Hello everyone, a bit worried about what to do next, started on 20mg pred in November 2021 was also on Meloxicam 15mg, inflammation markers were at 49 following a blood test, all pain everywhere went on day 1. Blood test after two weeks, inflammation markers down to 17 which is considered normal. Told to reduce to 15mg pred and half Meloxicam to 7.5mg after 4 weeks, had a return of symptoms (niggles), told to stop Meloxicam and increase back up to 20mg pred. No change in symptoms, i.e. still have niggles. Had another blood test, inflammation markers now at 29, Doctors have told me to manage when I reduce myself, armed me with pred at 5mg, 2.5mg and 1mg, I am worried that I am already on 20mg and still have niggles, surely then as soon as I reduce to say 18mg my symptoms will only get worse because they are not gone at 20mg, can anyone advise me please?
When should I start to reduce pred: Hello everyone... - PMRGCAuk
When should I start to reduce pred
Just to clarify - how long have you been on 20mg this time? ..if it’s more than 3-4 weeks and inflammation markers are still rising then your doctors are being very lacking in care.
about 6 weeks
Then your symptoms should be under control… are you treating yourself as a sick person, or trying to do too much?
Have you seen a Rheumy or can you get a second opinion?
You have nothing on your profile to say where you live…if in UK someone may be able to recommend a Rheumy.
You do need better care, and I certainly wouldn’t be reducing in the immediate future. ..in fact you may need more.
Hi and thank you for your message, my Dr hasn't mentioned a Rheumy, I have seen no-one else, I live in the Midlands UK and I don't think I am overdoing it, nothing too taxing on my body and taking my time when I do anything, I could live with the niggles but its the idea of reducing that scares me, I feel it will only bring on a return to more symptoms, I will take your advice and not reduce anytime soon, do you think there is a change that my niggles will eventually go away leaving me able to reduce though, don't want to stay on 20mg permanantly 
Trouble is your “niggles” may not be the same as others, so it’s a bit difficult to be specific about how much notice should take of them….Can you explain them a bit more clearly, I know that’s not easy, but what I’m trying to decide is - are they PMR or something else…..
You won’t be on 20mg permanently, but as you suspect if it is PMR, then you want to get it better controlled before you reduce.
Sorry to keep asking questions….and agree with PMRpro’s comments - is it something else?
Hi DorsetLady, wish my Dr paid as much attention to me as you do 
my niggles are a return to a bit of "recognised" restricted movement in my left arm, it's hard to put into words, it feels like the same pain I had when I couldn't really lift my arms without pain but the pain itself is 80% reduced, does that make any sense? A bit pins and needles slightly too, i.e. reduced sensation in left arm
Yes it does make sense….
If it’s only one arm, would query if it could be something else, shoulder arthritis, rotator cuff injury, rotator cuff bursitis….
Some studies say more than 70% improvement should be expected…..
Pins and needles can be PMR, but again it’s one-sided….
So I think I might be looking at an issue in that shoulder/arm….and painkillers or topical gel might help.
Really appreciate your reply DorsetLady, I will take your advice and think about my first taper thereafter, soon after
So far so predictable. Your niggles maybe because the body doesn’t like being messed around. Some people do need 25 mgs to settle inflammation. I waited 6 weeks before my first taper. My diagnosis was a long time coming. I felt great for those 6 weeks on 20 mgs. I like your doctor’s trust, it’s gold dust. However, there is a fine line between trust and abandonment.
Thanks Jane, I told my Dr about this forum and how brilliant it is, sometimes I think they don't like it if you know about your condition, so it kinda felt like he was saying well if you know what you are talking about, then you manage it, he wasn't disagreeing with anything I was saying but I don't think he liked that I was saying it if you get my drift, they are so ego driven some of these medical people
I know, I know. You’ve got us.
Actually saw this today - thought it very apt on this forum -🤣😂
Substitute: "Members of the PMRGCAuk charity forum ..."
Yep…😉
Well you will have learnt one thing here that was obviously beyond him: you do NOT reduce the dose by 25% in one go!!! Why did he put you on meloxicam - it really isn't advisable to take NSAIDs alongside pred, and it is mentioned as a "not advised"in the 2015 Recommendations for the management of PMR. And then there is the plain fact that NSAIDs almost never work in PMR and have a load of their own unpleasant side effects.
The usual approach is to keep the patient at the starting dose for 4-6 weeks until the symptoms are well controlled and the blood markers are on their way down to normal range. Some doctors these days seem to like 3 weeks - in my opinion far too soon. But then you need to reduce slowly and carefully - lots of advice in the tapering posts in the FAQs. If you get a return of discomfort it may not be the PMR, it may be your body objecting to the change in dose.
And what YOU think is a reasonable amount of activity may well not fit with PMR - this is a whole new normal now. But you can't stay at 20mg much longer - the longer you stay there, the harder you will find it to reduce the dose. If it is too difficult to reduce from 20 right from the start, then it might call into question what the diagnosis is.
A lot of doctors let us to get on with things as we think. There are plusses and minuses. You don’t have someone pushing you like mad to reduce as quickly as possibly on the other hand you do not feel fully supported. I must admit on the whole I think I would prefer to be able to decide on my own reductions having had total disaster at the beginning based on “bad” rheumatologists’s advice. This board is an excellent way of getting sensible down to earth advice. A lot is better than what you would get from a lot of doctors.
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