need some advce
Posted , 9 users are following.
I am about to taper down from 15 mg. prednisone. I have tried this before, but think I went too quickly and at 13.5 mg pain and stiffness returned. I don't know whether to taper to 14.5 mg or to 14 mg prednisone as my first taper. I have all the guidelines from the forum to help me with the timing of the taper, and I know that I shouldn't reduce by more than 10%. However, I want to be really cautious and make sure I don't have increased pain returning as a result of a taper. Would it make sense to decrease by only 1/2 mg at a time?
2 likes, 23 replies
faye______00403 Padada
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really lucky that I don't have too much pain except in my legs.
How often do you have a sed rate done? My doc has me have
it checked every two or three weeks and depending on results
I either increase or decrease pred....I'd sure like to get off this
med....
Does anyone else have a sort of numbness (not pain) in their feet.?
Sort of asleep feeling? No pain, just funny feeling. I can't decide whether it's from PMR or herniated disc in my back......
tina-uk_cwall faye______00403
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MrsO-UK_Surrey faye______00403
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faye______00403 MrsO-UK_Surrey
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I can live with it......Some guy wrote a book titled
Getting Older is not for Sissyies and don't we all know that?
tina-uk_cwall Padada
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good luck, regards christina
faye______00403 Padada
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of weaning is to do it slowly......sure gets to be a pain in the rear
doesn't it?
LisaCACO Padada
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EileenH Padada
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https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
In the first post of this thread you will find a load of links to useful sites and reliable information.
In the replies part my very slow reduction scheme is described in detail with explanations and finer points. You can stop at any point and whether you do a 1mg or 1/2mg reduction each time is up to you. Even 2.5mg reductions for the people who cannot cut their enteric coated pred work with this - you just slow it down by repeating steps if necessary. It has worked for a lot of people.
Often the apparent return of symptoms is actually "steroid withdrawal" and slowing down the reduction helps avoid that.
Faye - I had foot pain, mine felt like standing on sharp pebbles but they also felt strange.
It isn't recommended to go up and down with pred dose simply on the basis of the sed rate. A lot of things can affect it and once you get into a yoyo pattern with reductions it becomes more difficult. Before or a couple of weeks after a reduction is probably enough and preferably looking for a trend rather than absolute values - and small reductions each time may also help.
faye______00403 EileenH
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When I was diagnosed about year and a half ago my doc
started me at 20mg......i actually got down to 4mg per day and
was hopeful I could get off the pred. But.....along came the
dreaded "relapse" my doc warned me would probably
happen. I had a horrible attack of sciatica the first of the
year and during that the sed rate went back up so I'm
once again on a weaning program and doing well with it.
If you don't follow sed rate what do you base increasing
or decreasing pred on? By the way....I don't have any
of the side effects I read about....again....really lucky!
EileenH faye______00403
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Originally I was put on a 6 week taper: 2 weeks each of 15, 10 and 5mgs then stop. It was a miracle in 6 hours and the pain was back as bad as ever, if not worse, 6 hours after missing the first 5mg tablet. I'd been OK at 5mg too - but it then took me 4 years to get to 5mg again! Once you mess about with doses it can become very difficult.
lodgerUK_NE faye______00403
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As Eileen says, Symptoms- your ESR and CRP whilst they can be good as guidelines, that is all they are, they can both or singly be raised for other reasons - all they tell you is 'something is going on'.
If you follow this link https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and visit the website you can read Ragnar's story. This gentleman led us to explore reduction and how to make it easier. There is a Dead Slow and Stop and one called Tortoise and Hare. They have been used successfully by many people, although they have both been devised by patients.
faye______00403 EileenH
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me that's a very low dose and after reading some of these
blogs guess I'm pretty lucky. My doc always kind of leaves
it up to me always saying "how do you feel?" Any pain?
Since I have some herniated disc in my back I'm not always
sure which thing is the problem at any given time.
tina-uk_cwall faye______00403
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Padada
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I shall go ahead with the .5 mg. reduction even though it seems like such a small step. But I feel that avoiding the yo-yo possibilty of too fast a taper and then back up to larger dose is of utmost importance.
I have never had an elevated Sed Rate or CRP so I must be one of the 20% that the UK article mentions. My rheumatologist says that statistic is too high and she thinks it is closer to 10%( but I believe the UK experts since they are far advanced in studying PMR).
So I will simply go by an absence of pain and stiffness as to whether my taper is successful. Is that a good enough indicator of success? By the way, I still have a small amount of achiness but no stiffness, so I think I am normal in that regard. Thanks again everyone. This forum is so helpful.
tina-uk_cwall Padada
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if I remember you are newly diagnosed, I've just been through my PMR diary and it was a long time before most of the PMR pain went away for good and the pain I was left with was muscle pain from over working etc.
Good luck, christina
EileenH Padada
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And does it matter whether the figure is 20% or 10% if you are the person with the problem? It is definite that there are some people who don't have raised bloods while others do. The doctor shouldn't be concerned whether it is 1 in 10 or 1 in 5 - for you the problem is for 1 in 1.
Padada tina-uk_cwall
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You also said that it was a long time before MOST of your PMR pain went away for good, so I take it that during your tapers you still had some lingereing pain. Am I understanding your situation correctly?
I guess I am still not clear as to whether I should be looking for a total pain relief as I proceed or if a partial pain relief is acceptable. Thank you for your input to me.
I want to reduce my dose of prednisone because of the side effects that it causes. I have loss of appetite, taste, elevated BP, anxiety and oral thrush since starting prednisone. However, the prednisone has stopped my pain and stiffness by at least 90%. Thank you for any advice or comments.
tina-uk_cwall Padada
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i would attempt to taper. You will know if you are experiencing a flare because all the deep penetrating pain returns. I experienced a flare when reducing from 9 to 8mgs just prior to Christmas 2014 and believe me to once again wake up with pain in my neck and hips when that pain had all but gone was heart breaking.
i have just successfully reduced from 9 to 8.5 and I once again experienced some very very mild increase in pain. However, I followed Eileen's go slow and almost stop reduction plan and over time the pain went and has not returned.
there are some of us that following diagnosis and when on prednisolone are very lucky in that most of the pain goes very very quickly and we live our lives whilst still with PMR and on preds almost back to our old self. However, there are definately some whose PMR pain is greatly reduced because of the preds but unfortunately for them still experience considerable pain. Why? I simply don't have the answers. The trouble is that this condition affects us all differently and that includes how and to what degree our bodies respond to the condition and the drugs that are used to control the inflamation. Also you have mentioned the magic 90% reduction in pain and as many say, that may be the maximum reduction in pain they'll ever experience.
you say you are on 15mgs. The usual taper down from there is to 12.5 for a minimum of 6 weeks. If you are still a little anxious why not taper by 1 mg each time , stay on that new dose for 6 weeks and then when you hit the magic 10mgs then follow Eileen's reduction programme, which I follow but only taper by .5. Can I just ask, what reduction plan has your GP suggested and do you ever have blood tests to see how your ESR/cpr levels are doing. Regards, christina
EileenH Padada
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If you follow this link to another thread on here you will find the way I have reduced since 15mg - with no discomfort or flares:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
We ALL want to reduce our pred because of the side effects - but don't try to rush or ever force a reduction thinking it will be oK. If you do that you will end up in pain again and needing a higher dose all over again. It isn't worth it!
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