PMR

[elide]

Does taking a lower dose of prednisone and living with more pain extend the length of the illness?

[piglette]

From bitter experience I have found it a total waste of time living with the pain, as PMR just raises its ugly head and takes over so in the end you are forced to up the pred. PMR only goes into remission even when you have got to zero, it is always sitting there, hopefully never to wake up again.

[SnazzyD]

If you have pain, you have inflammation that is uncontrolled. This in turn can be causing damage internally to the arteries and possibly go on to GCA. It isn’t about toughing it out.

[GOOD_GRIEF]

Pred is not a cure for PMR. It's a treatment that reduces inflammation, and thereby, reduces pain. Some studies have indicated that higher levels of pred introduced soon after initial onset, followed by a slow reduction, may shorten the cycle of PMR, but the studies are by no means conclusive. Untreated and uncontrolled inflammation can lead to GCA and/or cardio-pulmonary complications.

That being said, useless suffering is useless. It won't shorten the course of the disease and it won't lead to a better outcome over the long haul.

Getting to the lowest dose that reduces inflammation levels and controls symptoms is the goal.

Rest, nutrition, proper supplements to manage side effects, gentle exercise that preserves range of motion, strength and stamina without stimulating further inflammation or causing injury, are each important factors in managing and recovering from this condition.

[PMRpro Ambassador]

Impossible to say - it will last as long as it wants since the pred only manages the symptoms, it does nothing to the actual underlying illness that causes the symptoms we call PMR. It reduces the risk of inflammation damaging blood vessels but nothing much besides.

What will almost certainly happen is that the left-over inflammation will build up over time, like a dripping tap will fill a bucket, and then overflow to leave you in the same state you were originally. When that happens it is often harder to get the symptoms under control again and you may need a higher dose of pred. And it is felt by experts that unmanaged PMR is more likely to progress to GCA - and then you will need a much higher dose of pred to reduce the risk of loss of vision.

Otherwise - the others have said most of it!

[SheffieldJane]

You have received the wise factual advice. I just want to add my empathy for how you feel. I think that we all want to throw the Prednisalone out of the window at some time or another, particularlywhen side effects strike like weight gain. It remains all we’ve got though, love it or loathe it. If particular side effects are a worry, people have found ways to combat them. Just share them on here.

[elide]

Thanks for all your comments. I should have mentioned that the reason for taking less prednisone is that I am on the verge on having diabetes when the prednisone is high. It, also, possibly makes me dizzy although I'm not sure that that is what caused the dizziness in the past. I have had PMR for about a year and a half. It wasn't diagnosed for the first three or four months. I started on 60 mg. than took 40 for a while and then have been reducing it. I now take three mg. I can function, though there is pain, nothing like what it was in the beginning when every movement was extremely painful.

[PMRpro Ambassador in reply to elide]

Have you been advised to cut your carb intake? When you are on pred the liver triggers random spikes of glucose into the blood - that together with the BS due to eating carbs takes you to the realm of steroid-induced diabetes. The more you cut the carbs - the better your Hba1c level will become.

60mg is a very high (unnecessarily high) dose for PMR - and probably contributed to your problem with BS levels. But I'm not sure you have understood what we are trying to say: your choice is enough pred to manage the symptoms properly or taking less and risking the inflammation building up again to the level it was originally. It won't shorten or lengthen the duration of the disease - and either you take enough to manage your symptoms or, to be honest, you might as well stop taking it altogether.

[Saww in reply to elide]

Doctor should manage your hyperglycemia

[elide]

I appreciate everyone's response but think I haven't been clear with my problem. Last year I was unable to move. Everything was in terrible pain and I spent a good part of the day in a reclining chair. I've been on very high doses of prednisone for a long time but a year and a half later I am taking 5 mg. There is pain and stiffness in my hips and shoulders, mostly in the morning. If I stretch, the pain and stiffness are totally something I can function with. I go to a Silver Sneakers class and walk. When I take the higher doses of prednisone I get dizzy, and higher diabetes numbers.. Given that I am functioning, and am able to ignore the pain and stiffness most of the time, is there any reason to take a higher dose of prednisone?

[PMRpro Ambassador in reply to elide]

Depends on how you look at it. If there is inflammation causing these symptoms then it is also doing damage to your body putting you at risk of peripheral and cardiovascular disease and even some cancers.

I did answer your question in my post above - if there is leftover inflammation it will eventually build up to the same as it was originally and you run the risk of having to go back to a higher dose or put up with how you were. Maybe slightly more pred just now would reduce the risk of that happening. PMR has a median duration of 5.9 years - you are way off that and you have the prospect or remaining in pain for some considerable time unless you are one of the lucky people for whom it burns out sooner. 4 to 5 years is fairly common. All the pred is doing is managing the symptoms - it has no effect on the actual underlying autoimmune disorder - so won't lengthen or shorten the duration of the illness. Either you take enough to give a good quality of life - or you have to ask if it is worth taking any as eventually, sooner or later, you may be in the same state again. It is your choice.

If "all" you have is PMR then you were started on a VERY high dose of pred. one that is usually reserved for GCA. That in itself put you at risk of the side effects of which you complain. A much more normal starting dose for PMR would be up to 25mg, 15mg is often where patients are started - and associated with far fewer side effects. Then they taper to find the "right" dose for them - often under 10mg from a fairly early stage. But as soon as they overshoot that dose the symptoms will creep back.

I think everyone HAS offered you the information you need to look at your situation and work out where you are. Are the symptoms increasing? If they are - you need slightly more pred or the dripping tap of inflammation will fill up the bucket. If they are stable then you are probably OK. But none of us can answer your question beyond that. Maybe just 1mg more per day would leave you with a better QOL. But only you can know that by trying.

[Saww]

No, getting off prednisone is hard. Your body has same polymylagia feel. Get thru it with marijuana. Or stay on prednisone