Prophylactic Prednisone

[soreoldbiker]

I am wondering if any recovered PMR sufferers now use prednisone prophylactically (or even neurotically)? For example, is there anyone out there who continues to regularly take a very low dose (e.g., 1 mg), notwithstanding that they are completely symptom free. Or perhaps there are some folks who take a slightly larger dose after intense workouts or major stress situations.

If one assumes that one is never totally "cured", the idea would be avoid a build up in inflammation that might go into runaway or flare mode if not appropriately managed.

😊

[piglette]

I would imagine anyone who is able to get down to zero does. There will be some whose adrenal glands are never going to be able to stand on their own two feet and those will continue.

[SnazzyD]

It does occur to me sometimes that I may have large vessel inflammation cooking away asymptomatically and one day I might drop dead with an aneurysm going pop. I’m off Pred and have been since Aug 2020 and apparently in remission. The only times I have taken extra Pred is when I have had an adrenal crisis which has happened about 5 times since I was on 2mg, 3 of them on zero. I won’t be taking a prophylactic dose long term or with an acute event because I was sensitive to Pred and knew when I was on it, even 1mg and below for a year. It took a few months after stopping before I felt its effects go, so to me 1mg isn’t nothing and if I don’t have an obvious need, I will steer clear. I fought hard to get an independently working adrenal axis, so won’t be undoing that work by making it dependent on 1mg. At least that’s how I see it and I may be wrong for someone else.

There is no telling what dose will protect you from a relapse and what events in one’s life and internally will trigger one IF it happens. If you get a sudden and high level of inflammation I suspect 1mg will be a drop in the ocean. There may be a clinical need like PMR that seems to require a permanent presence of Pred and a couple of mg is shown to be effective and necessary.

Using it “neurotically” as you put it worries me as it can be a slippery slope. I guess it might be ok if a person is careful not to draw a line under each ‘special’ occasion that requires a top up in order to avoid quietly accumulating more Pred than is wise. Having seen people medicating in various ways to get them through an emergency, it can be easy to persuade oneself that this time really is necessary and somehow different thus needing a bit of help. One’s internal dialogue can end up seeing potential catastrophe in just having a down day or being tired. I think it also stops one trusting one’s body to do things on its own.

Another way to look at it is that life’s too short and so what, but then the only issue is finding a doctor to prescribe it to you.

[Avadip12 in reply to SnazzyD]

Yes I agree with all your thoughts on why someone might choose to continue to take pred when they are wondering that they way have finally conquered PMR . I was wondering how you knew you were having an adrenal crisis, as this thought has happened to we on more than 4 occasions , with all the symptoms , but was advised to remain on same dose until my synatchen test and morning cortisol results . Both of which were normal . I couldn’t believe it , as my symptoms of low adrenal were so strong. Both my CRP & ESR and all other bloods were also normal. So in the end , what was happening ? No one has any idea, and to be honest they are not really concerned as there is nothing for them to cure , other that my dreadful fatigue and bouts of feeling like total shut down. They just want my off of steroids . Thanks for listening

[SnazzyD in reply to Avadip12]

During my low adrenal function days I felt tired most of the time and anything extra like going to the shops would require a lie down. I also had to sleep in the afternoons and my mood was pretty low. I didn’t take Pred to make myself feel better for this otherwise the body may not get enough feedback to do it for itself. It was a rough number of months.

When I took Pred was when I felt at the point of collapse, sweaty, weak and with a deep feeling of foreboding like I was in deep trouble. I feel nauseated and diarrhoea starts or at the very least abdominal cramps. At first it starts off as if I’m low in blood sugar but food doesn’t help. The taking of a couple of mg Pred helps after an hour or two but then I have to lie down and do nothing for hours or a day.

[Avadip12 in reply to SnazzyD]

Dear snazzy , it was so interesting to read that in your low adrenal times , it feels like low blood sugar. That is exactly my experience. In fact I have spent the last few days in this situation and have taken to the sofa as I just can’t walk about . I feel weak and ill . I cut down by 0.5mg a week ago and now have to go through the process of trying to adjust to my lower dose. Just wondering , of course I don’t expect any body to have the answer. Thanks again for listening

[DorsetLady PMRGCAuk volunteer in reply to Avadip12]

This link gives more info on adrenals and what you are experiencing are typical signs of them struggling.

healthunlocked.com/pmrgcauk...

One way to help [a little] is to use a slow tapering plan that we always suggest on here - as you say you ‘cut down by 0.5mg a seek ago’ implies you don’t - so might be worth considering that- see here for a couple -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Avadip12 in reply to DorsetLady]

Thank you , I have screenshot the 7 wk taper and putting that into action . Many thanks

[PMRpro Ambassador in reply to Avadip12]

They can't see beyond lab numbers - and they don't show everything.

[PMRpro Ambassador]

If you are taking 1mg on a regular basis you can be symptom-free even though the underlying autoimmune cause of the PMR symptoms is still active at a low level - but without pred the inflammation will build up in a few months.

I know the Prof Dasgupta told us he sometimes keeps patients at 2-3mg as it reduces the incidence of relapses. I think that is unnecessary - you should aim for the lowest dose that keeps you well and spending a few months at each dose at those low levels may let you get to 0mg. Then if it does reappear after a few weeks/months you could decide to stick at 1mg. But like SnazzyD I think you have to try at least once to get off altogether.

[soreoldbiker]

Thanks all for your thoughtful comments. What prompted my inquiry was my recollection of several very stiff and sore periods in the months prior to the arrival of full blown PMR. I sometimes wonder if I could have headed things off earlier with a short course of low dose prednisone. I also think that I have had a stiffness/soreness issue/predisposition for many years. I have always been much stiffer than virtually all my friends, and used to regularly google looking for an explanation. Ignoring side effects, I now wonder if 1 or 2 mg of prednisone on a regular basis might have made life a little more comfortable over the last decade or so, and prevented the crisis that I eventually encountered.

I'm now at the 4 mg stage. If I ultimately make it to zero, I suspect that I will be a pretty cautious and nervous character whenever I experience any future stiffness or soreness.

[DorsetLady PMRGCAuk volunteer in reply to soreoldbiker]

I sometimes wonder if I could have headed things off earlier with a short course of low dose prednisone.

You might have, but if it was PMR although Pred may have helped for a while, it would have resurfaced… it is a self limiting disease, and seems it needs to run it’s course - whatever you do, or don’t do. So no point fretting about what might have been.

As for once you reach zero, you don’t need to be “cautious and nervous” if your PMR has gone into remission. You do need to be aware it COULD still be lurking ready to reignite, but also remember that lots of things cause random aches and pains, not least age. Just get on with life, and be aware but not paranoid.

[PMRpro Ambassador in reply to soreoldbiker]

No - it doesn't work like that. Pred CURES nothing - it combats the inflammation - and that relieves the symptoms. But it can only do that when the inflammation is actively being created. Your concept of a short course of pred would have been like cleaning the hob on Monday and then letting the milk boil over on Wednesday - you still have to clean the hob again and repeat every time the hob is used if you make a mess.

[Sharitone]

I have been told to aim for a maintenance dose of 3mg. However, if I can get lower, I shall do.

[enan-illuc]

I have GCA and PMR that is in remission and I take 2.0 mg of Prednisone daily. GCA does not go away, and at 76 years old I need all the help I can get. I have had two Rheumatologists tell me that it is not a problem with a very low dose long term. If I feel the need I will also take some extra Prednisone but this is not often. I hope this helps.

[DorsetLady PMRGCAuk volunteer in reply to enan-illuc]

. GCA does not go away,...

Mine went into remission in 2016 - and has never resurfaced...not taken any Pred since - apart from a very short course for something else.

[soreoldbiker in reply to DorsetLady]

Well it seems that the best course of action when/if remission occurs will be to use prednisone when pretty clearly necessary, but not otherwise. My rheumatologist refers to it as an anti-inflammatory atomic bomb. But as noted above, the side effects even at low doses are potentially really disruptive. The HPA Axis is obviously a core body system presumably best left to its own devices.