Low Pred. or No Pred. ??
Posted , 13 users are following.
Hi, It is now over two and a half years since my PMR diagnosis and starting the usual Pred. regime. I am now quite well on 3.0mg. and wondering as follows:
Is there any evidence that staying on a very dose (eg. 2.5mg.), as opposed to reducing slowly (if possible) to zero, would actually be better? In other words, could a very low " maintenance" dose stave off a recurrence? Maybe this is a daft question, sorry if it is. Just thinking . . . . J
0 likes, 17 replies
faye______00403 Juno-Irl-Dub
Posted
no where near being off pred. I asked my doctor once if he had any
other patients and he doesnt right now but had one that insisted that
he would take lmg of pred for the rest of his life....not willing to risk
a relapse. I have a high school friend that has been off pred twice
but had to go back on. I think I would try the lmg to maybe keep
relapse from happening.
Juno-Irl-Dub faye______00403
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pam7653 Juno-Irl-Dub
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Juno-Irl-Dub pam7653
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EileenH Juno-Irl-Dub
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I know there are rheumatologists who feel that remaining at a very low dose and not rocking the boat is better than repeatedly attemtping to get lower. I suppose it is different if you elect to use the "Dead slow..." approach and really do listen to your body and as soon as it is obvious this isn't going to work you say, no, not yet. But it does amount to the same thing - can I get lower? No, apparently not - so that's fine where I am.
I'm not the only one who has reservations about the "Zero pred Club" that is quite a popular concept. In a desperation to be a member, some lose sight of the aim: to have the best quality of life possible. I'd far rather have 20 years of pretty good life than 10 years of really rather painful and immobile existence. I've been through both - 5 years of PMR with no pred, and over 6 years of PMR with pred at various evels of success/comfort. What I have a present is good - and that is fine.
pauline36422 Juno-Irl-Dub
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with calceos and the like. hate chewing them
Anhaga pauline36422
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EileenH pauline36422
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As Anhaga says, once we are post-menopausal we do need to consider even more what is happening to our bones - and unless we are on a good diet and active there is a risk for us all. If you don't like the sort of calcium supplement you are on - ask to try another. There are a few versions, AdCal is another that comes to mind. The one tablet I don't mind is the calcium one - I think mine taste quite nice but I'm not in the UK so it's no use aying what it is! I do know that it comes in a few difference versions - the next most expensive one is said to be easier to dissolve in your mouth, I can't say I noticed enough difference to justify the copay that applies here so I stick with the cheapest.
Juno-Irl-Dub pauline36422
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suesing Juno-Irl-Dub
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EileenH suesing
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I suppose you just have to keep trying a VERY small reduction at a time until it works or you would never know if you could top taking it. A friend on another forum had a really good period last year, she woke up one morning and felt "different" and crept down to zero with no problems. Like me she has rather mixed feelings about making such a big thing about the "success" of getting to zero and didn't say anything for months. Then it came back - and she was back to 10mg. She is now down to 7.5mg again and says she feels so well it is tempting to stick there.
She isn't the first person I've come across who got to zero for a few months and the PMR came back and it feels to me that it confirms my suspicion that the activity of the underlying autoimmune disorder cycles - if it is a slow cycle and the low point happens to coincide with us trying a reduction we will get lower or even off pred altogether - only to have to go back up to feel better as it wakes up again. That said, lots of people DO manage to get off pred but patience is a great gift in PMR!
Juno-Irl-Dub EileenH
Posted
What I'm wondering is - IF your friend had stayed on a' maintenance' dose of, eg. 2.0mg.or 1.5mg., is there any evidence that doing this could have prevented the return of her PMR? Or, does this condition always exist in cycles - short cycle for your pal, and others much longer interval between stopping Pred. and recurrence?
Because I also have OP I'd like to reduce further if I could. BUT if, in managing to stop Pred.quite comfortably, I am MORE likely to have a relapse ( -and have to restart high doses again and. thereby increase my total Pred. intake), is it worth it?
Lord, this is even boring me, please don't feel you have to answer!! J
Juno-Irl-Dub suesing
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EileenH Juno-Irl-Dub
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But I suppose you have to try reducing - and remain at each step of that final few mgs for a long time to be sure things aren't brewing unseen. The people who have struggled to get off that last bit of pred - not always because of return of particularly PMR symptoms - seem more likely to get another dose soon. The others I know who have had PMR twice went for about 4 or 5 years before it reappeared. I doubt you can predict what will happen either way. But it does pay to be very aware - and if there are any signs to pounce and hit it hard.
Juno-Irl-Dub EileenH
Posted