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reduction steriods feel ill

Posted , 12 users are following.

julia85224
julia85224

Hi all,

I am still very new to pmr, and could do with some advise.

This week is my second attempt to reduce steroids from 15mg to 12.5, four days I , I feel like I have been hit by a truck, tearful and shaking.

Will this pass? and will it take long.

Still in denial, so hate this.

Would appreciate any thoughts.

Julia

0 likes, 52 replies

52 Replies

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  • EileenH
    EileenH julia85224

    Posted

    Are you trying to go from every day old dose to every day new dose straight away? If so, some people are very sensitive to changes in dose and a slower approach is far easier to cope with.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    If you follow this link you will find a thread with a load of links in the first post - all reliable information and contacts - and in the replies part you will find a slow reduction plan together with an explanation of the whys and wherefores. It has been used successfully by many people on the 3 forums in the UK (who live all over the world) and has been seen and approved by various rheumies - and is currently in use in a clinical study in the north of England. It may appear slow - it isn't slow if it works!

    You haven't told us how long it is since you were put on pred that I can see (I haven't time to read the entire 70+ replies in your thread just now, I have read them as they were posted), just that it is after 18 months of symptoms. However, the impression I get is that it isn't long - and you are already failing with a second attempt to reduce from 15mg to 12.5mg. You MUST be patient - yes, I know you hate the whole set-up, PMR is bad, pred is worse to most people, but you have a very basic choice: take pred, learn to accept it and work with it to get the best out of it, or go back to the pain and disability I'm sure you had for the last 18 months.

    Top experts (in the "Bristol paper" in that link I gave you) keep their new PMR patients on 15mg for at least 6 weeks. Only then do they start to reduce. Yes, they say straight to 12.5mg, and it works fine for some people. However, other top experts have recommended in the past that in PMR no reduction should be more than 10% of the current dose - here, that would be not more than 1.5mg for this first time. By 10mg/day you are down to 1mg - so why not start with 1mg steps? If you feel you MUST do the 2.5mg, then use the dead slow and stop approach - it does work doing that for some people.

    A lot depends on how active the underlying autoimmune disorder that causes the symptoms we call PMR is - if it is active you will find it more difficult to reduce far to start with. You have had this for a long time - there is probably a lot of stored up inflammation to clear out. Have you had your ESR (sed rate) and CRP (C-reactive protein) levels checked? Were they high to start with? If so, have they been checked now before this attempt to reduce? Were they already pretty much as low as they are likely to go? If they weren't low then you are setting yourself up for a fall at the first hurdle.

    Almost everyone I know hates pred - I don't, it has given me my life back and I've been taking for 7 years - but most people come to an agreement with using it: it works to give a reasonable quality of life until the cause of the PMR burns out/goes into remission, whatever you want to call it. Which it does for the majority of people sooner or later, usually 2 to 6 years or so for 75% of patients. Then you will need no pred. Unless it returns - which it can. In the case of PMR there is no choice of medication, only pred reliably manages the symptoms. Some people find methotrexate helps to achieve a slightly lower dose - many don't - but it may be it isn't "just" PMR they have, late onset RA can appear identical but it usually responds to methotrexate. 

    The more you tell us, the more we can help with advice and suggestions - and there are plenty of people here who will offer their experiences in an attempt to help you.

    • julia85224
      julia85224 EileenH

      Posted

      Thank you so much,

      I was in such a hurry to reply I didn't read all the points you raised.

      I have now.

      I was diagnosed in May after 18 mths of severe pain and stiffness that caused my to leave a fulltime job.

      My bloods have never been raised and I think that is what took the time to diagnose.

      Started on 15 felt better than I had for months, apart from a headache, Dr increased dose to 30 and I felt dreadful.

      Did two weeks on 15, reduced to 12.5 second week rang Dr and he increased it for one week only.

      That was last week, started reduction Saturday and now feel like I am going mad.

      Don't mean to sound dramatic, normally I can fix anything, Julia

    • EileenH
      EileenH julia85224

      Posted

      "normally I can fix anything"

      That's what I've just explained - you now have a NEW normal. When you accept that you will have far more energy to devote to managing your illness. As Anhaga has said - she was much the same a year ago. 

      However - if you have no raised blood markers then you have to become far more sensitive to your own body - as I have. It took 5 years for a diagnosis - effectively made by me in the end! if you have been forced to give up your job - and I do realise that is a massive loss for anyone - then you can spend some time now on you. That will help a lot.

      It will have been the headache that triggered the 30mg response - in case it was occult GCA, which can result in overnight loss of vision. It does suggest though that your body is very intolerant of dose changes - and the slow slow way should help that a lot if you can get the doctor onside enough to provide enough pred as it will take a bit more overall. 

    • maid_mariane
      maid_mariane julia85224

      Posted

      Hi Julia

      I started prednisone sept 2015 on 20mg. My first drop was after 2mos nov 2015 over 8 weeks to 17.5mg and did i feel it. I stabalized for 2 mos. My next drop was March 2016 over 6 weeks only by 0.5 mg to 17 and i felt it again. I again stabized for 1.5 months wnd ow dropping again over an 8 week tapper by 0.5mg.

      I give you time frames so you can see it is a longer process mine beeing slower in dosage than most but know what affects you and if bad don't do it. This forum is awsome and it teaches you patience. Slow and steady.

      Mariane

  • marian56227
    marian56227 julia85224

    Posted

    I had a similar reaction and my Dr advised going back and doing 1mg or even half at a time for 2 wks at a time or even a month. THis worked for me. I'm down to 8mg now and getting there albeit very slowly. Hope you'll soon be feeling better. Chin up. Feel for you X
    • julia85224
      julia85224 marian56227

      Posted

      Hi,

      Thank you for you're reply,

      if I still feel like this by Friday I will speak to my Dr 're increasing dose.

      Hope you are well.

      Julia

  • Marla0415
    Marla0415 julia85224

    Posted

    Hello Julia,  I dare say your words resonate with most of us who are on this forum. They certainly do with me. I was actually diagnosed in July of 2015 started on 15 mg of Prednisone which took away all my symptoms and gave me my life back. I had no idea at the time that a year later I would still be struggling with it😕 Only because of this forum do I now I know this could go on for years. My Dr had me reduce to 12.5 mg 3 times early on and each time the symptoms came back with a vengeance. Ultimately I ended up on 20 mg to get it under control again. I'm currently working at reducing my dosage using the slow method detailed on this forum. How's that going for me?  I don't feel as well overall but it isn't debilitating so I am continuing on and will see what lies ahead. I hear and relate well to the frustration in your words. The people who write here on the forum helped me accept the fact that this isn't something that will go away soon and to stop fighting against having to take the Prednisone. I guess it's called "acceptance" of what is ! I have many of the side effects from it but I know I couldn't function at all without it. Hopefully you have a Dr that will work with you on your Prednisone reduction and not insist you do it their way. Keep reading and asking your questions here. It certainly helps being armed with information when you first start the PMR journey that you don't find elsewhere. Wishing you better days ahead. 
    • julia85224
      julia85224 Marla0415

      Posted

      Hi,

      Thank you for you're kind words.

      Without this forum I think I would have gone mad.

      It's the acceptance bit, not coping with, definitely kicking and screaming.

      I am sure I will feel better soon.

      Hope you are well.

      Julia

  • marthatidbit
    marthatidbit julia85224

    Posted

    I think that accepting the need to slow down, actually doing it, and finding a new normal is absolutely the hardest part of living with PMR.  (I guess living with unmedicated pain was probably the hardest part, but that's not an option!) 

    It's especially hard for those of us still working, as it means my non-working time is what is most affected.  My family and social life.  I also think that accepting the new normal is somewhat ongoing.  I do OK for awhile, and then start to feel like a lazy dropout again.  Then I overdo it one day, and am reminded why I have a new normal. 

    I shared The Spoon Theory with my family, and that has been very helpful in helping them understand, and helping me remind them why I can't go somewhere or do something.  Not enough spoons left.... 

    ​My rheumatologist didn't think my GP's diagnosis of PMR was correct, due to my age (56),  so she put me on a quick reduction plan - From 40 mg (6wks) down to 20 mg x 2 wks, 15 mg x 2 wks, then 10 mg x 4 wks....  I decided to follow it, jsut to find out which Dr was right.  I slept better at 20 mg, had some mild ache return on 15.  By the end of the 3rd wk on 10mg, I was back to the original pain.  So now my rheumatologist is a believer, and I'm back up to 15 mg for a couple of weeks and will then start a much slower taper.  Thanks for all the great advice here!

    ​This little experiment also helped me to accept again that this is long process, and the slower pace is essential.

    • julia85224
      julia85224 marthatidbit

      Posted

      Hi,

      Many thanks for you're wise words,

      Feeling a little bit more human today.

      I don't think I am doing myself any good being in denial, and although I am trying hard to accept a slower pace, days like yesterday when you feel so I'll, making a drink is an effort, causes me utter despair.

      On 12.5 mg for another week, then reduce to 10, just hope the next reduction isn't as horrible as this one has been.

      Take care

    • Silver49
      Silver49 julia85224

      Posted

      Glad you are feeling a bit better. The only flare I had was moving from 12.5 to 10. I went back up to 12.5 for a week or so and then to 11 and it worked for me. I am now a year down the line from diagnosis with no other flares and feeling more like normal whatever that is! I am at 8.5 on the DSNS method and so far so good. 
    • EileenH
      EileenH marthatidbit

      Posted

      Do tell me - what was wrong with having PMR at 56? The guidelines have always said over 55 and have been amended to over 50. The support groups would like to see more emphasis on the fact that it does appear in under 50s too - but there are two camps there: believers and unbelievers! None of them have had PMR though...
    • Anhaga
      Anhaga julia85224

      Posted

      Any chance you can slow down that taper from 12.5 to 10 a bit?  Some people suggest reducing by 1 mg at a time.  You end up with the same result, maybe taking an extra week, but it's less of a shock to the body.  Also if you are going to have a bad reaction it's easier to catch a flare if the reduction is smaller.  
    • julia85224
      julia85224 EileenH

      Posted

      Hi Eileen,

      I have looked at that,

      I suppose being so new to this, the Drs reduction method had to be followed to the letter.

      I am focused on 12.5 for another week, then I can stay on 10 for six weeks.

      But after the past few days, that goal seems a way off.

      Getting out of bed to sit down and then go back to bed, isn't even a slow recovery.

      Such a waste of a day.

      Would you advise me to contact consultant and put dose up.

      Thanks as always.

    • Silver49
      Silver49 julia85224

      Posted

      My stumbling block and only flare to date was reducing from 12.5 to 10. It was too much and I had to go back up to 12.5 and then went down to 11. The DSNS method is working for me and I am at 8.5 after a year and feeling pretty good. We are all different so what worked for me may not be the right way for you but it is a big jump to 10 from 12.5.
    • marthatidbit
      marthatidbit EileenH

      Posted

      She even agreed that my symptoms were spot on for PMR, and couldn't come up with any other cause.  But because of my age, it wasn't PMR.  I'm a little grouchy that I had to return to pain for her to come around, but at least we're there now.  Maybe it will help someone else down the line!

      I'm very grateful for this group, and all the experience which gets shared.  It has been such a great resource!  

    • EileenH
      EileenH julia85224

      Posted

      We can't advise what dose you should take - but what I will say is you have to GET to 10mg first. If you are struggling this much now, the journey to 10mg will be a very rocky one. I would definitely discuss it with your consultant if you can.
    • julia85224
      julia85224 EileenH

      Posted

      Hi,

      Thank you,

      I will be speaking to him later, and hope the reduction road is easier than this week has been.

      Ever the optimist.

      Hope you are well.

    • julia85224
      julia85224 EileenH

      Posted

      Hi Eileen,

      Forgive the intrusion into you're evening.

      Regarding steroid reduction,

      I have spoken to my Consultant who said I shouldn't have had the symptoms I have experienced all week, by reducing from 15- 12-5 ?

      He said continue for another week with 12.5 then down to 10.

      If I have a bad reaction at 10 it isn't PMR

      Totally confused.

      Any insight on this would be much appreciated.

      Hope you are well

    • Anhaga
      Anhaga julia85224

      Posted

      Where did your consultant get his "knowledge" of a) PMR and b) steroid withdrawal?
    • julia85224
      julia85224 Anhaga

      Posted

      Hi,

      Thank you for you're response,

      Goodness knows, totally confused.

      I explained that my symptoms were the same as the last time I reduced from 15-12.5, he said that isn't typical of pmr, what????

      So I dont know if the feeling horrid fir four days was reduction withdrawal or pmr symptoms not being controlled.

    • Anhaga
      Anhaga julia85224

      Posted

      Given the rate at which you are being told to reduce it would not surprise me if it was a bit of both.  You may well be okay at a lower maintenance dose, but only if your body is allowed to reduce slowly to that level.  Some people do seem able to decrease by 2.5 mg while still above 10 mg.  My doctor had advised me to decrease by 1 mg per week (afrer several weeks at 15).  This has turned out to be very good advice because when I started to get increased pain (at 9) I was able to head off the flare with help from this site, and with dead slow nearly stop method haven't looked back.  I'm certain that confronted with a plan like you are supposed to follow, I would still be struggling to reduce.  As we often say "It isn't slow if it works". How any clinician can say that a response of increased pain upon reduction isn't typical of PMR is beyond me.  The response is typical of too fast reduction.  

      I'm sure you'll get some more useful advice soon, but I did want you to know that you are right to question what your clinician is telling you.  Your body knows.  

    • julia85224
      julia85224 Anhaga

      Posted

      Many thanks,

      I will see how I go, and keep ringing him, to get my message across.

      Hope you are well.

    • EileenH
      EileenH julia85224

      Posted

      Sorry I've taken so long - I'm in Canada on holiday so internet access if a bit sporadic!

      As Anhaga has said - where did HE get his knowledge about PMR. If he is telling you to continue reducing I'd say he has little idea of how PMR works!

      Did the pain/feeling ill start immediately you reduced? I.e. on the first day, or did it take a few days to develop? Steroid withdrawal starts immediately you change the dose and then usually improves over a week or so, a flare usually takes at least a few days to start and then increases with time rather than improving. 

      Are you in a position to find another rheumy? Where are you?

    • julia85224
      julia85224 EileenH

      Posted

      Hi,

      So kind of you to take the to reply, especially as you are on holiday

      I reduced the dose on the Saturday, felt tired but ok Sunday, Monday chronic fatigue, arms and legs felt like I had flu, and was in and out of bed until Thursday.

      Friday, Saturday and today feel fine, even mowed the lawns.

      Took three months to see this rhemy, I am based in Staffordshire UK.

      Hope you are well.

      Julia

    • EileenH
      EileenH julia85224

      Posted

      Then it sounds as if it all resolved quite well over a week or so? That suggests it was steroid withdrawal - and trying smaller size steps would help with that. If it were a case of the dose were too low the problems would get worse over that sort of time, not better.
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