Well told by rheumy to lower pred from 4 to 3 so nervous about it.
Posted , 8 users are following.
Saw Dr. yesterday and she took blood and my counts are down so she is taking me to 3 prednisone and continue methotrexate at 5 pills once a week. See where some who lower get a flairup. Not wanting that so here we go. Have this pmr for 1 year now and want it gone forever. Also I am to lower my vitamin D to 1000iu a day. Please let me here if anyone out there went from 4 pred to 3 and it went great. My sed is 24 and my crp 9 or whatever that is called. Is this good? What is normal?
1 like, 9 replies
MrsO-UK_Surrey marilyn79703
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I followed advice to drop 1mg a month from 10mg. At first everything was fine but I became aware of returning symptoms when I reached 5mg. However, knowing no better at the time (it was some years ago) I continued as advised, dropping from 5 to 4 then 4 to 3, and then hit a brick wall necessitating an increase back up to 10mg. When I reached 5mg again I was kept there for some 5-6 months to ensure the inflammation was completely under control before attempting to go any lower. Although I was then advised that I could start reducing 1mg a month again, I decided that this time I would only do it in half mg steps and tapering over a much longer period. This was after reading Ragnar's post on this site following his experience of being unable to reduce below 5mg until he hit on the idea of only reducing on a couple of days during the first and second weeks, gradually increasing the number of days at the new dose. It may be easier for you as you are taking Methotrexate as well, but I'm not so sure, especially as your CRP is still a little high.. Plus you say you have had PMR for just one year - that is a very fast time to reduce down to as low as 4, especially as flares in the inflammation can be quite common in the first 12-18 months of treatment.
marilyn79703 MrsO-UK_Surrey
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margaret22251 MrsO-UK_Surrey
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my hubby was flabbergasted that i had asked the doctor this, and he told so when we came out, i said Eileen said i had to do this he looked at me as if i had 6 heads. so proud of myself as i would not have done this ever.
I go for some more blood test on the 1st April and see the doctor 2 days later.
cindy63197 marilyn79703
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EileenH marilyn79703
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Marilyn: I'm in the process of trying 4 to 3 again, it didn't work the last twice, aches came back. I'm (obviously) using the same reduction as I always do. The slow reduction I recommend helps smooth the drops as no reduction should be more than 10% of the current dose - that is 1mg at 10mg but by the time you get down to 5mg it is only 1/2mg so really each drop is better done as 1/2mg steps. It is posts 4 and 5 of this thread
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Your bloods are fine - but that is most likely because your dose of pred is enough to manage the inflammation. Unfortunately some doctors appear to think that means the PMR has gone! Not necessarily so so be very careful and watchful with the reduction.
vanessa66630 EileenH
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EileenH vanessa66630
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If the pain started soon after trying the "dead slow and nearly stop" then it could be withdrawal but that is unlikely if you really went as slowly as that. If it took a week or two to start it is more likely to be the PMR symptoms returning because the dose is a bit too low. If you got to, say, alternate days 10/9 and it was OK then you have reduced some and could wait a bit at that before trying the other half of the 1mg reduction. That is the point - you can stop at any point you want without completing the entire 1mg reduction.
vanessa66630 EileenH
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EileenH vanessa66630
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Often if it is just a localised problem it can be better dealt with with other therapies and that allows you to then reduce the PMR pred dose further than you could otherwise. Bowen is easy to access without a doctor. Other options would be a physio or sports massage therapist who knows what they are doing with PMR. Or a cortisone injection locally - that needs a doctor. It is beginning to be realised that it isn't all "PMR pain responsive to a low dose of pred" and that by identifying and dealing with local problems the overall picture is improved.