Yes we all want to come off them and yes Rhumi's are totally focused on getting us off them.
However, it is my understanding that people who've had an organ transplant will be on Pred for life.
Sooo, if you have a kernackered auto immune system, maybe you'll be on Preds for life.
If Rhumi could come up with an alternative to Pred I would be over the moon.
I'm an old fart now and as such my theory is 10 years more pain free rather than 20 years more suffering. Gotta be quality over quantity 
Agree with your last sentence!
Not for life necessarily- but there are a lot worse drugs to be on than Pred.
As for a direct replacement- highly unlikely, no big pharmaceutical company is going to spend millions on research when we have a drug that does what it says on the tin, and is cheap as chips!
And most GCA (never mind PMR) patients (under NHS anyway) aren’t going to get Actemra (tocilizumab) or variant until the price of those reduces significantly.
I think that sometimes they are so worried about gold standards and accountability that they can’t accommodate some old fart philosophy.
When old farts very often know better!
Well that’s my excuse- and I’m sticking to it!
It isn't only pred - it is a cocktail although pred used to be used a lot. Now it is often pred at a physiological dose (8mg-ish) or fixed at 5mg - and any rheumy who gets antsy about us being on 5mg in PMR or GCA and wants to add in a "steroid sparer" is being a bit silly I think. You are right - there are several disorders where patients are on 5-10mg for life and their doctors just manage it. So I really don't understand why they get so upset in PMR.
I’m beginning to wonder if there has been some sort of national directive to “get them all off Pred”. I saw a new Rheumy in January after my old one retired. The new Rheumy said I had become steroid dependent ( after 5 years with PMR) and I needed to get off them by the end of the year.
Is there some concern that we are more vulnerable to Covid 19 due to our Pred use?
So how do they define steroid dependent? Is it that you need steroids to keep your pain and stiffness and other symptoms under control? So does that make RA patients dependent on methotrexate, or Naproxen, or whatever?
New Rheumy doesn’t think I have PMR as he says it doesn’t affect hands and feet and I keep getting painful feet or swollen hands and fingers. I did reduce Between Feb and May this year from 12-5 to 10 in 2 steps using DSNS. At every day 10, symptoms returned and I went back up to 11. Rheumy says that wasn't a flare………
I’ve just started a DSNS reduction from 11to 10 despite having swollen right hand and fingers. I’d prefer to stay at 11 but feel under pressure to reduce.
My view is that Pred is a huge defence against the terrifying inflammation that is part of many (or maybe all) hospitalized Covid cases.
'steroid dependant' - That's a phrase my GP has used, to which I replied that I wasn't it's just I have a disease that needs steroids. But thinking about it, I should have just said so? what's the alternative? Have you got a Plan B for me then? We are where we are
I agree with your comments tangocharlie. I’m just frustrated that I didn’t question his logic when it’s the only Effective treatment. Hey ho.
I think my GP wondered if I had reactive arthritis last year when I had the acute episode which confined me to upstairs in our house as I couldn’t manage the stairs at all. It did resolve after 5 weeks.
I think you responded at the time with details of your own experience and some good suggestions. Thank you.
You don't get the point I was making: in RA if you stop those medications the symptoms will return. So are those patients dependent on them?
Usually when they refer to us as steroid dependent, it is that we have been on them long enough that our adrenal glands are unlikely to ‘wake up’ and produce our own cortisol to take over. Everyone requires cortisol to live. If you are trying to wean completely off of Prednisone, be sure you have read over the symptoms of too little cortisone so you do not crash.
I have been on at least 5-10 mg Prednisone for about 7 years, currently on 20 mg for GCA/PMR and my endocrinologist says it is unlikely that my body will again be able to take over cortisone production if I try to completely wean off of Prednisone. So this is typically what doctors label as steroid dependent.
I'm well aware of the problems of returning adrenal function after long term use of steroids. However - some doctors use the term in a different context. And I was musing on why being unable to lower the dose of pred due to returning symptoms at above the physiological dose is any different from an RA patient being unable to reduce their dose of methotrexate because of returning symptoms.
Great replies.
We all know about pain, we desperately want a cure but until then we are all going to be dependent on some medication for the pain, there is NO choice involved.
PMRPro is right, there are thousands who can only live on a cocktail of serious meds and Doctors just accept that, why not us ?
I sometimes wonder if they think it's physiological stress.
I think that because some doctors consider PMR a “self limiting” disease, we should all just grin and bare the pain and stiffness, even when we are not yet in remission.
Not just some doctors, most doctors do, because that's what it says in their textbooks and even the official guidelines, 'it'll all be over in 2 years'. Even if it was, why do they want to us to taper off steroids in a year if we're going to have the disease for even 2 years?
It can be helpful to look back on our “journey” and see just how far we have travelled. You’ve certainly come a distance. Well done!
No, the episode last year never got a name. It was just described as an acute episode. I don’t think it was a flare in PMR as the increase in Pred from 7.5 to 12.5 made no difference to my symptoms.
Love it...am going to rethink my constant questioning myself and Rhm. to get off this
med. Love the quality verses quantity.... I do need to do more research on the Actemera.
My Insurance will pay or I will if it is a better alternative and less fuss about side effects. GeorgeDog
Pred and Avascular Necrosis...
1mg Pred
