I have been diagnosed with PMR since April by my GP by telephone and have since been up and down a bit with the odd issue going back to the previous dosage for a while. I finally had a face to face private appointment with a Rhumy the other day. He said to me that like many patients he sees for the first time, they have been put on a dosage and a taper programme and that I have all this pred in my system and he cannot diagnose me until I come down to 5mg and then have some further blood tests. He needed to see me at the start and not 6 months into a Pred programme.
I am currently on 10mg and feeling good. He examined me and could not find any concerning issues. He has told me to reduce to 7.5mg for two weeks then to 5mg in another two weeks. Any trouble contact him. He will then let that settle and then proceed with some blood tests. Reading the posts on here for the last few months and the problems this site has thrown up for reducing too quickly I feel I am between a rock and a hard place.
I don't know quite what to expect or how long a flare comes after reducing too quickly so I feel that I am entering a place I would rather not be. However I suppose if I want to find out exactly what my condition is I have to follow the experts advice.
My question is, is this the normal procedure a Rhumy follows with a new patient who has been on pred for around 6 months and how long does it take for a flare to build up and become noticeable? As usual thanks for all the help for a relatively new member.
Written by
Gunflash
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It is something that is becoming more common - I have to say that I think it is time someone sorted things out so that patients could be seen by a rheumy in a video-call within a month of a putative diagnosis of PMR and the required tests done through the GP before a short f2f assessment but since that is increasingly difficult even for the so-called medical emergency of GCA I don't see it happening any time soon for PMR.
Once you go below the dose you currently need to manage the symptoms then you will get a break through of those symptoms. If you are reducing to allow the doctor to see the symptoms of which you are complaining, then quickly and large steps are a very different thing - it is a reduction not a taper to find the optimum dose for you. If you reduce in a large step you are likely to experience a reaction simply because of the change in dose - that will improve over the following week or two. If it is a flare because you are now at too low a dose then the symptoms will steadily get worse.
At least he has told you to stop at 5mg - but I wouldn't hold my breath about getting an exact diagnosis. The rheumy I saw first had every opportunity to do what yours wants to do - but he put me on a rapidly reducing taper of 2 weeks each 15/10/5 which produced a typically PMR-like response in 6 hours, the symptoms were back in full force 6 hours after missing the first 5mg dose. All the other tests he'd done drew a blank - but he still wouldn't have it as PMR.
Flare can take anything from a few days to a couple of weeks to materialise...and usually takes the form of symptoms pre diagnosis - but not always. If you feel unwell, keep a note of what so you can explain to rheumy if required.
Yes I had a Rheumie that made me go to 5mg very fast....oh dear, couldn`t get out of the chair for pain....his reply was....it`s not PMR if you get pain when lowering!!......needless to say we went our separate ways!.....
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