Pain on withdrawal
Posted , 9 users are following.
Hi, I'm new to this website, and I like to know if it is normal to have your pains come back when you lower your prednisone ? I was on 12.5 mgs and went down to 10 mgs and experiencing pain in my left hip, shoulder, and hands. I was diagnosed 11 weeks ago with PMR. I started out with 15 mg mgs of prednisone. After 14 days, was lowered to 12.5 mgs and was told to go to 7.5 mgs was on that for three weeks and pains came back. I decided to try 10 mgs and I found out at that does the pains were still there. What I really like to know are you supposed to have pain when you reduce and for how long should it last.
1 like, 14 replies
tired_lady
Posted
EileenH
Posted
Why on earth were you told to drop from 12.5 to 7.5mg after such a short time! There are two sorts of pain when you reduce which are very similar - just to make life even more complicated.
The pred hasn't cured anything - it is reducing the inflammation caused by an underlying autoimmune disorder making your body attack itself. Once you have been on 15mg for about 4-6 weeks and the symptoms are well controlled (though they may not have gone 100%) you can start to reduce slowly to find the lowest dose that controls the symptoms at present. The smaller the steps the less likely it is you will have difficulty. The top experts say a reduction should never be more than 10% of your current dose - but 15/12.5/10 mg will work for many people. I have never been able to reduce more than 1mg at a time without problems.
If you reduce the dose too low you may suffer a flare of the symptoms as the dose is too low to control the inflammation. If the steps are too big you may suffer pain that is due to steroid withdrawal. They are similar except that in a flare you are usually OK for a short time at the new dose but then pain starts and steadily gets worse. If it is steroid withdrawal it tends to start immediately after the new dose is started and then improves over the next couple of weeks until you are back to where you were before dropping the dose.
Many of us have worked out that a very small drop helps avoid this and we suggest reducing by only 1mg or even 1/2mg at a time. Some of us even spread the drop over a few weeks, taking the new dose for one day and then some days of the old dose before the next single day of new dose and reducing the number of days between the new doses each time. A specialist rheumy has also been trying this for some months - and he finds it works well. I have got to 5mg doing that for the first time in over 4 years, I never managed below 9mg before.
When you are going to try a reduction "overnight" so to speak, it also helps to clear the decks and make sure you can rest and there will be nothing you MUST do - that tends to help the pain too.
At the top of this forum is a post with some links to other sites you may find helpful:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
The final link is to a paper by the Bristol rheumatology group whose reduction plan is slower than most and where they find the flare rate is 1 in 5 patients rather than the usual 3 in 5 found with other regimens. Combining this with our suggestion of not changing from the old dose to the new dose overnight seems to avoid pain at reductions. Their scheme would have you still on 12.5mg after 11 weeks: 6 weeks 15mg, 6 weeks 12.5mg - and then a year at 10mg providing you hadn't had any problems.
Hope this helps
Eileen
EileenH
Posted
Day 1 new dose, 6 days old dose
One day new dose, 5 days old dose
One day new dose, 4 days old dose
continue reducing the interval by 1 day each time until you get to alternating days old/new dose
Then:
one day old dose, 2 days new dose
one day old dose, 3 days new dose
one day old dose, 4 days new dose
Once you are at 5 or 6 days of the new dose you can take the plunge to every day new dose.
I have done this since about 11mg and have not had a day of extra pain. As soon as I get to "new dose every day" I start on the next drop so am reducing continuously and it isn't really any slower than dropping in a bigger step and failing and having to go back up. However, below 5mg I will stick at each dose for a month or so before starting on the next drop.
At the really low levels it has worked very well for a lot of patients. In addition, some doctors like to see a patient staying at 5mg for anything up to 6 months - it seems to allow the adrenal glands to catch up with making cortisol themselves and makes the further reductions more successful.
Eileen
christine26681
Posted
I don't want to go back up to 13.5 mg so am hoping it will settle. Now I am thinking maybe the occasional day at 13.5 mg might help - or maybe start the regime at one day old dose and 4 days new dose.
Christine
Mousemum
Posted
MrsO-UK_Surrey
Posted
Eileen has given lots of good advice. If you were comfortable on 12.5, that is the dose you need for a bit longer to get the inflammation under control. It's such a shame when doctors advise people with PMR to make such steep reductions during which the inflammation gets going again and then makes it even harder to get back on an even keel. If you do increase back to 12.5 and feel much better within a few days, then that will be the proof that you reduced too far and too soon. Good luck.
tired_lady
Posted
janice01811
Posted
Light
Posted
Your suggestion is a good benchmark to work from.
EileenH
Posted
Janice - there is a lady on the forum with diabetes and permanently on pred who I'm sure will answer that.
The sugar levels are often a problem for diabetics on pred as pred can change the way we metabolise cards leading to weight gain and high BS but since the options are closer control or go back to pain it is one that needs care. Cutting the amount of carb you eat is the natural way of dealing with erratic blood sugars - the American Diabetic Association I think, one of the American groups anyway) has now agreed that a low carb Mediterranean diet can be approved for diabetic to lose weight and control blood sugar for up to a year. They seem to think it is difficult to do for more than a year - don't see why, I find it an ideal diet personally and have lost a load of weight (33 lbs) while still on pred and have never had BS problems!
Google "diabetic Mediterranean diet Steve Parker" for good information.
Mousemum
Posted
I am also diabetic and put on a lot of weight. Hated all the photos at my sons wedding which was a shame. I finally joined weightwatchers and with a bit of tweeking to their diet managed to lose 11/2 stones. Not easy but it also seemed to keep my blood sugars under control prob because you don't eat so many carbs. Hope you gat on ok Janice its a difficult balance isn't it. By the way I use Byetta to control my diabetes not Insulin so this may have helped.
Carol
EileenH
Posted
A lady on another forum has also lost 33 lbs using WW and also feels so much better for it. We have had similar bursitis problems and flares - but have also got down to 5mg in parallel using the "Crawl" method ;-) . She's continuing the descent, I'm sticking for now - I don't want to tempt fate.
The forums are the answer to not living round the corner! The forum associated with the northeast of England PMR/GCA UK support group runs like a real live one - we have bits for jokes and photos and stories as well as answering questions and swopping experiences with PMR and GCA. And some of the members are actually able to meet up at real live support group meetings.
afabchic
Posted
I have been poorly for a few weeks but have been following the posts with great interest.
I am still waiting for the dexa scan results. I am continuing to reduce by 1/2mg - I am at present on 4 1/2. (4 one day 5 the next). This works well. After reducing, I have two to three weeks where I am OK, then I get the pains back a little and feel really tired and achey but then after another three to four weeks, I get back to where I was before the reduction. I hope to go down to 4 at the end of the month. I feel really in charge of my PMR now and my spirits have lifted. You just have to persevere and not get too down.
Good luck to everyone and thanks very much again for all the posts, specially Eileen and Mrs O, don't know how I would have managed without you. (or should I say be managing!)
MrsO-UK_Surrey
Posted
Thank you for your kind words and for such a morale-boosting post with sound advice for others 'looking in' who may be struggling at the moment.
I'm sorry to read that you have been poorly for the last few weeks and do hope you are feeling better. However, do make sure you are completely well again before doing your anticipated reduction at the end of the month to allow your body to have completely recovered first from whatever has ailed you. Do hope the rest of your PMR journey continues smoothly.
MrsO