I've been seeing my rheumatologist for almost two years. After 4 months of lying on my bed in pain, he correctly diagnosed me. He put me onto 15mg prednisolone for 3 weeks, then reduced to 10mg for 4 weeks and then down to 7.5mg where I remain. I have blood tests every 2 months. They have always been "excellent" (his words). Today was no exception. He originally wanted me to stay on this dose for at least 2 years. The two years will be up in August. Today he said 3 years because by then your polymyalgia will be gone, and you can come off them immediately, i.e. no tapering. Wow, this goes against all the research, advice, etc.etc. Unfortunately, he is an assertive character and is not particularly open to discussion. So......I have some decisions to make. Here in Cyprus there are very few rheumatologists in the Paphos area. Strange though it may seem this guy is very well regarded. I had been considering a very very slow taper and I might well start doing this now, so I could get myself down to say, 5mg or below by this time next year. Sorry for the long post. Any helpful comments would be much appreciated.
Rheumatologist appointment today brings a shock..... - PMRGCAuk
Rheumatologist appointment today brings a shock......
Oh dear! It sounds as if the treatment protocol has been made up. Your dose was probably too low from the outset. The tapering is much too fast and steep. Blood tests will not show accurate inflammation levels when you are taking Prednisalone- symptoms rule. I imagine that you feel pretty awful. His prediction for your recovery is impossible for any consultant, no matter how eminent. You so, need a rheumatologist Endocrinologist or Neurologist that really understands these conditions. My heart goes out to you being bedridden for 4 months and then being subject to incompetent care. We must NEVER stop Pred suddenly without a gentle taper. There could be a devastating impact on our Adrenal function.
Can I make a practical suggestion. In Greece you can buy Medrol (16mgs = 20 pred mgs), without prescription. Cheaply! Get enough for a year’s taper, and, whatever happens, do it your way. I have had the same bullying ‘advice’ (as you have had from Drs) in UK, Malta, and Greece. There is no way I am going back to that pain and distress just to please someone who can’t be bothered to read the (academic) extracts I have tried to share with them. As PMRpro says (to paraphrase) get to the minimum dose for minimal symptoms, for best Quality of Life. If you have them in stock at home, you will be able to make the best dosage decision for you, not when your morale is weakened from not enough medication. I think the much better qualified persons on this site, who will be able to help along the way, might want to modulate such an approach, but where you are living in the world shifts the power in the Dr/Patient relationship well into your favour. For once!
You would have to cut those Medrols to the pred value you are seeking, obviously. I do it by dissolving in a syringe, and titrating exactly, then ‘shooting’ it gently down my throat with lots of Greek yoghurt. PMRpro thinks that is a bit quirky (I believe, and I would take her advice on this rather than mine, of course!) but it does mean your taper is totally precise, and it doesn’t seem to hurt my stomach or throat as it passes.
Many thanks for your reply. I will take on board what you say. I do have quite a stock of prednisolone already. It's good of you to take the time to make your recommendations.
Keep your eye on the expiry dates!
good point - fyi: my latest Medrol purchase expiry is 11/2026. They are also only 7 euros for 14 tabs giving 20 mgs equiv of Pred each tab.
Do medicines really go ‘off’ ? I have a few things in the bathroom cabinet that I have kept for emergencies like diazepam or penicillin that expired a couple of years ago but which are still packaged and dry.
Some things do yes - though liquids more than solids usually. But tablets kept in the wrong conditions - too warm, too cold (someone put tablets in the freezer, not a good idea), damp environment (bathroom and under the kitchen sink not good) can degrade more quickly. Most are likely to simply be less effective/weaker - but some can become risky to take.
nhs.uk/common-health-questi...
but a study did show that 90% of 100 medications tested were fine even 16 years after the expiry date.
Never mind the PMR (and as you know 2 years is a myth ...) - if you have been at 7.5mg for 3 years and were to stop suddenly you could become extremely ill with an adrenal crisis. As long as you are on that sort of dose the adrenal function of producing cortisol is suppressed. And it takes a long time to recover - equally as important in the tapering process as anything else!
I don't know how your system works - would you have access to an endocrinologist? If that is what the rheumy wants to do, maybe an endo would take over to finally get you off the pred. Not that there are any guarantees that the PMR will be gone by then. If it is, then yes, you would be able to dispense with the pred but not sure how the rest of your body would take it!
I'm glad I asked the question today at my meeting with him so I know what I'm in for should I decide to stay with him. I'm seeing my GP next week and I will discuss the situation with her. She's very reasonable and helpful, and I think she will be dismayed by this.
Hello , this goes against all the advice I have been given regarding tapering , I have been attempting to taper off pred since being diagnosed with PMR in October 2019 . I am now on 4.5mg and will stay at this amount for another 3-4 weeks and if OK will reduce by 1/2 mg every 4-5 weeks.I tried a faster taper when covid first started and ended up relapsing -back to square one. I believe the advice on this website has been invaluable in helping me to cope with PMR.
On another subject my wife and I are going to emigrate to the Paphos area this year and I was wondering how easy it is to see a rheumatologist and is prednisolone readily available . We have tried to find more information about the Cypriot treatment of PMR without success.
Yes, it goes against all the advice I've been given too! I would have recommended my rheumatologist but he obviously doesn't believe in tapering. Your best bet would be to sign up with a GP and then get a referral to a rheumatologist. Prednisolone is readily available here but only in 5mg tablets. Good luck.....
It seems it us not just the PMR he does not understand but also how you treat steroids.
I think you've got the right idea if you are considering starting a slow taper now (provided you feel well on 7.5 mg, of course). Hopefully, this will give your adrenals a chance to start working again, and by the time he wants you to stop, you will be closer to being ready to do so. Stopping suddenly sounds crazy to me as I can feel every 1/2 mg reduction and have sporadic episodes of nausea and extreme fatigue when I am reducing and I am doing very well.
My GP tends to be a helpful ally when my rheumatologist comes up with completely unrealistic taper ideas, so I think you need someone else to talk to. In this age of Zoom appointments, would it not be possible to see someone else, possibly even from another country, just to get a second opinion? Just a thought.
I'm seeing my GP next week, who is very helpful, and will discuss the situation with her. I do feel very well on 7.5mg but I will try the very slow taper to get to 6.25. We only have 5mg tablets in Cyprus so I will have to cut them. Thanks for your reply, much appreciated.
I waited 6 months or more to see a Rheumatologist here in Nova Scotia and when I did, I was ever so disappointed. I had read her reviews and decided to go in with an open mind. Well what do you do when she lives up to her negative reviews? She was extremely condescending. Late by an hour and a quarter. She changed the tapering schedule completely and way too rapidly from the one my temporary Neurologist had set out. Then said, "see you in 4 months and we'll see how that schedule works". They truly have no idea about PMR, nor how Prednisone affects body and mind. The only good thing was she ordered monthly bloodwork, which as we know, will appear quite normal when one is on Prednisone. So, this week I'm supposed to taper to 12.0 Mg. I've put my lower back out (don't know how) and not even the Prednisone is helping that! I would take my IB/Acetominophen cocktail, but the IB does a number on the acid. Sorry to moan, but I'm worn out. Sorry to hear you're in such discomfort. Listen to your body and slow taper. Some of these Rheumies are full of hops!
I'm sorry to hear what you've been going through. It's bad enough having PMR without having to deal with uninformed doctors and rheumatologists. I wish you all the best.....
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