I have a question about the PMR desease as it relates to prednisone. I’ve always understand that prednisone is not a cure for PMR, but only masks the symptoms. And also that PMR will eventually go away. But it seems that for it to go away, one has to taper prednisone down to zero. Is that correct? Could the PRM disappear while still taking prednisone? If not, then prednisone (or tapering it) does, in fact, seem to cure PMR in some way. This would indicate that Prednisone doesn’t just mask the PMR symptoms.
What am I missing?
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golferman
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The idea is that you are trying to find your lowest effective dose of Pred that adequately covers the inflammation from your particular level of autoimmune activity. We don’t do it fast because we don’t want to overshoot that level too much and to avoid withdrawal symptoms. Ideally you don’t get any symptoms.
Withdrawal symptoms is when your body is upset by the sudden reduction of Pred as it affects every bit if your body. This is also why we reduce not too fast.
The other idea is that as your autoimmune activity reduces you manage to match that with your Pred level. Ideally as you get to zero your PMR just so happens to have got to zero too in the ideal world. It’s not the getting to zero that makes you better, that’s a coincidence. As you’ve probably gathered that can be a bit hit and miss if the Pred level dips too low and also PMR activity can go up and down. So it could appear that the Pred cured it.
Thanks for your comment. So does PMR activity go down because one is taking prednisone? If one never took prednisone, would the PMR eventually go away?
As it’s normally self limiting - it most likely would, and in the past probably has. But the danger is the uncontrolled inflammation could do a lot of damage to the body, including developing into GCA/LVV etc with all the issues they bring to the table.
No, the disease activity is not affected by the pred, it just runs out of steam eventually. It MIGHT go away without pred, it probably would in fact. But I'd had it 5 years before I was offered pred and it hadn't gone away at all in that time. And 18 years on - I still have it. There is no way you can forecast if you will be a 2 year type or one of the small number of longtermers - That 5 years was bad enough, pred gave me my life back and freed me from most of the pain.
Pred doesn't cure PMR, no, but neither does it "mask" symptoms, I hate that term. It very effectively combats the inflammation - just like Advil stops you feeling a headache or the pain of an injury while the injury heals. It doesn't have any effect on the actual disease process, nothing does. It is just the mop that clears up the puddle the dripping tap creates.
You start with what is too much pred to combat the inflammation and to get rid of the pain fairly quickly and then you taper the dose to find the lowest effective dose. Over time the activity of the underlying autoimmune condition that causes the pain dies down and eventually usually burns out. Once that happens you will be able to taper the pred to zero without the symptoms returning. In the meantime, you are almost always able to steadily use less and less pred to keep the symptoms at bay.
1. I’ve always understand that prednisone is not a cure for PMR, but only masks the symptoms.
Correct it’s is not a cure, but it controls the inflammation caused by the illness - but not the illness itself
2. And also that PMR will eventually go away.
Correct- it is a self-limiting disease
3. But it seems that for it to go away, one has to taper prednisone down to zero. Is that correct?
No, it is not correct. The initial [high] dose is prescribed to get built up inflammation under control, and after that ‘as stated] you are trying to find the lowest dose that gives the same relief…. With luck by the time you reach zero your PMR will be in remission - but that’s not always true.
4. Could the PRM disappear while still taking prednisone?
Yes it could, and does…
5. If not, then prednisone (or tapering it) does, in fact, seem to cure PMR in some way. This would indicate that Prednisone doesn’t just mask the PMR symptoms.
I’ve always understand that prednisone is not a cure for PMR, but only masks the symptoms.
I think you are right that prednisone is not a cure for PMR, but in the case of inflammation, prednisone manages it, it doesn’t mask it.
And also that PMR will eventually go away. But it seems that for it to go away, one has to taper prednisone down to zero. Is that correct?
Regardless of whether you take prednisone or not, PMR does go remission for the majority of people (when this happens is another discussion). However, the build-up of inflammation can be very damaging, which is why prednisone is prescribed. So I don’t think the tapering of prednisone has much to do with PMR going into remission.
Could the PRM disappear while still taking prednisone?
I think this is definitely possible. The other issue we need to deal with as we get below 10 mg is adrenal function - getting the adrenal glands to start producing cortisol once again. So even if the PMR has gone into remission while still on prednisone, slow tapering still has to be continued so not to go into adrenal failure.
All of what I’ve written is what I’ve learned from this website! Many thanks to everyone, but especially PMRpro and DL!
Many thanks to all who have patently explained it all. PMR is definitely a complex disease. I'm into my 5th year and go down to 4mg before it flared up in a severe way. I'm backup to 9mg and tapering down very very slowly. Hopefully that will work.
However slowly you taper, you will never get lower than the dose you are looking for: the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did. SLow tapering means you get to a dose where the symptoms start to reappear - you don't "tough it out" as some doctors would have it, you immediately go back to the last dose that was good, leave it for a month or two and then try 1/2mg again, If that works, you can try another 1/2mg and so on.
Joined this lovely group today and, having read several posts, now realise that I have been foolishly 'toughing it out' when tapering down to 5mg (from orig dose of 15mg). Am having daily stiffness and pain.
I had gone back to 6mg, but this did not help.
I'll try 7mg tomorrow and hope it leaves me pain free.
maybe have a look at this re dealing with a flare - you may not need to increase by suggested 5mg - some don't, but don't let it get out of hand - otherwise you'll end up creeping up - and to be honest that's not the best way -
Thank you very much. I have read the very useful info you have linked.I will ask the gp for some 0.5s to add to the 5s when I go back to tapering. In the meantime, I'll go back to a higher dose.
Hi golferman. Just to add my two pennyworth to the responses so far - PMR affects us all differently but there are similarities in the muscles affected. The stressors that perpetuate the underlying condition, that cause us to take alternatives to cortisol (prednisolone) to lessen or remove the pain, also vary from individual to individual.Reducing the dose of prednisolone (tapering) necessary to mop up the agents of inflammation so that any pain is 'acceptable' (the 'lowest effective dose') is a goal simply because both patient and doctor see life without steroids better, for a number of reasons. If you continue your life assuming that prednisolone is curing you, but not changing your lifestyle to reduce your stressors, you are likely to prolong your date with PMR pain, in my opinion. That is, to some extent, you need to bear responsibility for your symptoms while tapering, otherwise the pain will recur - a 'flare'.
This site is so valuable because it explores the multifactorial nature of a nebulous condition from the perspective of many. How you deal with your personal ailments is down to you and your medical advisors.
My personal goal is to get my adrenal glands back in shape, produce the cortisol I need, and reduce my reliance on drugs and supplements. It goes without saying that thereafter trying to live a stress-free life 🙏, eat healthily (more plants!) and exercise regularly is the plan for the remainder of my retirement.......
Sermon over.
Best of luck with your PMR journey. May your flares be few and your pitching perfect 😉
In the context of PMR or GCA, pred isn't an alternative to cortisol - cortisol has little to do with the development of PMR and the pred is being used as a highly effective antiinflammatory. It only becomes an alternative to cortisol if the adrenal glands refuse to return from an enforced gardening leave but decide to retire instead. Then you can use hydrocortisone which is the same sort of structure as cortisol or pred is an alternative there,
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