Pain on withdrawal

Each time I have reduced my dosage I have experienced muscle pain and tiredness. I have been on 5mg for quite some time but am unable to get the dose any lower. May be I will try again in a few months. The doc leaves it up yo me to regulate my dosage. So don't give up just reduce by 1/2 mg at a time and don't try to rush it. Best wishes Kathleen

Hi Janice and welcome.

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

Kathleen: some of us have developed a very slow reduction scheme. It was originally worked out by a Swedish gentleman who struggled to get below 3mg without a flare of pain. He returned to 5mg and from there reduced in a similar way to this:

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

This regime is really useful to know Eileen. Three weeks ago I reduced from 13.5 mg to 12.5 mg. It was OK until I started experiencing pain in my right shoulder a week ago. This gradually spread across both of my shoulders and upper back and now the pain is very bad.

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

Hi Ive been reducing by 1/2 mg when I do it but your way seems a lot more sensible Eileen will def try it . I started at 30mg 21/2yrs ago. got down to 13mg then had flare up back at 18mg now son going to take it more slowly. Great to have a bit of sensible advice as doctors just say we don't know much about it adjust your dose as you think fit.

Janice

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.

Thanks Eileen - that sounds a good idea. I will try that method in a few weeks as my leg muscles are not too good at the moment. Always helpful your advice.

Thanks for advice I will go back to 12.5 mgs as had no pain at that dose. Am a diabetic and my sugar has gone up to 289 and a few times 354 at 10 mgs don't know how high it will go on 12.5 mgs I was given Novolog flex pen to deal with it but doesn't seem to control it much .One of my biggest problems is being diabetic and now having the pain coming back. Dose anyone also have this problem and how do they deal with it ?

Thank you for clarifying this issue, Eileen. I am about to start reducing from 15mg now and my doctor recommended alternating 12.5 and 15mg for 2 weeks and see how it goes (we don't have tablets of 1mg where I am right now).

Your suggestion is a good benchmark to work from.

A good pharmacy should be able to sell you a pill cutter - you can cut ordinary plain white pred tablets in half, they're a bit small to do more though I know people who have done so. If, however, you have an enteric-coated form of tablet you MUST NOT CUT IT! The coating is to allow the tablet to pass through the stomach unused to allow it to be broken down further down the gut and avoid irritating the stomach - break the coating and that advantage is lost.

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.

Hi Eileen I wished you lived near me for coffee and advice. You seem a very sensible well balanced lady.

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

Mousemum - yes, I have wedding photos from 18 months ago that I hate. After losing 33 lbs I am STILL just into the "obese" class, a couple of pounds to go to be merely "overweight" but that is almost all since the wedding. AND I was mother of the bride - fat and on crutches.

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.

Hello all

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!)

Hello again afabchi

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