El 50 -- PMR.-reducing steroids.

[El50]

I have had PMR since April 2015 and am still on 7mg. I have seen the consultant this morning who said that as I have had PMR for 2 years and my inflammation levels are low that it is time to come off steroids.This in theory sounds good news but I have been advised to keep dropping by 1 mg. a month until I come off them. I have had difficulty reducing in the past so am quite wary of the speed of this reduction and would much prefer to use the dead slow method. My next appointment is in 4 months. I would be grateful for any thoughts on this.

[DorsetLady PMRGCAuk volunteer]

Hi El50,

Another Rheumy fixated on the 2 year scenario! He could be correct, but on the other hand we do know he may not be!

Your inflammation markers should also be low if you are taking the correct amount of Pred, that's what it's designed to do, for heavens sake!

You can still reduce approx. 1mg monthly using a slower approach - such as one below, but really the choice is yours at the end of the day.

1st week - Sun & Thurs new dose

2nd week - Sun, Tues & Thurs new dose

3rd week - Sun, Tues, Wed, Thurs new dose

4th week - Sun, Tues, Wed, Thurs, Sat new dose

5th week - all week new dose

or maybe 0.5mg every 2 weeks.

You have to remember though, you are getting to a level when your own adrenal glands need to starting working again, and some people find that quite difficult, so don't be harassed into reducing too quickly.

It's your body, and you need to listen to it. If you go too quickly, it will let you know!

Good luck, whatever you decide

[markbenjamin57 in reply to DorsetLady]

Well put DL...

It seems that the issue re. 'low' inflammatory markers (but whilst on the Preds) is a source of misunderstanding - for some medics, as well as patients?

If I'm right (?): on one hand, acceptably 'low' CRP / ESR readings suggest that the PMR inflammatory process is relatively under control. On the other (as you say), if this is because the inflammation etc is only being suppressed as a result of the Preds, then the only way to measure the degree of underlying PMR / auto-immune disease inflammation accurately is to stop the Preds - and take new blood samples once they are out of the system.

But... this, in turn, would seem to put the patient at risk of intolerable PMR and / or possibly dangerous steroid withdrawal symptoms in the meantime - either of which can invalidate any inflammatory marker measurements due to un-necessarily increased inflammation and / or (more seriously) an adrenal crisis as a result.

If my understanding (above) is correct, some GPs and Rheumies just aren't up to speed with this in context - and some PMR / GCA patients are at the receiving end of poor advice. Mmmm...

Does this reinforce the idea that, ultimately, Symptoms Rule in the management of PMR / appropriate steroid tapering regimens (as is often said here)? All responses welcomed..

It's Friday night so I'm just about to open the wine and turn-off my Mr Analytical head. ('Thank goodness', I hear some of you say!)

Have a good weekend all, keep smiling on the Journey even if a bit 'confused.com'.

MB

[El50 in reply to markbenjamin57]

Thank you Mark --Enjoy your wine.

[markbenjamin57 in reply to El50]

Thanks El50 (hic!) ;-).

I know that, although we want to trust GPs' / Specialists' advice, they aren't always right (unfortunately) and it seems that PMR / GCA and the effective management of it is still uncharted territory for some medical professionals.

All I can say is that there is a goldmine of trusted advice and experience here - this support has helped me immensely during my sometimes tortuous and confusing journey with this debilitating chronic illness (take a bow PMRpro, DorsetLady and HeronNS, to name a few).

And, we have some fun in between the tough / more serious stuff. In my books, that helps too

MB

[PMRpro Ambassador in reply to markbenjamin57]

Symptoms are always trumps. Always!

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

As herself says, symptoms are always the key, maybe confirmed by blood readings. But as we all know they're not very reliable - some patients never have raised markers, or they can be affected by so many other things.

I think early days, if you have raised markers at diagnosis it's wise to monitor them to ensure they are reducing, and therefore would indicate the Pred is working.

My ESR for example went from 68 at diagnosis down to 3 within 4 months of Pred, but for the resulting 4 years varied from high single figures to high teens- apart from a blip caused by stress, not GCA! Now, off Pred, but with arthritis they average 20.

[PMRpro Ambassador in reply to DorsetLady]

What I should have said was that if a CRP is raised without any symptoms the technique is "watchful waiting" - and check the CRP a week later. CRP will shoot up to silly levels with a chest infection. It may not be GCA.

[El50 in reply to DorsetLady]

Thank you Dorset Lady for your reply. I had been reducing already at 0.5mg a month from 9mg. - so his suggestion to increase the reduction came as a bit of a shock.From reading the mail on this site I thought that the reductions should be less percentage wise once you reach 10g .I think that I will try reducing 0.5mgs every 2 weeks,but if that doesn't work then I will try the dead slow method.

[PMRpro Ambassador]

I have had PMR for 13 years, have been on pred for 8 years. I am "still" on 7mg. My doctors are perfectly happy.

I think it is time for you to find a consultant who knows a bit more about PMR and how pred works in it! And with a bit more patience.

If you are on the correct dose of pred your inflammation markers SHOULD be low. If they were raised it would be a sign that either the dose were too low or you had some other reason for them to be elevated.

And this paper clinexprheumatol.org/articl...

Long-term follow-up of polymyalgia rheumatica patients

treated with methotrexate and steroids M.A. Cimmino, C, Salvarani et al

established that nearly one third of a group of patients with PMR required pred after 6 years and concluded it is NOT a benign short-lived disorder. It is said elsewhere that 50% of patients take between 4 and 6 years to get off pred.

As DL says, at this stage you will have to be wary about a speedy reduction - even 1mg per month may not be enough to allow your adrenal function to return without problems. If you had problems reducing anyway - now it is even more critical to be careful.

I would continue to use DSNS as fast as is comfortable. Theoretically you can still reduce at 1mg a month using it - if your body allows. And that is the crux of the matter.

Do you have a good and helpful GP? I would enlist their help. But the proof of the pudding is in the eating - perhaps you WILL be able to continue reducing steadily.

[El50 in reply to PMRpro]

Thank you PMR pro.

When I saw this consultant originally I had a very high ESR and CRP and was told that it was doubtful if I would come completely off steroids. So I was a bit surprised at the sudden speed of things.My GP is good, when I see him next perhaps it would be a good idea to discuss it with him -- BUT I think that I will follow the advice here and go slowly.

[PMRpro Ambassador in reply to El50]

He really does seem to have some strange preconceptions about PMR!!!!! A very high ESR and CRP are as much a reflection of how long you have been ill as the activity of the underlying disease - but it can fade quite quickly for some people. But predictions about how long you will need pred are impossible. My ESR and CRP have never been raised at all - but I've had PMR a very long time and it doesn't look like going any time soon!

[markbenjamin57 in reply to PMRpro]

Likewise, my CRP / ESR readings were never particularly high - even with a (later) diagnosis of PMR. My CRP was high-ish at the time - 56 if I remember correctly - but ESR was normal and the high CRP was attributed more to a bout of bacterial pneumonia than anything else.

I also remember my GP saying (and reading somewhere, possibly here) that ESR / CRP markers can contradict each other. With hindsight, his assessment was right.

[El50]

Thanks Mark. That could be right. My ESR was 103 -- my CRP - cant' remember the exact figure but over 300, so they seemed to tally but responded quite quickly to pred. When diagnosed I thought that I had only had it for about 3 weeks --just before a booked Paris holiday -- but it must have been some where in the background -- a pity that it did not stay there!!!

[markbenjamin57 in reply to El50]

Quite probably El50..

As I understand things: ESR markers can vary considerably according to an individual's natural bio-chemistry and health context. CRP readings seem to be more of a 'reactive' indicator of any recent significant influences / events for a patient under their consideration.

To be fair to GPs / specialists, I guess that they have to weigh-up the relevant blood stats markers in context and interpret / make a judgement on what's going on, and why.

[PMRpro Ambassador in reply to El50]

I imagine it is just as likely that a small proportion of people develop very high levels as that a small proportion don't show raised levels at all.

[El50 in reply to PMRpro]

I think that must be right.The only problem I had having high levels was that I had to have a body scan to exclude any cancer, a bit stressful waiting for it and then the result but thankfully it was clear.

[YamaHil]

Hi I was worried about reducing the dose but was pleasantly surprised to not have a relapse after coming off them. So maybe keep an open mind and see what happens? It could be better than you think.

[El50 in reply to YamaHil]

Thank you Yama Hil

[Charlie1boy]

You have had so many replies giving good advice which I can thoroughly endorse.

I am two and a half years into PMR, and am currently trying to get down to 4.5 from 5, and I'm not really sure if it is going to work!

A half mg makes a huge difference to me, and it took me over three months to get past the 7mg mark.

Seems to me you have done well, and even better to follow your instincts!

Good luck.

Paddy

[markbenjamin57 in reply to Charlie1boy]

I agree Paddy..

I'm on a similar trajectory you and have also been hovering between 7 and 6 mgpd for about 6 months - and now back to 7.5 to take the edge off the symptoms. Admittedly, this was after a few full-on weeks mentally and physically, and a reminder that Symptoms Rule and even the best of tapering plans bring no guarantees - as others say here.

[El50 in reply to Charlie1boy]

Thank you Paddy, we had PMR for nearly the same time.I agree about the half mg.it does make a difference.

[Amkoffee]

After five attempts at getting below 11 mg I realize that my body is just not willing to go below 11 mg. Which means I've got to now convince my doctor of that. I know she's not going to accept it. And I've only been diagnosed since September 2016. So I feel like I'm in kind of the same boat as you. You and I and our bodies are at the point where we should be. It's not a choice you and I can make or our rheumatologist, it's a choice our bodies have made. We should just stay where we are for a while until our bodies say it's time to reduce lower. And to reduce now only causes more problems.

[markbenjamin57]

Hi Amkoffee / all following this thread

That's a pity (your doctor..). It seems that GPs' / Rheumies' knowledge of, and sometimes dogmatic attitudes vary considerably. My excellent Rheumy (Dr. Samy Zakout / Bristol UK) was very good when I last showed him my detailed reduction 'plan' / progress chart - even though he had hoped I would be off the preds by the time I saw him (I guess for my sake as much as anything?).

He generously conceded that 'the patient ultimately knows best' in terms of managing PMR symptoms / the steroid tapering and didn't put me under pressure to reduce the preds any more quickly than I felt suitable. In other words, he trusted that I was / am in control of my steroid management process and confirmed this in a letter to my GP. Result!

The moral of the story / best strategy?

1. Don't feel intimidated / guilt-tripped by a GP or Rheumy who doesn't have empathy with the patient and / or doesn't know their stuff with PMR / GCA and the often complex and unpredictable process of steroid tapering.

2. If 'doing battle' with them, just make sure you are armed with reliable facts and data about PMR and 'Best Practice' steroid tapering regimens (e.g. DSNS) - of which this forum is a goldmine. Put your case gently but assertively, and be clear about what you want / need from them, and why. I'm sure that most sensible medics will respond positively, so long as they are gently guided by their patients - or give you a credible explanation as to why, if they can't.

I know this sounds a bit like the tail wagging the dog (!) - but as I've said here before, 'experts' (in nearly any context) can benefit greatly from the quality of information their patient / client gives them in order to make a sound judgement-call and support a request to vary the standard (often arbitrarily based) plan / solution.

That's enough of my ramblings for tonight, hope it helps.

Have a good and relaxing weekend all - and keep smiling

MB

[JanetRenee]

I had a similar experience some years ago, my GP referred me to a rheumatolagist, who sent me for blood tests, as a result he diagnosed me thus :- Sero negative rheumatoid arthritis, with a poly-myalgic onset. The arthritis has progressed slowly, but is now pretty bad.

[PMRpro Ambassador in reply to JanetRenee]

So how did he treat you?