do show the inflammation present - some people' bloods don't rise whatever).
You do seem to have started fairly high, which is maybe why you were directed to reduce so quickly - a new thinking maybe?
I guess you're on 20mg now, so I would stay there for a month, rather than 2 weeks, get your bloods checked, then reduce to 17.5mg - so long as you have uncoated tablets they can be cut. Stay another month, check bloods if everything ok then try 15mg. Although nobody wants to be on Pred longer than necessary, you must make sure the inflammation is under control before you even consider a reduction. Otherwise, you'll just end up in the same yo-yoing situation.
Also suggest once you get to 15mg ask doctor for 1mg tablets as well, and then you can reduce in 1mg steps.
If you are totally pain free, then you are the exception! Most people still have some aches and pains, but feel well enough to get on with life, although fatigue is a problem - a side effect of Pred and a symptom of PMR - so a double whammy,! But most of us learn to adjust, as you will to, but it does take a while to get your head around it. Take care.
Just to clarify, rapid reduction to 12.5 or 10mg from a high starting dose isn't new thinking! The slow reduction applies in PMR to getting below this dose, and also to many cases of GCA, who start on 60mg a day.
Thanks for that info. Haven't personally come across anyone who's followed this quick method. My next question - is it successful. Thoughts would be not particularly otherwise we'd all be following it! Still, as has been said before, we don't get the success stories on here.
There are many people who cannot cope with that size of drop - yes, the slow reductions were originally suggested to get below 5mg, then 10mg, but we also soon realised there were people who struggled at 20mg with 2.5mg drops, never mind 5mg ones.
US experts years ago recommended a reduction should be not more than 10% of the current dose - and that makes 5mg drops far from ideal at any level below 30mg/day. At 20mg it is 2mg, at 15mg 1.5mg - and it makes life so much simpler to do 1mg at a time. After all, 1mg every 2 weeks that works is the same as 2mg a month - and far faster than trying 5mg at a time and failing spectacularly, ending up yoyoing which is by far the worst thing you can do.
The usual starting dose for PMR is 15mg (sometimes 20). Most patients (but not all) are kept on 15mg for 6 weeks or however long it takes to hit the inflammation hard. The steroids don't cure anything - they treat the inflammation causing all the pain, but they don't cure it. There is still no cure for PMR and no known cause either.
Once the inflammation has been properly stamped out then the reductions begin. The idea is to find your lowest effective dose. It isn't a straight journey, reducing steroids to zero and it definitely isn't a race!
You will find there are several reduction plans around but they are all the same in one respect - that the slower you reduce, the more chance you have of a smoother journey. Too fast or forced reductions generally end in tears - it is the biggest cause of flare-ups (when the pain overcomes the steroid dose) and is a pointless procedure anyway - if the steroid dose is too low, you still have the side effects to cope with but you are not getting any of the benefits.
I hope this helps and do tell us which side effects bother you most? We might be able to help with that knotty problem too.
Thanks for you post, and your dilemma is very close to my heart.
With the usual disclaimer that I'm not a medic but can only speak from similar experience, and from following the many expert inputs here during my past 12 months of PMR. So, here goes:
1. It would seem that some GPs (and, possibly, even some specialists) possibly prescribe a relatively too-high an initial dosage of the Preds in relation to the optimal management physiological symptoms of PMR. My guess is that this could be a precautionary measure in case of the more serious possibility of GCA (which, as you might know, can have far more life-changing consequences). This was my experience when started on 30mgpd by my GP, but 3 months later advised by my Rheumatologist that I should have started on 15. Mmmm, and I agree with you about the yo-yo effect.
It seems that the higher starting dose of the powerful Prednisolone medication for managing the crippling PMR symptoms, the longer it takes to reduce without risking dangerous side-effects if reducing by too much and / or too quickly. So, it's like walking a physiological / psychological 'tightrope' in terms of getting the dosage reduction pattern 'right': both to keep the worst of the PMR symptoms at bay and avoid the equally nasty withdrawal side-effects of over-doing the reduction process. Many here will relate...
At the same time, this might just be down to a relative lack of knowledge by both some GPs and some Rheumatologists (?!) about what is an appropriate starting dose of preds, if only to gauge their effect on the initially crippling (for many!) symptoms. The 'appropriate' starting dosage in a patient's personal context will vary. So, it seems to be a catch-22 for even the best / most dedicated of the medics.
2. Either way, from my sometimes precarious experience of pred reduction (and all of the expert wisdom gained here about the science / process), your prescribed 'plan' seems to be far too much, too fast. I'm sorry if this is disappointing to hear (in terms of wanting to trust the professional advice you have been given), but I'm sure many others on this forum will support this view - and supported by evidence gained from some leading research studies. You might want to trawl through the 'topics' section on the forum to learn more.
As for feeling wonderful initially - yes, you do (as do many of us)! But, be cautious in that the preds are a very powerful drug that, although seeming to 'magically' cure the condition initially, they only mask the symptoms of it. The long-haul is about living with and adjusting to the symptoms of both PMR (a chronic auto-immune health condition) and also adjusting to the major side-effects of reducing the steroid dependency / withdrawal symptoms which manage it in the meantime. It's a tough equation physiologically and psychologically, but there is often light at the end of the tunnel.
Sorry to hear you are having worries about prednisolone. As someone who has been on the prednisolone yo yo, not so merry go round for pmr/gca for several years now, it seems to me that even the doctors have very different ideas about what is the best way of treating these illnesses. I live between two hospitals (each an hour away) and depending on where I am taken when I have a gca flare up I get very different instructions on dose. This forum is fab. Lots of people have good advice,as someone else has said trawl through and get as much information as possible. As you will find, patience will be your friend and help keep your stress levels down. Take care.
The problem here is not your rapid reduction because this is acceptable in the early weeks. Your body is not dependent on the steroids. The problem was with your gp putting you back up to 30. You should have gone back to the last dose you were comfortable on. Now the rheumatologist is going to be really displeased and frustrated to discover that you are on the same dose you were on when he or she first saw you. Any gradual reduction plan applies to the middle and end of a course of treatment. I recommend that you try to get in touch with the specialist by phone (probably speaking with a secretary ) and explain what has happened and that you need some advice. If that draws a blank have a chat on our helpline 0300 111 5090. Good luck!
I too have been a yo yorer for the past 7 months. I started at 30 and took several days to get relief, which I read is unusual. I too quickly reduced on the advice of dr and then had major stress with death of my mom. I am supposed to be at 20 for a month but have terrifically sore trunk if I do. If I stay on 22 all is well.dr says those small increments don't make a difference, any response? I will be reducing a month at a time now, also since I am on still such a high dose does that mean the disease is going to take longer to run its course? I read all posts everyday and you all are such a blessing to me. Wish I could be more helpful for others,😘😘
Of course 2mg can make a difference! And you know this from your own experience. How dare he/she deny your experience. Even 1/2 mg can make a difference!
Your big dose won't effect how long you have PMR. It has a will of its own.
The pred has no effect on the disease process - it is merely managing the symptoms until the underlying autoimmune disorder goes into remission on its own. That may be a couple of years if you are lucky - I've had PMR for 12 years and it hasn't gone away at any time that I'm aware. It certainly hadn't in the first 5 years when I wasn't on pred at all. You can't really know while you are on pred but the autoimmune bit probably waxes and wanes - and you may be able to reduce the dose during a waning period but then may have to increase again if it becomes more active.
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