I recently posted my technique for reducing prednisone under 8 mg of continual dose. My rheumatologist explained to me that under 8 mg of prednisone our own adrenal gland begins to take over and work. He told me that I could continue a maintenance dose of 5 mg or under continuously if I felt good on it. That the maintenance dose would not damage my adrenal gland. He also told me that the pain I have when reducing my prednisone dose under the 8 mg is caused by the drug prednisone. It’s the prednisone not the PMR that’s causing the pain when we try to reduce it.
I personally do not want to do a maintenance dose and I have been trying to reduce my prednisone to zero.
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MarkyMark60
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I see this is a continuation of previous post....and I still don’t understand where your Rheumy is coming from regarding Pred causing the pain.
How does he know that’s what is causing the pain, and not the PMR....or is he one who believes that PMR only lasts 2 years?
Yes we know that Pred can cause muscle pain, but so does PMR...and the fact that your inflammation markers aren’t rising is not 100% proof it’s not PMR. Up to 20% of patients don’t have raised markers, and those that do find the markers very often lag behind symptoms.
In my case I can quite confidently say your rheumatologist is WRONG. I have unfortunately had pain at various doses at all levels down to 2.5mg and some may be caused by the pred, but some definitely were not.
Oh MarkyMark60. This advice about Pred causing the pain is contrary to everything I have heard and experienced for 5 years. Why would he advise a 5 mgs maintenance dose if he believes it will cause you pain? The pain comes from the inflammation that Pred keeps under control, if you taper too fast or simply under dose yourself. A slow and careful taper is your best bet now, to give your Adrenals a chance to kick in and function.
Suppose it is a higher version of Dasgupta's 2-3mg dose? I don;t see what is wrong with using one of the slowed tapers to get as low as possible while being sensible about where we feel best. Plenty of people get lower than 5mg - by anyone's standards it is pretty high. 1mg is infinitely preferable isn't it?
Agree ...but what I was querying what Rheumy said - on one hand that Pred causes pain, but on the other suggesting staying at 5mg I definitely...doesn’t correlate- or am I being particularly dense. Perhaps don’t answer that!
And THAT is why we bang on about tapering in small steps and, if necessary, using slowed tapers. The primary reason is to be able to make it more likely that any return of pain is due to PMR rather than steroid withdrawal rheumatism. Had you looked around the forum a bit you would have seen we do talk about that differentiation a LOT. I think it is probably something that doctors misunderstand - it is perfectly possible to reduce the chances of reduction problems and also to differentiate between types of pain. And it helps greatly to not go about tapering like a bull in a chinashop. Small and slow is beautiful - plenty of people here who will tell you their experiences.
Nothing in this life is ever black-and-white. If you reduce the prednisone and you still need it for the PMR then you need the prednisone. If you reduce the prednisone and you don’t need it and still get pain that’s from the prednisone withdrawal. If you don’t believe that prednisone can cause withdrawal symptoms and you always contribute the pain of reduction to your PMR and never get off of prednisone
Pain from PMR and feeling unwell from steroid withdrawal is not the same.
Steroid withdrawal can sometimes be similar to pre diagnosis although usually not as severe, but is more likely to be a general malaise of not feeling 100% whilst you body adjusts to lower dose. and can be helped by paracetamol or similar.....which is why the slow tapering plans we talk about were designed.
As PMRpro rightly says, not all doctors understand that, and maybe because patients don’t differentiate between real pain and feeling slightly off colour.
Prednisolone or prednisone does not cause withdrawal symptoms characterised by pain. Medically speaking "withdrawal" is not the correct term to use in the situation you refer to.. Any aches, pains or soreness felt as the dose of Corticosteroid (Pred or its sister drugs) reduces to below 7 or 8mg is the result of Acquired Adrenal Insufficiency and the body crying out for cortisol OR the PMR is still active and the dose is insufficient to deal with the amount of inflammation being produced.The problem we have as patients is the pains are very difficult to distinguish from eachother. The only method I have found is the use of Paracetamol or Ibuprofen. If the pains go it's not PMR causing the problem.
If only doctors would take the time to learn more about PMR and Corticosteroids and Acquired Adrenal Insufficiency. My consultant does not even believe AAI exists. He thinks the adrenals will just spring into life with no problems. Unbelievable.
I've found hat withdrawal pain comes on soon after a reduction, and diminishes over a week to 10 days. "Flair" pain comes on later, for me usually after 2 weeks on new dose, and increases over time.
You can't 'get off ' Pred until the inflammation in the body is cleared. If you come off Pred before that happens you will have pain/withdrawal symptoms and might risk damage to muscles and cells. Even small changes in doses can cause a return of symptoms which is why tapering must be carefully managed to avoid a possible risk of long-term damage. It is incorrect management of the disease that will cause harm, not the medication.
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