My CPR at diagnosis was 93 and a GP prescribed 15mg prednisolone. After 3 weeks CPR 53, continued 15mg. At 5 weeks I had another blood test so that the result will be available to the advanced nurse practitioner for a telephone consultation in 2 days time. That gave a CPR of 13. My symptoms are well controlled as far as the pain and stiffness go although sometimes I still feel generally unwell. I want to be prepared for the discussion and would appreciate any advice about what to expect, how to respond and questions to ask. I am in the East Midlands of the UK. Although my medical records show that updates of treatment have been referred to a GP, not the one who did the diagnosis, I wonder if it is normal for this stage of my treatment to be handled by an advanced nurse practitioner? I have quickly learned I need to manage my progress myself as if I had not booked blood tests myself and asked for prescriptions to be issued I would have simply run out of tablets after the first 3 weeks. Happy New Year everyone.
Tapering regime for beginner questions: My CPR at... - PMRGCAuk
Tapering regime for beginner questions
ANPs are often preferable to GPs for ongoing management of a chronic disorder - and there are people on the forum whose ANP would notice symptoms, order a blood test saying they expected them to be raised. And they were. They tend to listen to the patients and appreciate the aspects of living with a chronic illness.
When you say you sometimes feel generally unwell - does that tend to relate to what you were doing or eating in the previous few days? Have you noticed>
With a CRP like that - why on earth did the GP not start with 20mg pred - would have got a faster result!! It was pretty high, signalling a hefty amount of inflammation.
Thanks for the re-assurance regarding ANP. I don't know why the GP started at 15mg because it was all new to me and a complete mystery. I am keeping a simple note of progress and it is sometimes 2 steps forward and 1 back. On one occasion I felt too much activity had set me back the following day however playing 90 minutes of doubles tennis and having a pint with my friends after leaves me feeling well afterwards. I do feel after exercise though that my hands are almost trembling. The same happened after a stressful telephone call. Could this be something to do with the effect of the pred on my adrenaline system?
A sign you have overdone it probably. PMR affects your muscles' ability to cope with exercise - you need to pace and rest appropriately or they get overtired. After being on pred for a couple of months your adrenal glands are less able to produce spikes of cortisol to cope with stressful situations - or physical exertion. But actually that can happen even with just PMR - I had PMR without pred for 5 years and I can remember being in tears after a client had a meltdown at me on the phone - he'd got in a hole with a deadline and expected me to dig him out of it! I can't do magic!!! So it isn't only one or the other which it can be but sometimes it is both. If you are coping with 90 mins of tennis, fair enough, but I'd say it is a lot.
A lot of doctors think they MUST use 15mg to start - even sometimes try to tell patients they aren't allowed to use more which is rubbish. A bit of clinical acumen is demanded!
Did your GP organise a Dexascan and also prescribe vitamin D and calcium for possible side effects of pred? The mantra for PMR is rest, rest, rest. The Pred does not cure you, it merely alleviates the pain.
No, no Dexascan but lots of blood tests. I was advised to buy Folic Acid supplement. I was only just in the acceptable range but they wouldn't prescribe. I am having a hard time accepting I must rest. I have a ski trip booked in 3 weeks. It has been booked for ten months.
Have you just been prescribed folic acid or have you been prescribed something else such as Alendronic Acid? You should ask for a Dexascan. They are a bit like gold dust in a lot of areas so worth getting on the waiting list.
No, only advised to buy Folic acid. Do you think my bones are at risk already? I have had PMR for about 2 months.
It happens over time so you won’t suddenly get osteoporosis, but you don’t know the state of your bones now of course. In fact my bones seem to be pretty good, so in fact you may have no problems at all. That is why you need a Dexascan to check the state of your bones.
Hi.Welcome to the group no one wants to be a member of if you get my gist.
As it is very early in the morn will respond quickly but a dexa scan is really important to have early on so you have a base line of what state your bones are in now ( hopefully healthy) so that you can monitor the effects of pred down the line on your bones.
Best wishes.
Some doctors believe the greatest loss of bone density happens in the first 3 months - but in the case of GCA that is when the patients are on very high doses and is less of an issue with PMR. The main reason for an early dexascan is to have a baseline - and to rule out that the patient already has low bone density/osteoporosis that is nothing to do with pred. It happens. It may also mean you don't need a bisphosphonate yet - calcium and vit D may be enough.
I skied with PMR for some years - but I was very circumspect with how much I did! I stuck to shorter runs done more often rather than a long run - the rest on the lift was an essential. I could do the same distance as a long run that way but if I tried to do the long run I was far more exhausted. I skied 3 times a week initially with rest days between skiing day - I live here so it was an option. But I loved being up the mountain and it really helped - I gave up several years ago but not actually because of PMR. I never was faced with the fact of having 6 days where I wanted to ski all day every day so can't comment on that. But I would recommend NOT skiing the way you did before - it is very embarrassing hitting the brick wall of fatigue part of the way down a run with it being a long way to the nearest lift!!!!
hi,
Others have answered your immediate query, and although you’ve posted before looks as if I haven’t sent this to you - might give more answers overall -
healthunlocked.com/pmrgcauk...
Thank you.
It sounds as though 15mg has done the trick for you in reducing the symptoms. I stayed on this dose for about 6 weeks before begining to reduce. If your prescriber is happy for you to manage your reductions, I suggest that you draw up a chart that shows a DSNS taper for each reduction in dose of no more than 10% each time. Taper the does over 4 weeks and then stay on the new dose for a further 4 weeks before tapering again.
My GP didn't seem to be concerned about CRP results once I had been diagnosed and on Pred but was much more interested in what my body was telling me. It took me nearly 3 years to get to zero but I had a fairly easy ride compared to some others which I am very grateful for.
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