Advice regarding recent flare up please.

[Legsandmore]

Hi, l have been tapering down my Pred and had reached 7mg. I can’t say l was pain free, but it wasn’t too bad.

I have been under a lot of pressure from my Rheumatologist to taper off as quickly as possible.

I had been dropping 1mg per month.

In the last week my symptoms have worsened and l am in no doubt that the PMR is coming back.

My question is, do l up the Prednisolone to combat the pain and stiffness (which is now enough to impact my daily routine and sleep) do l stick with it a bit longer and see what happens ?

To be honest, l guess l know what will happen, the PMR Symptoms will continue to worsen and kind of over take the Prednisolone.

If l do up the dose, by how much? I know l ought to ask my Rheumatologist, but he is so stubborn about reducing and to be honest, if l E-Mail him or use MyChart, it takes him weeks to reply and most times he doesn’t actually answer my question.

I understand he wants me off the steroids as soon as possible and why, but he doesn’t seem to understand that l want some quality of life too.

Thoughts?

[PMRpro Ambassador]

The PMR hasn't come back - it was always there in the background but you were taking enough pred to mop up the puddle of inflammation and so you had no symptoms. Though it does sound as if you had some niggles? Be honest.

You start with a dose that should be too much and clear out accumulated inflammation and then you taper that dose slowly to identify "your" dose, the lowest effective dose, the lowest dose that works as well as the starting dose. It is a process also known as titration and used with other drugs but usually starting low and going up until the desired effect is achieved. That doesn't work so well with PMR - you are always playing catchup.

Pred has cured nothing, it is a management strategy that mops up the inflammation and as a result relieves the symptoms. You need to go back to the last dose that worked well and stick there for a while. If just doing that doesn't appear to work, add 5mg to the dose you flared for up to a week and then drop back to that last good dose.

[DorsetLady PMRGCAuk volunteer]

Hi

This link contains advice on dealing with a flare -

healthunlocked.com/pmrgcauk...

.. and your rheumy may want you off the pred asap, but honesty it's the PMR that decides how quickly you can do that not him... and that's what some don't like. But the fact he doesnt reply in a timely manner is bad manners or organisation - or both!

Would also suggest that from now on you try and reduce by only 0.5mg per month -

Guidelines do state below 10mg - taper 1mg every 4 to 8 weeks - if he queries it!

[Markandevie]

Hi. I could have written this myself as exactly my predicament. I believe we know our bodies better than anyone and I too have taken to reduce my steroids by a tiny amount say 1mg a month that seems to work. You are right when you say that stiffness and pain are nor eradicated but at least manageable after a few hours.

[SnazzyD]

Sorry, what is his reason for coming off the Pred quickly?

They need to accept that if they are unreachable, for whatever reason, patients have to take things into their own hands. I said this once when I was feeling brave (pumped up on Pred?) after being left for 6 months on high dose steroids and I did my own plan that he didn’t like.

[Legsandmore in reply to SnazzyD]

My rheumatologist wants me off quickly due to my DexaScan results being poor and showing me in the Osteoporosis range. My bone density was already compromised due to previous cancer treatment, so the Pred doesn’t help. I can tolerate the calcium supplements he wants me to take, as they give me terrible gastric issues.

My maintenance dose seems to be 12mg, so going down to 7mg has been tough.

It’s a catch 22 as now l really feel like l need to up the dose to stop the pain, back to nearer 12mg

I saw my Rheumatologist fir the first time in 18 months a few weeks ago, he was of the opinion that 7mg was too high! I told him my symptoms were returning but he seems obsessed with tapering off.

When l asked if there was anything else l could take in combination with the Pred to help cope with a continued taper, he said No.

Is it any wonder that we end up self medicating? I asked him about my quality of life now, not in 15 or 20 years time, but again he isn’t interested.

From what others on the forum have said, it sounds like l need to up the Pred by approx 5mg, funnily enough it would take me back to 12mg which l think is my go to dose.

I know l ought to ask him first, but l don’t have much faith in him anymore. At the end of the day he doesn’t live with this, but l do. If he walked a week in my shoes, l suspect that he would be singing a different tune

Thanks for the advice everyone x

[SnazzyD in reply to Legsandmore]

Why aren’t they offering bone meds?

[Legsandmore in reply to SnazzyD]

They are but l can’t tolerate the calcium supplements they want me to take. They really upset my stomach. I have tried different ones, but they have the same effect. So l try to compensate with diet.

[SnazzyD in reply to Legsandmore]

Sorry, I meant bone hardening drugs such as Alendronic Acid tablets, Prolia injections and others. Not supplements but they act directly on the bone. Usually the first whiff of osteoporosis with Pred and they are offered and often before they are needed in many cases.

If your DEXA results are truly worrying, which remains to be seen, I don’t know why they are not offering them instead of withdrawing the Pred you need to function.

[Legsandmore in reply to SnazzyD]

I take the Alendronic acid once a week and l am okay with that it’s the calcichew etc l can’t tolerate. I haven’t been offered anything else

[PMRpro Ambassador in reply to Legsandmore]

Then ensure you have decent dietary intake - you do need calcium when on a bisphosphonate or at least regular blood tests for calcium levels or your blood calcium level can fall to something a bit risky. And vit D is just as important. I have always bought my own rather than use the prescribed rubbish.

[Louisa1840 in reply to Legsandmore]

Personally I wouldn't bother with this rheumy anymore, he sounds a dead loss! I manage with my lovely GP and this brilliant forum. I started Prolia injections (one every 6 months) a few weeks ago with minimal side effects. All the very best.......

[piglette]

Whatever you do, DON’T try and tough it out, the PMR will win! Try increasing by 5mg for a few days, if that works OK, just drop back to the last dose where you felt comfortable. I don’t understand some of these doctors, do they think that we enjoy taking steroids and don’t want to reduce?

[Bcol]

Totally agree with all the other comments and your Rheumy needs a few lesson on the facts of life and dealing with this disease on a day to day basis. Hope all goes well and going up to 12mg puts you back on track. 0.5mg every five weeks or so has worked well for me.