Should I up the preds again?

[Griggser]

Latest bloods show crp now 17 which is up from 10. I had increased the preds from 12 to 15 when crp was 10 so now unsure what to do. Still in quite a bit of pain. I have an appointment with the rheumy on the 26th August so should I wait until then before doing anything?

[Linny3]

Everytime I start getting more painful and stiff my dr. ups me to 15mg for 2 weeks and then I start tapering down from that. It helps a lot. It has gotten so that i just do it on my own when I need it. You have to do what you are comfortable doing and take into consideration what your dr. says to do. I am glad I finally learned that less pain is all about taking prednisone. I fought that for about 8 months. (pretty stupid) I have decided not to be afraid of it anymore. I will just have to deal with the sided effects as they come.I was always so concerned about the side effects and trying to get off of it that I simply didn't take enough to get the kind of relief I have now.

Good Luck and take care

Lin

[HeronNS in reply to Linny3]

I hope you don't mind my suggesting that if your taper was slow and careful enough you wouldn't need to keep going back up to 15 mg.

[Griggser in reply to HeronNS]

HeronNS thanks for your reply and any suggestion is helpful 😀 I upped from 12mg on the 10th of May to 15mg and it has not made any real difference. Although I was not following the DSNS method I was certainly not rushing the taper. I do find it really difficult to judge if the drop of 1mg at a time has made a difference and probably do get fixated on well it's been a month or 6 weeks at the new level so it must be time to drop again. At the moment I can't even consider tapering, more a case of increasing. If I do increase, what to is the question? Quite fed up with constant pain. I also recognise that I do still try to do stuff and maybe push myself too much. I do like to be active with DIY etc. It's a very difficult area for me this tapering lark as I'm not good at listening to what my body is saying! I've tried keeping a diary of how I'm feeling and linking it to the level of pred I'm on but soon lose interest.

[Lizwillis in reply to Griggser]

Hello Griggser, You do seem to be going through it again. I was just wondering whether, as I think was suggested in a previous post, your pain might be because of something else. I think ankylosing spondylitis was mentioned as a possibility. ( not sure I have spelt this correctly) . Have you asked yet about this or will you wait till you see your Rheumy? I now know some of my pain is attributable to problems with my shoulders, hips and back, some of which can and will, hopefully, be fixed by surgery. Still have other pain and the deathly fatigue which is not to do with these other mechanical things. So, still have either PMR still or Fibromyalgia ( my Rheumy suggested suggested this). Just really suggesting it might well be worth asking about another cause for your pain alongside PMR. Good luck and let us know how you get on.

[Valnvaughan in reply to Griggser]

I would like to add a thought. I have had enforced rest due to hip replacement. I have managed to taper easily using DSNS. First from 10 mg to 5 mg Pred before op from Feb to May this year, and since op in May from 5 to 3.5 mg. Is more or less total rest an aid to reduction?

[PMRpro Ambassador in reply to Valnvaughan]

"More or less total rest" is perhaps a bit far because that won;t do your muscles any good at all - but yes, it isn't just the pred, you have to do your bit too and institute lifestyle changes where possible. I have problems reducing the dose and there are a few factors involved there but I have no pain and very little stiffness so live well - because I avoid anything I know will cause me to suffer afterwards, mainly housework I have to admit!

Some gentle exercise or less gentle after a long slow build up is useful - it really does help a lot.

[Linny3 in reply to HeronNS]

I thought I was going slowly. 1/2 mg every month. What I found is anything under 10 brings on the flare no matter what I do.

[PMRpro Ambassador in reply to Linny3]

That is probably "your dose" for now. It doesn't mean you won't get lower - just not yet. It doesn't matter how slowly you reduce the dose - you will not get past the endpoint: the lowest dose that manages the daily inflammation as well as the starting dose did.

[PMRpro Ambassador]

You should get the GP to check the CRP again before the end of August - preferably at the end of July at the latest because if you leave it you may end up in a real full-blown flare and struggle to get it under control. If the CRP is still rising it means you need more pred to manage the inflammation. It IS possible this isn't PMR and that is something to discuss with the rheumy - but in the meantime you also have to remember there are two causes of a flare: one is reducing the dose too far with stable disease activity and the other is an increase in the disease activity which means you may need to raise the dose to cope with it. If the CRP is rising and you have already gone to a higher dose - then there is unmanaged inflammation somewhere. If the PMR symptoms are worse and you don't have a chest infection (for example) then the evidence is that it is due to the autoimmune disorder, whatever it is.

It is difficult to over-emphasise just how much pain management is a combination of enough pred AND lifestyle management. Both are essential and listening to your body is the way to a happier life when you have PMR. Ideal just now would be an immediate appointment with the rheumy so they can see the situation. But I doubt that is an option in high summer with the NHS in the state it is in!

[Griggser in reply to PMRpro]

Thanks PMRpro all great advice as usual. I have been seeing the rheumy privately but am off on holiday tomorrow for two weeks, so not able to get in quick. When I get back from holiday I’m on jury duty, which I’m not really looking forward to. I guess that will stop me from doing much but sitting down for long periods aren’t great and having to concentrate and follow could be a challenge. Let’s just hope I don’t get called much😃

[PMRpro Ambassador in reply to Griggser]

You can get out of it - pred can affect judgement. I wouldn't hesitate to dodge my duty!

[Primarose in reply to PMRpro]

That's quite right PMPpro, I was called for Jury Duty in April, I filled in the forms for an excusal and received a letter of conformation of such. They did not ask for a doctor's letter.

[PMRpro Ambassador in reply to Primarose]

Oh - that's interesting. I'd assumed a line would be called for.

[Primarose in reply to PMRpro]

So did I. I just filled in the form stating the reasons and expected to told to produce a doctor's letter.

[HeronNS in reply to Griggser]

I was excused from jury duty because of being on prednisone - at the time I'd just started and believed at 15 mg it would affect my judgement. Beside I was likely to fall asleep during the proceedings! Another country, but same procedure to get excused.

[Hidden in reply to HeronNS]

Jury duty! Tough one that! Never been invited myself! Too late now!

[HeronNS in reply to Hidden]

I always wanted to do it, but the timing just wasn't right, and now that I've been given the medical excuse I will never be called again.

[Hidden in reply to HeronNS]

I'm not sure how this is done now days & how people are selected. Seem to remember it was difficult to get out of in the past!

[HeronNS in reply to Hidden]

It is, unless you are ill, or have some sort of necessary commitment you absolutely cannot get out of, like caring for a child or another family member, I think. Workplaces have to give you the time off to do jury duty.

[Dream21]

I always check with my rheumatologist first. I make an appt. and request a blood work test.