restarting tapering after a flareup
Posted , 13 users are following.
Hi, I am wondering how long most of you wait following a flareup to start tapering again.
I am on 15mg day of Prednisone and have not been able to reduce without flareups for the past 6 to 8 months. In mid June I decided after another flare up that I was going to have a good summer and would stay on 15mg for July and Aug. July has been good, the only time I have a problem is when I over do it and forget about energy conservation.I do not actually forget about it but feel good so decide to ignore it. I always end up paying for it with one or two days of extreme fatigue and generalized soreness.
Anyway, so you have a flareup, go back to your old dose, feel better in 2 or 3 days, then do you wait a week, less, 2 weeks to start reducing again?Also with the ?flareup do you wait a couple of days to see if it subsides. If so how long should a person wait.
Thanks
Carol Ann
0 likes, 13 replies
EileenH carol_ann35477
Posted
How do you try to reduce - i.e. how big are the steps you try? Have you ever got below 15mg?
carol_ann35477 EileenH
Posted
HI Ellen, Initially when I was decreasing I decreased as my Dr. said, and I think it was 5mg every 3 weeks. This however was not working at all and I went on line looking for more information and came across this site. Initially I started decreasing using the dead slow method by 1mg., which worked until I got closer to 15mg. I had to decrease the reduction and the last few times it has been by 1/4mg. only. However I have tried three times and cannot seem to get below 15 without a flare and am very tired of having the flares. Each time seems to take longer to get over it and start feeling better again. I have been at 15 for the last 6 weeks following a flare and approximately 2 weeks to feel better after increasing to 15 again. I have decided to stay on 15 until the end of August and then will try to decrease again.
I do not seem to be able to get below 15. Even at 15 I am not 100%. I have to plan my activities, and try to have a rest day between them. Some of it I suppose is from deconditioning, however I honestly feel it is mostly from the PMR.
EileenH carol_ann35477
Posted
Despite what doctors seem to think, the bioavailabilty (the amount we absorb of an oral dose) of pred varies from 90% at the top end down to 50% at the low end. People who don't absorb as much appear to need a much higher dose. I wonder if your doctor would try deep intramuscular injections of Depotmedrol? That has 100% bioavailability and is now suggested in the 2015 REcommendations.
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Recommendation 5. I know several people who have managed both PMR and GCA successfully like this. Some claim the side effects are less - and one assumes a lower dose than oral pred will manage the symptoms as well as the repeated tapering that occurs naturally must be fairly good for the adrenal function.
Michdonn carol_ann35477
Posted
Hi Carol Ann, I am a bad boy and have had a number of flares some very bad some not. Here is how I handle a flare, whatever dose, double it for 3 or 4 days, not under control triple it for 3 or 4 days, still not under control quadruple it 3 or 4 days. Only once did I have to quadruple. Once I feel stabilized reduce reversing the schedule. I never reduce if I have any PMR pain. Once back to where I started stabilize at that level and start a taper to my next objective. I taper using a modified DSNS method. Good luck on the rest of your PMR journey. Try to stay positive, active with a smile. 🙂
carol_ann35477
Posted
Hi Mitch, thanks for the comments. I have always gone right back to my initial starting dose, but will try your way next time.
It is interesting to know that it can take you up to a week to stabilize. I have found that it takes awhile as well.I do not like the back and forth and not feeling well. That is one of the reasons why I am wondering if there is any consensus on how long to stay on the stabilizing dose before starting another reduction.
Am always trying to stay positive, however it can be a little difficult at times as PMR is also only just one health problem at the present.However I know things could always be worse.
Michdonn carol_ann35477
Posted
Carol Ann, unfortunately we are all different each PMR case is different and Prednisone act differently in our bodies. We have to learn to listen to our bodies, that is easier said that done. Then we have to experiment a little to understand the best way to control the inflammation. I do know that trying to rush off the Prednisone is a big mistake. Also trying to do too much exercise is a problem. I am always doing too much and pay the price. You listen to your body before you taper, do not taper if the inflammation is there. I also believe that diet can help cause the inflammation, some ingredients we normally eat are irritants, sugar is one. Listen to your body what is causing flare!
Good luck, 🙂
judith87642 carol_ann35477
Posted
Carol..l went to my Rheumatologist at MAYO this past Tuesday..I tried to reduce my own Prednisone, as I hate taking it...I Went from 10mg to 5mg, then 4 mg..At 10 mg, all the pain was gone..At 5mg and 4mg, I was able to function, but with pain...The doctors convinced me to go back up to 9mg and only reduce the dosage by 1mg each month in order to have the best chances of remission with no pain..I do trust them and I following their regime...
EileenH judith87642
Posted
Not that how you reduce will achieve remission on its own - that will happen when PMR decides it will go and not before. But slow reduction to find the lowest dose that manages the symptoms as well as the starting dose will avoid problems in the meantime. You aren't heading relentlessly tp zero - you are looking for the lowest dose. It might be zero straight away - but that would be very unusual. PMR requires a median duration of management with pred of 5.9 years - from a study done by Mayo rheumies.
Michdonn judith87642
Posted
Judith, with each case of PMR different and each of us being different you might find the best method of reducing is the one you develop for your self. Mine is a modified DSNS, with small reductions in the amount. I been PMR pain free for over two years with the exceptions of flares. It is not a race just take it easy. 🙂
Elizamc EileenH
Posted
5.9years!!! Do you have a link to the study paper please Eileen?
EileenH Elizamc
Posted
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
The first two are links to articles about the research - and there are links to the original source in the articles but of course it is behind a paywall! The third link is a video of a top rheumy being interviewed at the meeting where the work was first presented.
That means half of patients get off pred in just under 6 years - half take longer. But I think that the really significant figures they established are that some 40% of patients still require some pred after 10 years, albeit at low doses.
diana21296 carol_ann35477
Posted
When did you start pmr and at what dosage?
susan91476 carol_ann35477
Posted
I am interested in your question - because I have posted a similar one - I have had PMR for 4 years, and have been pretty successful in using the DSNS method of reducing - and made it down to 1mg before I had my first flare and going through it now. I am wondering if you have to start dosing again at the original dose - thanks for letting me follow along