Problems with tapering Pred

First of all I'd like to thank you all for all your advice. I could not have gone through this without you. My doctors are great but this year they tried to rush me to reduce my Pred. I knew it was wrong and you all confirmed it. March 25 I reduced the Pred to 7.5 mg, felt all right but progressively I got more stiff, in pain and very tired. Within a week I could barely get out of bed in the morning, so I increased the Pred to 8.75 mg.

April 21st I reduced it again to 7.5 mg, return of the pain and stiffness was very gradual and thought it would go away but by May 24 I couldn’t move and was very tired so I increased the dose to 8.125 mg. -- 5.625 mg in the morning and 2.5 mg at night. By the end of the week I was feeling great again with no pain. July 7 reduced Pred to 7.5 mg. and felt great, July 17 reduced Pred to 7 mg but by July 25 pain came back. July 29 I increased to 7.5 mg. Sorry for the long, winded story but in a nutshell I can't seem to be able to go down to 7 mg. Last time I tried to reduce the pain came back in about 3 weeks. This time the pain came back in 1 week. Could this be Pred withdrawal? What should I do next? Sad to say but I know my doctors will only shrug their shoulders if I ask them this question.

35 Replies

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  • I hope someone comes along with some advice for this one. I appear to be stuck at 7 mgs with creeping stiffness. My plan B is to rest here a while and see if all settles - trying to avoid physical and mental stressors. I fear the prescribing of steroid sparing drugs. But this is maybe what they do.

    This will only help in that I am stuck in the same place. Good luck!

  • Hi!

    You're by no means the first to get problems around the 7mg mark.

    I first got down to 7mg in April 16, then spent the next seven months yoyoing up and down from 8mg to 7.5mg, tried again at 7mg, then had to go up to 9mg before I finally got below 7mg at the end of November 16.

    You may not like it, but I think you will need to be very patient! At the end of the day your body will tell you when it is ok to taper down, and there is absolutely no point in trying to force it! The. PMR moves at its own pace, which can be frustratingly slow.

    Hopefully, you will do better than me, and get down a bit quicker, but don't bet on it.

    Good luck

    Paddy

  • Never easy, have you tried DSNS method which could help smooth over the 0.5 reductions. To assist there is a very good piece of software which covers all conditions. This has been created by a university student and is well worth using.

    the link is:http://steroidtaper.azurewebsites.net

    You need a document to show you how to use it. Write to Sandra and she'll send you the PDF: sandra@steroidtaper.com

    Don't give up but as they say be patient, it's not a race.

  • Thanks for this David. Yes, I have gone for the dsns tapering method twice in the last two and a half years, but, on both occasions , have had to increase again thereafter!

    Generally speaking, things are going ok, so I will just take it as it comes.

    Paddy

  • Charlie1boy this is exactly the kind of advice I would have given to someone else. I agree with you, it's just that sometimes we are so close to our own situation that we don't see it clearly anymore. We have to be reminded by someone else to step back. Thank you for that!

  • Hello kulina,

    It does sound to me as if the level of inflammation you have may require more than the 7/7.5mg you are attempting. The way I would tell a flare apart from withdrawal is that when I try a step down and find it gives me increased pain within a day, it's probably due to withdrawal. I then persevere for a few more days, and if it really is withdrawal, the pain eases again. On the other hand, if when I step down and find it feels fine but after a few days I then start to get increased discomfort leading to more pain, it's due to an inadequate amount of pred and I'm just not ready for that step down. (Sorry, that's very long-winded, but hope you understand!)

    So far I've not been able to get below 10mg, so I can't comment on the 7mg sticking point, though from my reading of various posts I can see that it can be a hurdle because of the adrenal glands needing to begin working again, and sometimes they are reluctant, or even incapable. I understand there's a test that can determine the state of those glands - hopefully some more experienced fellow sufferers will be able to add info about that test.

    My own sticking point is the 10 - 10.5mg mark, and I'm now on my 4th attempt to get down to 10.5, using DorsetLady's slow tapering method. So far so good, but I suspect I'm hovering at the amount of pred I currently need to control my level of inflammation. I'm determined to believe I'll get down lower eventually, but it is hard to accept that this is not something totally within my control! Hope you manage to get past your obstacle soon.

  • Thank you for telling me the difference between Pred withdrawal and a flare. I will keep it in mind. Good luck to you on your tapering journey.

  • That is good information and I hope I can remember it or find it here Again

  • Hi kulina,

    The 7mg mark can be very difficult for many people. It's around the level your own adrenal glands should start working again, above that the Pred has supplied more cortisol than your own body produces so they've had a nice rest!

    As others have said, it's a time where you have to be very patient, and be a bit devious into fooling the body you're not actually trying to reduce - and you do that by the tiniest amount you can reduce by (I realise that's a bit difficult depending on what tablets you're prescribed, don't think you can get 1mg in US, whereas we can and so can cut them into 0.5mg) and using a slow tapering plan that takes weeks to get from old to new dose.

    Pred withdrawal usually affects almost immediately after new dose, say a day or two.

    Sometimes it's a simple as just not being the right time. In the past I've tried to reduced, not felt good, not a flare, but just uneasy, so I've gone back to previous dose, given it a couple of weeks, and then tried again, and it's worked.

    Sometimes we put pressure on ourselves to reduce because we think we should, or someone says we should, and if the body isn't ready all that does is stress us out, so what happens, the PMR reacts to that stress.

    Stick on the dose you feel okay at for a while longer, and then when you feel okay try again. Just do it on the day, don't say "next Monday I'm going to do it" because between now and next Monday you be thinking - is it going to be okay this time? And what will happen? You'll get stressed again.

    Good luck.

  • Thank you for your advice DorserLady. I guess patience is not one my virtues. :) PMR has taught me a lot, including patience, going with the flow, stopping and smelling the roses, etc., etc. I just sometimes forget all of that and end up pushing myself as if I'm back to normal. Thank you!

  • We do have 1 mg in USA, I just reduced to 61/2mg this morning. I've been on 7 for months. Tried it in April, had to go back up to 7mg. It's amazing how 1/2 or 1 mg. makes a big difference. Your so very kind with all your great advise.💕

  • Hi,

    Thanks for info on 1mg tablets.

    Yes I agree 1/2mg does make a big difference, especially as you get to lower doses.

    Good luck for future. But if you do have a further problems you can always try a slow taper - if you're not doing that already. I found one I devised worked well from about 5mg down - took about 5 weeks to get from old dose to new dose. Then if I felt okay I just went straight into next taper. Of course, you can always put on hold if necessary - I did that if I knew something stressful was on the horizon - like going on holiday etc.

  • Hi kulina

    From experience, and what I've learned from this excellent forum, it sounds like you're hovering around that critical threshold of preds (7 mgpd +/-) where your adrenals should be getting back to work, but will protest loudly if they are pushed too hard. So, yes, pred withdrawal / adrenal insufficiency sounds most likely - especially the fatigue.

    Even with the most gentle of tapering methods, getting the dosage 'right' (i.e. as low as possible but high enough to keep the symptoms under control) seems to be very much a case of Trial and Error at any stage. And, if you 'overshoot' in reductions, (too much and / or too quickly) the symptoms return. I think the dilemma for many of us is that we can't really know what's 'right' without some experimentation. Also, any or all of many other factors like stress, infections and over-activity physically can all conspire in putting the adrenal system under extra 'load - even when on a level dosage of the preds.

    On the positive side, you seem to have assessed quite accurately what's the 'right' dosage for you at the moment. Like you, I hovered around 6 mgpd for several months and couldn't reduce further without returning symptoms (extreme fatigue especially), but then I had quite a dramatic easing-off of all of the symptoms and am now down to 4 mgpd quite happily (see my recent post about this).

    As others here say, I think the bottom line is that it's best to stay on whatever dosage is comfortable for you symptoms-wise - and if you try to reduce unsuccessfully, then nudge the dosage back up again for a while and be patient (easier said than done, I know!). As Paddy says, PMR goes at a pace of its own and your body will tell you when the PMR is subsiding.

    Hope this helps!

    MB :-)

  • markbenjamin 57, you're so right, I guess the word is experimentation. I've read a lot about it on this forum but my doctors make it sound so cut and dry I don't dare tell them I'm "experimenting". They thought I could go from 10 mg to 7 mg back in March! Can you believe it? Even as a newbie, I knew that was crazy. Experiment I will. Thank you for your advice and good luck on your journey with PMR. Garine

  • Thanks Garine

    Yes, so many doctors (and a few rheumatologists!) seem to advise a standard reduction regimen and encourage their patients to get-off the steroids as soon as possible. I think this is probably because of the many potential side effects of long-term steroid use?

    If only some of these medics could experience PMR and try steroid tapering for themselves - they might change their approach!

    MB :-)

  • I agree. They need to be in our shoes for a while. When my rheumatologists, which by the way are well respected in the field, wanted me to taper from 10 to 7, I was reluctant and asked why such a drastic drop. They said to "experiment" and see if my body will react well. Experiment? Of course they weren't the ones to be in pain, I was. So, I said ok and went home and reduced very slowly. Never told them. Even with the best doctors I just don't know what they are thinking!

  • Are you in the US Garine? It might be because they haven't read (or don't know about) the British Rheumatology Society guidelines for steroid tapering (i.e. 'maximum advised reduction of 10% compared with the previous periodic dosage' - or something like that).

    I think I read somewhere that PMR is even less well known in the States than in the UK / Europe, so that might explain why their interpretation of 'experimenting' is different to the ones here! Also, it seems that many family doctors / GPs (either in the US or the UK) don't encounter PMR very often - and so they don't have much experience of how patients struggle with steroid tapering.

    Either way, you're in the best of company here - a goldmine of wisdom and support :-)

  • Yes, I'm in the US and my rheumatologists are at Tufts Medical Center in Boston. One of them is a student and I like that, because she's new she doesn't miss a beat and we communicate very well. She looks at everything! She in turn is supervised by the head of the department who is an authority in inflammatory diseases to the point that this staff is often requested to give advise to Congress on certain medical issues for policy making. So, I can really say I'm in the best of hands in Boston. (I gave up on my local rheumatologist when he refused to listen to me and said I had RA and wanted to put me on Methotrexate for the rest of my life. My gut said that I had PMR and it turns out I was right.) But... I guess that's also how they learn, by experimenting on us. :) You are so right, this forum has been a life saver for me. I wouldn't have made it through without you guys. Thank you! G

  • Yes, PMR is considered very rare in the US and its also considered in the words of my all of my doctors "an old people's disease". They really need to update their information because I don't consider early 50's old.

  • Funny how a lot of PMR studies are done in Minnesota then!

  • That's interesting!

  • I am in CT and can get 1mg tablets at my Walmart pharmacy, if that helps. My rheumatologist sees many PMR patients and I found out that someone who I used to work with had it! So not as rare as they would have us believe. I think we are just not as organized - no support groups that I've heard of. Maybe because folks here are so wonderful we don't need them 🙂 It also seems that there are stricter controls on getting our hands on prednisone and deciding how much to take. I try to stockpile a bit so I can taper the way I want. Hope you feel better soon.

  • TooSore, I too can get 1 mg tablets here in Massachusetts, yes at Walmart but thank you for that info. I don't know of anyone else who has PMR in my area and you're right there are no support groups either. Who needs them anyway when we have this wonderful forum. I have to admit I haven't bumped into the stricter controls yet. Good luck with your PMR journey.

  • There are only support groups and forums here in the UK because 5 ladies met on the oldest forum 10 years ago and got together to set up the charities and another two forums. If there are people living in your area - you can start the process too. It doesn't have to be official - meeting for coffee or lunch somewhere can be the start. Then it has a habit of growing - like Topsy!

  • I don't think it is any more rare in the USA than anywhere else. But I do get the impression there are a lot of doctors who think it is beneath them to diagnose and USA PCPs also often fob patients off, especially younger patients, with "fibromyalgia", "depression", "somatism" and so on. So do UK GPs too - and it is getting their notice that is important.

  • It isn't BRS that said the 10% - it was a group of doctors publishing in the USA years ago. Don't ask me for the reference - I'm fairly sure it was a textbook... But 10% for TAPERING is a commonly held rule.

  • Ah, thanks for the correction :-)

  • No - it is your body telling you that 7.5mg is the dose you are looking for: the lowest dose that manages your symptoms as well as the starting dose.

    DSNS can get you there - but it won't get you past that hurdle. It doesn't magic away the activity of the underlying autoimmune disorder which is creating the inflammation the pred is controlling.

    If you haven't already read this

    medpagetoday.com/rheumatolo...

    which Dianelee posted earlier, do so.

    And show it to any doctor who tells you PMR is over in 2 years. This retrospective study shows only 37% of patients with PMR are off pred in 2 years from onset. Half of them still require pred at 5 years - which agrees well with the Italian study I have quoted in the past where one third of patients require treatment for more than 6 years.

    And forget about adrenal function here - the symptoms are different. If you have returning PMR stiffness and pain it is probably active PMR. If you are suffering increasing fatigue as you reduce, it is more likely lazy adrenal function.

    It doesn't mean you won't get lower - just not yet. Rest where you are for 2 or 3 months and have a little try again - but don't push it. If it isn't going to work, it isn't going to work. There is a definition of madness: repeating the same action and expecting a different result!

  • PMRpro, thank you for the link and I will keep in mind your description of the symptoms. I had pain and fatigue. I will stick to 7.5 mg a lot longer and I know not to push it but it's so easy to forget when you feel well. Again, I couldn't do this without your advice.

  • Hi kulina,

    Can only agree with all the above. I was fine for two months on 7.5/7mg alternate days except for DF then back to major pain and stiffness, two weeks at 7.5 which made very little difference contacted rheumy, up the pred to 10mg and if it doesn't settle then up to 15mg. Have a lot less pain now so hopefully will not have to increase to 15mg. One step forward two steps back! Will go much more slowly in future. DSNS would appear to be the best way forward for me.

    Best wishes with your reduction.

  • Yes, I totally agree with one step forward two steps back! Even though I've gone through pain, stiffness, fatigue and just overall miserable feeling I feel like I've been actually doing "two steps forward one step back". I have been improving but it's easy to forget PMR is still in the background. I hope you don't have to go up to 15 mg, so good luck with your tapering as well.

  • I totally agree, Garine!

    After a prolonged period of suffering from PMR, and also dealing with the often 'differently miserable' and debilitating side-effects of the powerful drugs that manage the worst of the PMR symptoms, it's very easy to feel that we're 'out of the woods' when we feel some respite from either or all of the above.

    As you say, PMR symptoms are still (and perhaps always will be..?) lurking in the background for various reasons - and so this is maybe a reminder to all of us to keep a steady head and pace ourselves physically and mentally - even, or especially when feeling better? As you say: 'two steps forward and one back' - or any variation in terms of either the numbers or steps with PMR!

    My verdict?

    PMR and the process of steroid tapering is, and probably will always feel like a game of Snakes and Ladders either way, until or unless we recover from it.

    But, on the positive side, things could be MUCH worse. Just look at some of the distressing and harrowing events going-on in the wider world out there. When feeling a bit fed-up with my PMR, I often ask myself: 'would I swap places with others in far-worse circumstances?' My answer - no, thanks...

    MB :-)

  • I count my blessings every day!!!!! Yes, things could be much worse. I used to write obituaries for a local newspaper and we would see a lot of cancer deaths of people in their mid 50's. Just last year as I was struggling with PMR our good friend, also in his early 50's, came down with Transverse Myelitis, inflammation of the spinal cord. He spent 77 day in the hospital and rehab but he's in a wheelchair now and will never walk again. With that diagnosis comes a lot of other issues we take for granted, including pain, not to mention the amount of pills he has to take every day. It's horrible considering he was an outdoors kind of guy. I feel like I have it really easy with all the pain and stiffness. In a sense we are lucky. I agree markbenjamin57, I would not trade places with others in far worse situations. Thank you for all your wonderful advice and I really enjoy your funny posts. :)

  • Hi Kulina, can't add to any of the existing help already offered but just wanted to say that I have learned patience with this disease!! :-) I managed to get to 7.5mg before Christmas.....ended back up on 15mg (briefly) and it has taken until now to get to 9mg....where I am staying for a while, as I feel pretty good!! As usual there has been some great advice on here...hope you feel better soon. Linda.

  • Thank you Linda! It's disappointing when you have to increase but hey as long as you can function without pain, that's great and hopefully without any major side effects. You're right I guess it is what it is.... Good luck with your tapering also. Garine

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