Am I going to succeed, or should I start over? w/Dead Slow

Posted , 10 users are following.

A week or so ago I went down from 20mg to 17.5 because I didn't have 1m tablets to reduce correctly.  So as the week passed I'm feeling more pain in my sides above my hips and feeling wiped out with arms so sore.  Now I've got the 1mg tablets, so I thought I'd start at 18mg high to 17mg low.  So that will give me a week of 18mg.  Do you think that will work or should I go all the way up to 20 again and down to 19.  My dr is so anxious for me to reduce that she warned me she wouldn't prescribe pred anymore if I didn't reduce it.  She doesn't know what this pain is like.  I'm hoping it is the withdrawal you speak of going down a bit that is hurting me.  I've been on a high dose for so long, I'm ashamed.  Not to mention very fat and all the other side effects.  Thanks for listening.

0 likes, 16 replies

16 Replies

  • Posted

    Why not go back to 20 for a few days to get that pain under control?  Then try the 2 mg drop.  It's 10% of 20, so it should be okay.  I can't remember, how long have you been at 20?   I know there will be others along with better advice about what to do when at a dose of 20ish.

    Withdrawal usually comes on quite quickly and then eases as the body adapts to the lower dose.  Too low a dose of .pred will result in gradually increasing pain.  The pain seems to be the same, it's the timing which helps us distinguish.  So if the initial withdrawal pain doesn't ease but seems to get worse, you are probably dealing with a need for more pred.  But you won't usually know for sure for somewhat more than a week, although like everything else this is very individual. This is why the dead slow method is useful because it helps deal with the withdrawal pain so it's easier to complete a taper to lower dose without suffering more than perhaps some transient niggles. I think some people use the dead slow method even when still at levels like 20, although it becomes more necessary for many of us by around 10 mg. 

    And don't be ashamed.  When I had a flare last year and told my doctor I felt I had failed she was very kind and reassured me that it wasn't my fault, I wasn't a failure. 

    PMR is what it is.  All we can do is look after ourselves as well as we can, be kind to ourselves and our bodies. . 

  • Posted

    DebbieHurts, I was at 8 tapering to 7 when I had my flare, had to go to 30 mg to get relief. My Rheumy and I do not agree on much, but I am still getting my prescriptions. I stay on 30 mg for 6 weeks till I was PMR pain free only then did I start to taper. Tapering using a modified DSNS at 20 mg, now full DSNS. Using an anti-inflammatory diet and turmeric I have been basically since last June. I very active, with a positive attitude and a smile on my face. ☺️
    • Posted

      How is your skiing going?  And what level are you on now Mr. Smiler!smile
    • Posted

      Diana, still level 1, this was not a good year to try for level 2, very poor snow conditions. Most of my time this year was either playing or teaching. Maybe next year. Taught at 2 different areas this year and probably will do so next year. Skiing has been my passion since I was a kid and now I enjoy teaching it also. 80 years young, thinking positive with a smile on my face! ☺️
    • Posted

      Well good for you I say!!   Keep going strong and stay fit in spite of PMR.
    • Posted

      Diana, I got down last May, was in a wheelchair. This forum and EileenH and few others got me going again. Now no looking back only forward, thinking positive with a smile on my face. ☺️
    • Posted

      Yes this forum is fabulous.  Couldn't be without it!  Good luck with drops etc. I am a tortoise, not a hare!

       

  • Posted

    The threat from your doctor is what I would worry about.  That’s like starving a child because they won’t make thei bed.  Ignorance abounds.
  • Posted

    " My dr is so anxious for me to reduce that she warned me she wouldn't prescribe pred anymore if I didn't reduce it."

    Change your doctor - because she cannot and MUST not simply cut your pred suddenly like that as it could make you seriously ill, especially if you say have been at a high dose for a long time. And threatening a patient like that is appalling. I would be making a complaint. 

    If the pain is increasing it is more likely that you have got too to low a dose for your disease activity. Withdrawal pain usually starts within a day or two and then improves. However - we have always suggested that when you are trying to reduce that you clear the decks for the week ahead and rest and take things easy for that reduction - the DSNS approach replaces that to some extent but it is still worth remembering.

    However - while I do appreciate her point about reducing, she is going about things the wrong way. If you cannot reduce the dose of pred without a return of symptoms than it is perfectly possible that her diagnosis is incorrect  A slow or incomplete response to an appropriate dose of pred or great difficulty in reducing may mean you have something else going on - it may be late onset RA or another inflammatory arthritis, they too respond to higher doses of pred but reemerge at lower doses. Or something completely different. But forcing a patient, effectively at "gunpoint", to reduce is NOT the way to go about it. She is a poor doctor - whatever her college results might suggest.

    Where are you?

  • Posted

    Hi Eileen, I am in Reno NV the USA.  I really like my doctor.  And she is trying very hard to get me to take many tests to see if something else is causing my inflamation.  But I don't like the way she is so stubborn about it NOT being PMR just because I've had it too long.  I had the vasculitis test and it was very clean.  Now I am to have a lung test because my oxygen is so low, a nerve test, and a endocrinology test.  Before I had her, I had a Dr. Prupus who was kinda famous for a rheumatologist (but he died) and he, too, worried that he had not diagnosed PMR rightly because I wasn't reducing well.  But I felt the diagnosis was right because the symptoms fit exactly.  The last thing he told me, after looking at one more hight SED rate was, "The numbers don't lie, so maybe you do have it.  The numbers don't lie."

    • Posted

      But I think your SED rate can be elevated with RA as well?  As Eileen says there is a thing called LORA, or late onset rheumatoid arthritis which a significant number of PMR patients are eventually diagnosed as having, rather than PMR.  These may in fact include the group of PMR patients who respond favourably to methotrexate, which is useful for RA, but doesn't directly help "classic" PMR.   If you google Polymyalgia differential diagnosis you will find some information about other illnesses which initially present as PMR and which make a definitive diagnosis of "just" PMR so difficult.  It's possible, although sadly we'll never know, that after a few more months of observing you and your symptoms your unfortunately deceased rheumatologist would have lighted upon a different diagnosis.  Good that your doctor is still doing investigations.  I hope you get some good answers soon. 

    • Posted

      How long have you had it? Because she is probably wrong there too. This article refers to a study done by top PMR experts at the Mayo Clinic:

      https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

      who have found in a retrospective study that the median duration of PMR is 5.9 years. Which agrees closely with one of the earlier studies done by an Italian group who reckoned that PMR lasts about 6 years in a high proportion of patients. It is NOT a 2 year illness, half of patients require pred for 5 years.

      As this report from the ACR/ARHP Annual Meeting in San Diego discusses:

      http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

      these are not figures plucked out of thin air by patients who know nothing. They are from world renowned experts in the field. Which I doubt she is.

      Your previous rheumy could be wrong too - because raised bloods can be due to a range of things, anything inflammatory. By no means just PMR or GCA. 

      Another article of interest for you to bring to her attention may be this:

      https://academic.oup.com/rheumatology/article/56/4/506/2631560

      where they point out that those of us who have PMR+ (for want of a better shorthand), in the form of large vessel vasculitis but no GCA symptoms, are likely to have longer term problems and probably more difficulty reducing their dose. It all depends on how much pred you absorb (anywhere from 50% to 90% of the dose, the 70% so many doctors believe is just the average) and the activity of the underlying disease. If it is high - you may need more.

      But the bottom line at present is not how long PMR lasts or whether you do or don't have it, you have been on pred for a long time. It would be medical negligence to refuse to prescribe it for you. She should be aware of that.

       

  • Posted

    I think it has been about 8 years of pain of the PMR kind.  Before that years of Fibromyalgia.  I was down to 10mg about 2 years ago, but got pneumonia and really crashed.  Then I got down from 20 to 15 for awhile, then up the pain went again, don't know why (I had three operations, maybe that was it).  I'm so down, very hard to be positive right now, but I expect I'll bounce back a little anyway.  Thanks everyone.

  • Posted

    Personally I would follow your Drs advice. The 'go-slow is certainly a good plan and I am full of admiration & follow a lot of what Eileen and co advise BUT...I am noticing a feverish attitude on the forum to reducing steroids this way...

    I have developed muscle pains possibly due to initial high dose 2 yrs ago, which is very like pmr , it is easy to confuse the two. More important to get off the steroids even if you get discomfort along the way..

    I get the feeling that a lot of people on the forum turn up the steroids too readily, the trick is to distinguish between severe pain (steroids up) and discomfort while your body gets used to a lower dose.

    I have only started to reduce by 1/2 mg since under 5mgs ! 

    The forum has been a life saver and lots of folks offer great advise but I don't think it helpful to sew the seed of doubt into a patients mind and undermine the medics. I would try and get on with your consultant and give their advice a 'go', if  really doesnt work for you try and get referred elsewhere.

     

    • Posted

      "I get the feeling that a lot of people on the forum turn up the steroids too readily"

      I don't agree at all - I rarely suggest to people to "turn up the steroids" - I do frequently suggest reducing at a steadier pace when the doctors are suggesting a silly reduction which doesn't agree with the itnernational guidelines. And while YOU may have managed larger drops, others can't. I would never suggest slower than 1mg at a time unless the person said they had problems. 

      But in this case a doctor is threatening to take away steroids from a patient who is likely to be physiologically dependent on them That is not the same thing at all. Stopping pred precipitately could induce a life-threatening condition if the patient's adrenal function is compromised. 

    • Posted

      Hello Eileen, I have the greatest respect for your advice and the time you put in...my point is though, that people seem to be too quick and are often advised to go back up at the slightest hint of a 'flare' and that this is not always so wise. 

      I do wonder how many of us have prolonged the steroid therapy this way.... I think I am one of them!. Could well be proved wrong but I do think we need a more balanced approach sometimes.

      I'm sure no Dr would just stop prescribing steroids anyway...Jaw Jaw is better than war war !

      Happy Easter all

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