... aches and pains came again. Had ESR check and it was 24, CRP normal. Now what I'm wondering is rather than start again on 15 mg and restart taper is it okay to increase dosage upwards till I come to a reasonable level.
Also, who are the best guides to PMR, Gp's or Rheumys ? Advice from both tends to differ. Can remember when it started 3 years ago all my GP did was send me to physiotherapy and put me on some pain killers which turned me into some kind of zombie. Seemed to have very little knowledge of PMR.
Thx
Tony
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KCRoyals
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The standard advice from real experts is to add 5mg to where the flare happened. In the interests of simplicity, I would go to 5mg in your case.
How long have you been on 1mg? If it were just a few days since the aches and pains happened you might well get away with just a few days at 5mg and drop straight back to 2mg where you were presumably fine. And then wait at least a couple of months before trying again. It's such a low dose no sensible doctor will object.
The only codicil I will add is that it MIGHT be a resurgence in the activity of the underlying disorder that causes the symptoms - in which case 2mg might not be enough but you'll have to find out. But creeping up often just wastes time, a few days at 5mg and back to 2mg is quicker.
Yes, I think that is a good way of looking at it. And it is said every so often when it sounds to some of us as if it wasn't JUST overshooting the mark. There are a few top doctors who say it.
On the forums we say to stop reducing as soon as any niggles appear, wait a month and try again. If you have reduced and the flare in symptoms comes later, then if you are quick you can often get away with just going back to the last dose that worked. But if you have let a flare get to the stage of raised markers you are likely to need a bit more - hence the "add 5mg", rather than go back to 15mg which unless the flare was at well above 10mg probably isn't required. Why go back to the beginning and have the entire reduction process again if it isn't necessary? A lot of doctors do, thinking the 15mg is always required - and the amount of pred the patient takes increases more than it need.
It depends on why you have symptoms as well - did you reduce too fast/too far and let in inflammation due to a steady ongoing disease activity or had the disease activity been low when you were able to get to your low dose and then wake up again? If the latter is the case you don't really know how active it is - and maybe adding 1mg may not be enough. In the former it depends on how fast you were reducing - if it was really slow as we keep banging on about than you are unlikely to have overshot by much - but with some reductions plans rheumies want to use you reduce so fast you don't know where you missed the parking lot since it can take a while for inflammation to build up enough to give symptoms.
Can I ask - what is considered a "flare". Because my rheumy wouldn't even allow the word when she reduced me and I couldn't even use my arms with the pain. To her a "flare" is only when the markers shoot back up. But this is the same one that took me off the pred completely! I mean I would go with your version of events than this rheumy to be honest. To me a flare is if you are in severe pain and unable to function!
Symptoms ALWAYS trump markers - and a flare is a return of symptoms for whatever reason. As I said above, it may be because the disease is more active or because you overshot the dose you were looking for. Either way it is because you aren't taking enough pred to manage the inflammation. Nothing else.
I know there are doctors who have totally different world views about it - but none of them have got the disease!!! The point of the pred is TO MANAGE SYMPTOMS - it does nothing else, it has no effect on the actual underlying autoimmune disease process. If it did - it would provide a cure.
Your rheumy would never have diagnosed me in the first place - the nearest to raised my ESR ever got was 18, at a point where I couldn't move properly and Medrol was doing nothing much until mid afternoon even at 20mg taken at night so I could get out of bed at all. Usually it was firmly in single figures. No-one would accept 18 being excessively high. Switching to another form of corticosteroid gave me the 6 hour miracle again. There is no evidence anywhere of anything besides PMR - except to ramp up the ante to GCA affecting from the jaw down so no real cranial symptoms.
Have to agree with PMRpro, and she certainly is the expert with relation to flares with PMR. Plus she gives a lot better guidance than either most GPs or Rheumies!
You would expect the Rheumy, as the specialist, to give better advice, but it ain’t necessarily so! They seem to want you off the Pred ASAP, which as most of know is not a good idea. A good sensible, caring GP may be better in the long term - I found that to be the case.
Didn't work with me. After a flare just after getting off Pred, I tried increasing gradually. No effect until I got back up to 17.5mg! More recent flares I just hit it with 15 and then drop back quickly, that works for me.
Well, upped to 5mg, even though my GP suggested to go back to 15. Eased most of the pain and stiffness. Went to apptmt with my Rheumy and he nearly threw a fit. He wants to treat it as steroid withdrawal. Now I'm going to get down to 3mg and he then wants me to have a blood test at exactly 9.00am. What's all this about hymn sheets.
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