PMR have I reduced to much to fast ?

H i All , I thought I was doing so well , after a 2 year slow reduction from 20mg I was down to 2mg not a big fan of cutting tablets so 2 weeks ago I went for 1mg , first few days where manageable, after about 6 days the pain was back with a vengeance in my hips back and shoulders bylaterally so I couldn't blame over doing the exercise also feeling so tired all the time . I timed it so I had my Rheumy appointment the same week , he told me to try and get through it and stay at 1mg. After 2 weeks I was in agony . 2 days ago I went back to 2mg , still in pain so taking Arcoxia 60mg purely as a pain killer (seems to work for me , but I don't like taking them ) . I don't think I could function without the Arcoxia , question is will I need to raise the prednisalone to more than my previous 2mg to get back to where I was with regards to the pain . I had almost forgotten just how painful this condition is when not controlled properly . Your thoughts fellow sufferers .

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  • Hi Gaz227,

    Dismaying as it might be I would prefer low dose Pred. With negligible side effects to heavy duty pain killers. I would be inclined to raise my Pred dose to the last dose I felt comfortable at, rest there for a while and gradually taper again. Your Rheumatologist is not living this pain. It might be worth doing a bit of detective work on your activities preceding this return of symptoms. For the first time in ages I did a basket full of ironing, my step counter showed over a 1000 steps doing this job. I was delirious with tiredness that evening and worried that I had derailed my taper. I thought this was a small gentle job - no no no. Painkillers don't help the inflammation, I think strong ones just make you care less about the pain ( slippery slope perhaps)?

  • Thanks for the reply Jane I do over do it exercise wise but 50% drop was probably to much to ask at this stage ,

  • Top rheumies advise going back to the the dose the flare happened at plus 5mg - for you I would try 5mg first. When this happens I suppose it is convenient for rheumies to assume it is steroid withdrawal - but that just delays managing a flare. Then you have to clear out the existing inflammation again before you can identify the dose you are looking for - the lowest dose that manages it as well as the starting dose. Leave it long and you may have to go even higher.

    There are a lot of people who have found that while their doctors insist 1 or 2 mg is such a low dose it can't do anything - yes it does! There are doctors and, above all, nurses who DO realise even a very low dose does a lot.

    Like SJ - I agree that the side effects of even 5mg pred are far preferable to the potential risks of Arcoxia.

  • Thanks PMRpro, looks like I will take your advise and step up to 5 mg again , it's so frustrating when you get so low then feel like you are back where you started

  • I am still a bit confused about how/why the Dead Slow method works.

    If I understand properly what I've learned here, we are in a balancing act as we taper. As you have said we are trying to find the lowest dose that will control our inflammation enough to control our symptoms. If we go too low, our PMR get stimulated into an higher inflammatory state.

    I keep thinking that it is the stage of our PMR that will determine the lowest dose we can tolerate without triggering an inflammatory overreaction. The stage of our PMR is some unknown combination of our level of inflammatory disregulation,our stress levels from activity and other concurrent health conditions plus who know what. For some reason our bodies have gotten into the habit of overreacting with very strong and prolonged inflammatory reactions to stressors that might have been handled with more moderate reactions that subsided more quickly prior to getting stuck in the PMR mode.

    How does the dead slow method help to prepare our PMR to tolerate a lower dose of Pred? Does the lower dose act as a stress that increases the level of inflammation but because the inflammatory disregulatiion doesn't get triggered when when the challenge/stress of the lower dose is not too large or not sustained we avoid the cascading into a full flair? Are we training the system to tolerate little increases in inflammations from the lower Pred, essentially increasing our stress tolerance through habituation/desensitization?

    Just wondering. I really appreciated the distinction you made between tapering to find the lowest dose that will control sypmtoms (while we wait for the PMR) to burn itself out , or not) vs lowering the Pred to get off of it.

  • It doesn't "prepare our PMR to tolerate a lower dose of Pred". The underlying cause of the symptoms we call PMR remains active, the pred has no effect on it at all. And everyone needs a different dose of pred - the autoimmune activity varies, the amount of pred you absorb varies from person to person, how you metabolise the pred varies.

    It is a way of reducing the dose of pred so your body notices the removal of the dose it has become used to less and so you are less likely to have steroid withdrawal problems which are very common. It also identifies the dose your body needs very accurately - if you reduce in big steps you will find perhaps that 10mg is too much, 7.5mg too little. You might need 9.5 or you might need 8 - and it is a way of finding that without causing a flare. If you needed 9.5mg and dropped suddenly to 7.5 you run a fair risk of having a either flare or steroid withdrawal problems - which are so similar you don't know which is which. If it is steroid withdrawal the received wisdom is that it takes a week or so to improve - but if it is really because the dose is too low you can have developed a fairish flare in that time. And you might find the last dose you were at is no longer enough to get it under control.

    That has been a common problem in the past - big step downs resulted in pain and discomfort, the knee jerk reaction was to assume it was a flare and go back to a much higher dose. If you get into a yoyo pattern with doses for some reason it seems to become increasingly difficult to get things under control again. So the obvious approach is to avoid the swings.

    The original idea of the Dead Slow approach was thought up by a Swedish gentleman who couldn't get below about 3mg without problems. so he used the idea to slow the amount he reduced right down - and managed to get off pred altogether. Some time later there were people on the forums who had had flares and couldn't reduce the next time as they were told to even at doses over 20mg, 5mg at a time wasn't uncommon, 2.5mg if they were lucky, and it was too much. So we suggested 1mg at a time. That worked - but many people at lower doses, below 10mg for example, found 1mg at a time too much. That was when it occurred to me you could fool the body by offering it the new dose just once and go back to the old dose and repeat that with reducing intervals. It worked for more and more people and its use spread.

    It is simply a way of making the whole process more comfortable - patients have managed to get to lower doses than ever before using it and rarely have flares. Flares are almost always due to reducing too far or too fast, experts have said that for years. Some doctors already appreciated the difference - but far too many think you can reduce in PMR and get off pred the same way as you do when using pred for other things - you very often can't.

  • It has taken me days to figure out that I'm not sure I understand the mechanism of slow taper yet and to try to explain what it is I'm hung up about.

    Thank you for your detailed explanation. I think, for me, the crux of the matter is in this part of your reply:

    "It is a way of reducing the dose of pred so your body notices the removal of the dose it has become used to less and so you are less likely to trigger steroid withdrawal problems which are very common. It also identifies the dose your body needs very accurately"

    My paraphrase: There are the two benefits of the Dead Slow method 1) the body is less likely to develop steroid withdrawal symptoms which are common and troublesome (and often confused with a flair leading patients and their doctors to go back up on Pred and prolonging the whole tapering process beyond what it might have been) 2) It is the most accurate way of identifying the dose needed to control the inflammatory component (the symptoms) of PMR.

    ( I was taking a beta blocker high blood pressure medication, 1/2 of the usual lowest dose, for the longest time. My new MD told me to switch to a different medication. I spent four days with heart pounding and high HR until I went back on the beta blocker, but in liquid form that I could slowly tapered over a month. Doing it slowly I had no symptoms. I thought at the time that the reason that the slow taper worked is that it didn't trigger a rebound of the HR which had been suppressed by the medication for a long time. My pre-meds HR was never as high as it was during those four days. I'm trying to see an analogy to Pred. taper but there might not be any.)

    So now for another question if you aren't exhausted by me by this time: What is going on in the body when we develop steroid withdrawal problems at relatively high levels or Pred say from 17 to 15? Is it different from reductions around 8 -7mg, our physiological adrenal base?

    I understand that we feel more pain when when our taper triggers a steroid withdrawal reaction. How different are the symptoms from the re-emergence of pre steroid pain issues that were there before and independent of PMR? Does the increase in pain itself in someone with underlying PMR trigger aninflammatory reaction that gets the PMR going?

    If this all too much of a theoretical pain in the neck for you I certainly understand. I have for years been interested in sensitization, desensitization/habituation, upregulation and downregulation. (I am a psychologist and I treat a lot of PTSD).

    Years ago I had a systemic reaction to Xerox toner which I didn't realize was toxic. I got it on my hands, brushed it off, and went about doing my usual work until a few hours later when I got to thoroughly wash my hands. The following morning, I had large hives everywhere the blood had pooled overnight. I also had bright red swellings on my hands which eventually peeled as if they had been burned. Everything healed within a month, but for the next two years any insect bite, any scratch, any excitement that brought excitement to my cheeks cause a big overreaction. I told a colleague that I had developed PTSD of the skin. Clearly I had been sensitized. This experience with PMR is reminding me of that time. I just don't know enough to explain how/why.

    My mother who died at 100, pretty healthy all her life, always said that everything takes two years. Toward the end she kept saying she no longer had the two years for things to get better. LOL. I hope in this case, for me and my PMR she continues to be right.

    Thanks again for all your help. You have no idea how much it is appreciated.

  • "Is it different from reductions around 8 -7mg, our physiological adrenal base?" - basically, yes.

    I don't know whether this helps

    mentalhealthdaily.com/2014/...

    but at the doses above about 10mg your body is reacting to the change in the drug dose - and it is something that happens with many drugs. Below 10mg it is the body's requirement for its natural corticosteroid that is the problem. Cortisol is essential for the correct functioning of many physiological processes - above about 10mg the artificial steroid fulfils most of the need although severe stress can mean even higher doses aren't able to help you cope.

    Withdrawal pain is often called steroid withdrawal rheumatism so typically for us mimic the PMR symptoms. Whether the pain triggers more PMR problems I don't know - it may do in some people, some people find any form of trauma will affect the immune system and upset how it is functioning so cause a flare of PMR symptoms.

    I hope your mother was right - but don't get too fixated on 2 years! About a quarter of patients are off pred in 2 years or less, the rest of us get longer to practise!

  • Hi Gaz,

    How disheartening for you, but really only option is as others have said, back up to 5mg. Hopeful that should be enough to sort things out for you, then try a slower taper taking a few weeks rather than an overnight drop -if that's what you've been doing. That way seems to fool the body into not realising you are cutting the dose - your last one was a whopping 50% - no wonder it reacted.

    Hopefully this is just a blip, and you can get back down again, but I always found the low doses more difficult to manoeuvre than the higher ones. So, slowly, slowly!

    Take care

  • Thanks for that , I have gone back to 5 mg for a couple of weeks and see how that helps pain has reduced considerably already after 2 days , I have a gum biophsy in just over a week due to a white patch my dentist spotted , I did write a post on it some time back , no doubt that will increase my stress levels which don't help our condition especially waiting for the results . Thanks again Dorset Lady , PMR pro and all that contribute on the forum it's a life line for so many sufferers . ๐Ÿ‘๐Ÿ˜€

  • Hi Gaz I am sorry you are in such pain now. Taking an NSAID such as Arcoxia with pred is not recommended, although it probably will not be too much of a problem at such a low dose of pred. If the Arcoxia is working well you may find the pain is not all actually due to PMR. As the others say I would up the pred say up to 5mg and see if that helps.

  • Thanks for the reply piglette , I do have a certain level of osteoarthritis in hood and back but the pain is so bylateral around my body it must be a flare through the reduction , I will take on board what everyone has said and go a little slower next time when I get down even try cutting the 1 mg tablets to reduce the percentage . Thanks for your help . I get more info from this forum than my Rheumy and GP put together ๐Ÿ‘

  • The Dead Slow approach helps there too - you are challenging your body with the new dose just one day at a time, going back to the old dose for several days in between. It takes me at least 3 such single days before my body doesn't object and once that has happened it usually goes smoothly to at least alternate days old and new.

  • Thanks PMRpro , I will take that on board .

  • Gaz, I've been using the dead slow method, now nearly to 1.5. I know I couldn't have got here had I dropped 1 mg cold turkey. In fact I'd have been stopped in my tracks at higher doses, I'm sure. Having found it very hard to get past the middle of the taper the last few times (from 3 to 2.5, from 2.5 to 2) I tended to stop and try again after a week or two. This time I decided to tough it out. And once again at the middle of the taper, the place where you take the new dose more often than the old one, I was tempted to abort a taper. However, I thought, this is probably steroid withdrawal. In a couple of days I'm scheduled to take 2 mg again, I'll wait it out until then. And, lo and behold, I was fine. I am now, having taken 2 mg yesterday, into the six days at 1.5 and feeling as good as I think I can reasonably expect - which is pretty good, actually. This long account is by way of encouraging you to try the dead slow approach once you're back on track again. As PMRpro says, and I say too, it isn't slow if it works!

  • I was using the dead slow method umtil doctor said it would take too long and like a fool I bowed to his "superior education! " How wrong. I am now back on the dead slow method. I put ear plugs in when I see doctor now! ๐Ÿ˜Ÿ๐Ÿ˜ก๐Ÿ˜–

  • Sorry you had that bad experience. You'd think they'd learn, wouldn't you?

    I'm going to see my doctor next week and I must remember to tell her how much I appreciate that she let me reduce at my own pace.

  • So it will take "too long"? How does he know? Has he a crystal ball that gives him a date for your a/i disorder going into remission?

  • Thanks for the advise Heron , taken on board

  • I always increase slowly as well by going up by 1mg and seeing how it feels for a few days. If OK then hold that dose for a month before commencing reduction very very painstakingly slowly, listening to what the body is telling me all the time.

  • Have given this conundrum much thought- yes, miracles do happen! Anyway I reckon that in the event of me ever getting to 2 mg a day I would go the extremely, boringly, hated by my doctor way of reducing:

    1, 2,2,2,2,2: 1,2,2,2,2: 1,2,2,2: 1,2,2: 1,2: 1,2: 1,2: 1,2: 1,2: All the time assessing pain or no pain. If pain add another 2 and wait for next decrease until pain substantially reduced or gone.

    Then:

    1,2: 1,1,2: 1,1,1,2: 1,1,1,1,2 , 1,1,1,1,1,2:

    Then try all 1's. if ok, no or little pain them you've hit the jackpot!

    Long drawn out, boring, but it does work.

    The key word? Patience.

    ๐ŸŒบโค๏ธ๐ŸŒท

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