Struggling with tapering

I was diagnosed with PMR and GCA in July 2015 and started on 40mg of Prednisolone. Following the tapering programme given to me by my Rheumatologist, by December 2015 I had reduced to 9mg without any problems.. too fast I hear you cry. Due to a head injury and an overnight stay in hospital, a consultant increased the Pred to 15mg to deal with the trauma, despite the fact that the trauma itself caused me no problems whatsoever. I tapered back down to 9mg by April 2016 when I started to feel unwell with the original symptoms returning, although not as severe as originally, which was backed up by an increase in my ESR and CRP levels. Weekly visits to the GP ensued and each time it was suggested I increase the Pred by 1mg or 2mg each time, but for 6 weeks this made no difference whatsoever, until in the end it went up to 20mg before making me feel better. I then resumed a taper programme with the intention of achieving 1mg a month, so that by December 2016 I was down to 10.5mg and feeling OK for most of the time. Since reducing to 9mg in February I have really struggled with a lot of pain and discomfort in the mornings, but have stuck it out because I know that I am going to feel better by lunchtime and I am desperate to reduce the steroids. Today I feel defeated and have to admit that the only way I am probably going to feel better is to increase the Prednisolone dosage, which I really didn't want to do for so many reasons, including my Rheumatologist wanting to put me on Leflunomide imminently.

My reason for boring you wonderful folk on this brilliant forum with my background info is to ask for your opinion, as in view of the struggle that I had last year with a flare up of symptoms and having to increase to double the amount of Pred that I was taking before I felt well again, I am not sure that increasing from 9mg to say 10.5mg is going to make much difference. Should I therefore consider taking a larger dose for a few days, which I understand from an earlier feed on this forum is possible, to control the current inflammation then drop down to say 10mg/10.5mg? If I am completely honest, the last time I felt well and fairly symptom free was at 12.5mg, which was in October 2016 and this was reflected in my low ESR and CRP inflammation markers. I have monthly blood tests for ESR and CRP, both of which have been steadily rising as I have reduced the Pred each month. I can almost guess the blood test results each time from the way I feel.

I apologise for my lengthy post and Thank You in advance for reading my post

Best wishes Liz

25 Replies

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  • Info here from PMRPro:-

    healthunlocked.com/pmrgcauk...

  • Thank you for sending this link, most appreciated, and for responding so quickly to my post.

    Regards Liz

  • Whatever you do, do not tough out the pain. It will not help you reduce and may even make reduction slower. You also have to put up with pain which is unecessary. Why not go back to 12.5mg where you were comfortable? You can actually reduce quite quickly to say 10mg or just above if you do it over a short period.

  • Dear piglette

    Thank you so much for your sound advice...duly noted and much appreciated.

    Regards Liz

  • Hi Liz,

    No point in saying anything, other than you've diagnosed the problem yourself.

    Agree that if going up the odd mg or two didn't work, you need to go back up to last dose appt which you felt okay. There seems to be some discussion recently whether you should add 5mg on top of that dose as used to be the recommendation, or just try the last "good" dose! As you've had a lot of too-ing and fro-ing if it were me I'd be inclined to go slightly higher, maybe to 15mg.

    Whatever dose you find settles things down, then stay there for a couple of weeks at least, maybe a month. Then, suggest you continue to have monthly blood tests, but don't decrease if you have symptoms and if the blood tests are rising.

    Suggest you discuss with GP or Rheumy (whoever is monitoring your progress) and suggest, strongly!, that you reduce at a slower pace for the foreseeable future.

    If you get things under control at 12.5 mg or 15mg you may be able to drop back down to 10mg fairly quickly, but just be aware of what's gone before!

    Good luck.

  • Dear DL

    Thank you so much for responding to my post and for your very helpful advice, as always. I know that it all seems very much to be common sense and I almost know what the responses are going to be before I get them, but I so appreciate the support from the people on this forum who really know and who have experienced this very long and arduous journey. I am due to see the GP next week, including a blood test, so hopefully I can make some progress to enable me to get back to some sort of normality.

    Take care Liz

  • I note you say you have to wait until lunchtime to feel better. Do you feel pretty good by then? Some people have been able to deal with that problem by taking some or all of their pred in the evening so that the anti-inflammatory effect takes place before they get up. I'm sure someone who has done this, or at least understands why this should work for some people, will be along soon. Something to do with the rate at which we metabolize pred. Some of us are much slower than others, some people, you may be one, find their dose doesn't last 24 hours so taking a percentage as usual in the morning, and the rest approximately twelve hours later, seems to benefit them.

  • It takes about 6 hours after taking the Prednisolone in the morning for me to feel much better, although not always completely pain free, Your suggestion to split the dosage is worth considering as it does make a lot of sense. I will definitely give it a try.

    Thank you so much for your response and support.

    Regards Liz

  • I hope someone experienced with dose splitting comes along to give advice. I think the standard to start with (people often tweak this) is to take 2/3 of the dose in the morning, and the rest in the evening. Always with food, of course, and avoiding taking any calcium supplement at the same time. All the best!

  • Thank you so much for your help and support.

    Regards Liz

  • Hi Liz, I am currently splitting my dose and as has been suggested...adjusting it a little. My full dose is 13mg at the moment, down slowly from 15mg. I was feeling ill in the morning but better by about 2pm so decided to try and split. It's still trial and error but at the mo I take 3mg at night and 10mg in the morning. It's better as far as the discomfort goes but I am sleeping soooo badly!! I'm going to try taking my evening dose with my evening meal and see how that goes. I was diagnosed with Temporal Arteritis 2 years ago. Good luck.

  • Some people find even taking part of the dose in the mid-afternoon helps the morning problem AND the sleeping one.

  • Thanks PMRpro....I can give that a try.

  • Thank you for sharing this, I am going to try splitting my dose to see if it helps. As you say, it is trial and error to get to the place that best suits us.

  • "a consultant increased the Pred to 15mg to deal with the trauma," - it wasn't the trauma directly but the stress being put on your body by the accident and your adrenal glands being unable to respond adequately.

    If your blood tests are rising and you have symptoms, there is only one answer: more pred. And yes, a few days of 15mg followed by an immediate return to 12.5 and see how you go.

    Otherwise it has all already been said- and Heron's suggestion of adjusting your dosing seem eminently sensible to me. You could try taking it very early in the morning - the sooner you take it after about 4.30am the less inflammation it has to deal with. Ot take it immediately before bed - no morning stiffness! If the effect doesn't last for 24 hours then maybe about 2/3 and 1/3 would improve your result. Most people take the 2/3 in the morning, the rest later, when later varies. Some people can't sleep with pred taken too late in the day. Experiment a bit.

    You didn't drop from 10.5 to 9 directly did you? And even if you didn't - the time scales seem very short to me...

  • Thank you PMR Pro for your response and for your suggestions to aid my current tapering issues. I will definitely try this. I was last on 10.5mg of Prednisolone in mid December and reduced to 9mg by mid February, but this was obviously too fast for me. Once I have got myself back to feeling well again I will be tapering much slower and in consideration of my blood test results and how I feel.

    Regards Liz

  • Hi Liz,

    Sorry to read your story - you certainly have my sympathy.

    Seems to me you have already had some excellent advice from this forum, and I am not going to add to that.

    From my own experience (PMR since Dec 14, and now at 5.5mg daily), it actually took me six months to get from 11.5 to 9mg. It was very frustrating, but I learned that lots of us experience difficulties tapering down at around the 10 mg level. In the end I achieved it by reducing very gradually in half mg steps.

    Also, like you, I am one of those for whom it seems to take from 4 to 6 hours for the preds to kick in. As Dorset Lady suggests, I eventually resolved this issue by splitting the dose 50/50 morning and bedtime. It took a lot of trial and error, but it has worked for me, and I still do it now.. Having said that, we are all different, and what works for me might well not work for you!

    Anyway, good luck, and I hope you manage to taper more successfully in the future. Don't forget, you will need lots and lots of patience!!!

  • Thank you so much for responding to my post, it certainly helps me consider all of the options and I will definitely try splitting the dose morning and evening to see if it helps.

    Regards Liz

  • Hi Liz, I am a 'splitter' currently on 8mg/7.75mg. I have enteric (coated) pred at 5mg and 2.5mg and a supply of 1mg uncoated which gives me scope to cut tiny amounts as I taper. I'm finding it difficult to get below 8mg at the moment so slowly,slowly does it. At breakfast I take 5mg + half an uncoated (or a quarter on alternate days), and 2.5mg at bedtime. The coated variety starts to work around 6 hours later in my case, so the 4 a.m. inflammation and the pred arrive around the same time to commence battle...

    Trying to arrive at the lowest level to manage the inflammation is tricky, I got to 7mg then had to go back to 9mg - the great thing is not to think of it as a defeat but as necessary and it (PMR) is not in control of you, you take control of it. Some days this can be a difficult mind-set to achieve :-) Good luck, Liz, you're not alone !

    /

  • Thank you for sharing your tapering experience, it really does help. I have had some great responses to my post and some really helpful suggestions, which I am definitely going to try. I wish you luck for the future and hope that you, and the rest of us.battling with these conditions, are soon free of them. Regards Liz

  • LizMitchell, You've received a lot of great advice. Good luck in finding the right mix of quantity of prednisone and timing.

    Like you I started on 40 mg. However, three years later I'm now only at 11/10.5 on the Dead Slow Nearly Stop reduction plan. Over the last three years I've done it all. I've varied the time of day I took meds from twice a day morning and night, twice a day morning and lunch time, all at once at 2 am in the morning, and now back to first thing in the morning around 6 am. The main reason I split the dose and took it at 2 am was to avoid the steroid brain fog that I felt at the higher doses.

    Over the first two years I also learned that I'm very sensitive to reductions and after two flares, the last one causing me to bump to 15 mg from 10.5 a year ago, I decided to reduce by .5mg. Because of the life style I lead bouncing between homes in Northern Canada and Panama I may hold at a level for two to four weeks before attempting a reduction.

    I want to be off prednisone and rid of all the side effects as much as anyone, but I DO NOT want another flare!! If that means being the slowest tortoise in the race so be it.

  • Hi there.

    I too started to get morning stiffness/pain at around 10mg so started taking the pred at 2am or thereabouts so it was in my system by 4am ish. (Advice from PMRpro). Made a big difference to how I felt in the morning without having to go up to higher dose. Sat on it for awhile and now on 9mg with the dead slow method. I take it with some yoghurt in the dark without really interfering with my sleep. Worth a try. Take care cc 🙆 Ps I don't set an alarm but am often awake in the night so that's why I put 2am ish

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  • Thanks good to know. 😎

  • Thank you for your response, I really appreciate it. It has given me a lot of options to consider from all of the responses I have received. Take care Liz

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