Posted , 9 users are following.
I've had PMR for about 5 years now. I've tried several times over those years to decrease my use of prednisone, but can't seem to get below 2-1/2mg. I took myself off prednisone for a couple of weeks and had to start back two days ago; however I don't think 2-1/2 is enough of a dosage. I am going to see my PCP in the next few days to get his opinion.
0 likes, 14 replies
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Silver49 charles2523
Posted
There will be others more knowledgeable than I who will give good information. I know someone who was 15 years on Pred and finally came off it last year. They got down so far and then had to increase. I have been on it for over 3 years, reached 1.5 and had to go back up to 3.5. I recently reached 2 and after 2 weeks there were signs that it wasn't covering and I am now on 3 which is certainly working. I think it is not a good idea to come off if you haven't reached .5 as the adrenal glands and body per se have not had time to adjust. The problem is the body then needs more to recover and it becomes a viscous circle. At 2.5 it is a very low dose and your body must be needing this amount. You may need to increase to 5 or more but you should be able to drop quickly back to 2.5. I would remain there for a little while to stabilise. Others will be along soon with information.
Silver49 charles2523
Posted
Try to think of the Pred as a life assistant rather than a sentence. The pain and lack of movement I would consider a life sentence not the Pred which allows us to have a fairly normal life. It's a question of changing our mindset and I would not like to go back to the symptoms I had before Pred. This is from someone who was not keen on having steroids and who wants to get off them ASAP but not at the risk of being unable to do most normal tasks or worse being housebound.
BettyE charles2523
Posted
Your body might be protesting at being deprived of Pred. for two weeks and might be asking for a little more to get comfortable.. ....5, maybe? If that works stay there for a couple of weeks and then try to resume your reduction and go very slowly, not letting the inflammation get a hold by trying to stay on too low a dose. 2.5 is very low and I think we have been told that the body needs around 7 to function so that once the dose gets below that there should not be too many worries about long term effects. If you've had PMR for five years then your adrenals will have gone to sleep long ago so there won't be surplus cortisol swilling around causing trouble and if you're in pain then that shows you need a boost I believe. ( no medical qualifications, just eight years of PMR and what I've learned from this forum. ) Happy to be corrected if I'm in error.
PS my eight years were two episodes of 3 and 5 with five years clear in between and I've been ok now on zero pred. for five years.
EileenH charles2523
Posted
The median duration of PMR is 5.9 years - there is still time! And 2.5mg is a very low dose and won't do you any harm.
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
The reason 2.5mg isn't enough now is because you stopped so suddenly (a risky thing to do with pred at any dose after 5 years) and allowed a flare to get hold. You probably need a week or so of more like 5mg (at the very least) to clear out the accumulated inflammation to get your baseline back down.
I've had PMR for 14 years, been on pred for 9 of them. I have been as low as 5mg but at present I cannot get under 8mg - for other reasons as well as PMR. There are people who have been on pred for more than 10 years and still managed to get off so 5 years is early days relatively speaking.
As Silver says - make friends with pred and try not to see it as a punishment. It is what gave you your life back. It isn't all bad. I can't add much to what Silver and Betty have said already.
charles2523
Posted
Thanks my friends. I feel a little more comfortable with the whole steroids thing. I have an appointment with my PCP tomorrow and will suggest upping prednisone to 5mg.
I'll let you all know.
Thanks again.
charles2523
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EileenH charles2523
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charles2523 EileenH
Posted
EileenH charles2523
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That's OK - just wondered.
dan38655 charles2523
Posted
I would be quite interested to know if this treatment for diverticulitis has any effect on your pmr symptoms.
I'm hoping for the best. Please keep us informed!
charles2523 dan38655
Posted
I think that is going to be difficult to answer. After starting my 15mg of prednisone, my PMR Symptoms are virtually gone. So its going to be difficult to know if the Metronidazole 500mg or the Ciprofloxacin 500mg will have any impact.
Today feeling good 😀
EileenH charles2523
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Michdonn charles2523
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dan38655 charles2523
Posted
Charles, your progress is unfortunately very typical for this condition.
I was an athletic 53-yr-old when pmr struck over five years ago, and I am still needing between 2 and 4mg per day, which fluctuates with the seasons. I make a judgement each morning as to whether my dosage is enough, and have learned the hard way not to hold off on any needed boost to my dosage!
I consistently get my dosage down to 2mg each winter, but pain in my knuckles, thumb and shoulder, as well as fatigue, tell me it's time to increase my dosage at around May of each year.
I'm doing pretty well these days so will just continue to be my own judge of my required dosage.
I am a very lean 144lbs these days, so my specific dosage should best be considered in that light.