I realize that tapering down to the lowest dose of prednisone and still control PMR pain is the major goal in treatment of this disease. There still questions I have about what constitutes a Low Dose. Some articles state 7.5 mg and some say 5 mg. The questions I have is, are the difference between 7.5 and 5 mg negligible as far as side effects ? Is there a safe dose to taper to with minimal effects on the body and still able to control pain? Is there always risks with any dosage until remission is achieved? Obviously 10mg is more detrimental to the other body functions than 4mg . Has anyone ever found a percentage attached to a prednisone dose that is more likely to cause cardio vascular damage then a lower dose? It seems the medical community is obsessed with percentages and ratios when it come to most major diseases, but I find very little PMR drug dose levels and side effects percentages with long term use.
low Dose Prednisone : I realize that tapering down... - PMRGCAuk
low Dose Prednisone
In this context it is the lowest dose that gives the same result as the starting dose - there is no "it must be less than ...", you need what you need at any given point. It is likely to get less over time but it may rise again if you develop a flare, usually due to trying to get to too low a dose of pred in the mistaken belief lower is better. When you do that you often end up taking more pred than if you had listened to your body telling you how much pred you need.
In terms of cardiovascular damage - pred is the least of your worries, this is a vasculitis, inflamed blood vessels, the pred is protecting the cardiovascular system.
I have been on well over 10mg for much of the last 15 or 16 years since I started pred - there are no identifiable CV problems due to pred. I had atrial fibrillation - due to the underlying autoimmune part of the PMR which damaged the electrical system in the heart. I had it long before I went onto pred. For a long time, if I flared, the a/f was worse, the pred dose was helping manage the a/f.
I had 3 rounds of a-fib after open heart surgery. I was able to get back to normal rhythm with cardio version . It was very uncomfortable for me and so glad it hasn’t come back. The only real noticeable side effects I’ve had so far is nausea, fatigue, and some reflux. I’m hoping that will be the worst for this first month.
In your case, I think it is the disturbance of the heart during surgery. Mine is paroxysmal and comes and goes, It might be half an hour every few weeks, it might be 12 hour episodes almost every day. But they haven't tried cardioversion yet - it could be back the next day! I find the fatigue worst usually but when it was really bad 2 years ago I struggled to do anything because it caused low BP and dizziness if I wanted to stand for more than a few minutes. Pain in the anatomy!!!!
That’s what my cardiologist said when he first shocked me back into rhythm when I was in ICU. “Your heart is pretty angry right now!” It didn’t get back to and stay in normal until the 4th week of rehab. They mentioned radio ablation should medication and cardioversion not be effective. Hoping yours stays infrequent and mild.
I've had an ablation - cryo, not radio. Sorted the a/f we think but a bisphosphonate infusion a few weeks later triggered atrial tachycardia ...
Sorry to hear that. Do you attribute the calcium problem with the PMR?
Calcium problem? Sorry, not sure what you mean.
Sorry, my wife was on bisphosphonates for osteoporosis shortly before she passed.
I'm afraid you just take whatever you need to control the pred. Some us get side effects, others don't. Some of the side effects can be minimised (low carb diet to prevent diabetes, weight gain), cream on thin papery skin. Others can't. It can be a very debilitating ride for some of us...let's hope you have a smooth one.
Thank you. Your real life experience with this disease is as valuable as any medical articles and Dr opinions.
Perhaps because drugs are my speciality subject (Pharmacist) I would say a low dose of Prednisolone is one that is below the physiological equivalent of our average adrenal cortisol output. I have just checked a couple of reputable sources and the values vary slightly.
NICE 28.8.2024 Say 3-5mg Prednisolone or Prednisone is equivalent the average adrenal output but the value depends on body weight, stressors and illnesses. The Endocrine Society gives the value as 4-6mg. Both values are for adults over 16years old.
What this means is that once we are able to take less than 3 or 4mg of Pred we should no longer be suppressing our own cortisol output. IN THEORY. You have to remember though that because starting doses of Pred to treat PMR are high enough to cause HPA axis suppression within a few weeks, and treatment lasts years, even once we get down to the 5-6mg range our adrenal cortex may not be capable of picking up the slack and it can take a very long time for our own cortisol output to become normalised. Even when more activity does occur it can be variable and incapable of producing more cortisol in an emergency or during an illness. You asked "Is there a safe dose to taper to?" The absolute answer has to be zero. All drugs have side effects but once the dose of Pred is very low (3,4,5mg) side effects become minimal. In medicine it is always a balance between benefits of treatment , side effects and the risks of not treating.
Again this is extremely helpful in understanding this treatment. I’m hoping to achieve those levels as soon as it’s safe to. I’ve already had one experience about how sensitive my pain is to the amount of prednisone I’m taking by missing the 5 mg dose that I’m splitting up during the day. Two hours before the 10mg dose was due the pain in my hand was starting to come back. Thank you!
Thank you for this!
Every patient is different. All that can be said is that the risk of side effects from corticosteroid use increases with the level of dose and the duration of treatment. Whether the risk is worth taking depends on how much quality of life (QoL) the individual patient recovers at the minimum bearable dose.
I know several people with life-long autoimmune conditions that require immunosuppression. They take non-steroidal drugs because the risks are lower. Those with transplanted organs are in a similar situation.
It is a moot point whether NSAIDs have lower risks. There is a lot of current research suggesting they are not as safe as we have been told in the past.
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