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Reaching lowest dose of Prednisone

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gloster
gloster

I was diagnosed last November with PMR and started on 20Mg of Prednisone. It relieved the pain

immediately, and I have slowly been reducing the dose. I was on 8.5 mg on 3/30/14 and started using Eileen H's slow reduction method. I was in the midst of the reduction schedule and took 7.5 on 4/23. The next morning I was in agony. I took an 8.5 dose that day and wasn't completely better when I went to bed. However, this morning I woke with only mild stiffness that disappeared with an 8.5 dose. My question is how common is it to have a flare-up or does it indicate that 7.5 is too low for me. I really was hoping to get off of the prednisone. Any comments would be appreciated.

7 likes, 138 replies

138 Replies

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  • iellen32
    iellen32 gloster

    Posted

    After 3 years on Pred I realize 8 mg is a tricky stage of the tapering because as we get that point we must feel how our organism reacts if we jump to one mg lower than that at a time.

    My experience tells me I have to stay for some months on the same amount and then carefully do the tapering again,

    • jennissw
      jennissw iellen32

      Posted

      For sucess I have had to reduce by only 1/4mg a month since 81/2mg. I do 1/4 every other day for two weeks and then another 1/4 every day for the next two. Even this causes me lots of withdrawal pain but I do actually get there. Now on 7.5 and I will stay with that now for a while.
    • iellen32
      iellen32 jennissw

      Posted

      It may look - for someone not familiar with the tapering of the Pref and its effects on the symptoms a too slow pace, but it is not!!!

      I have been suffering the unfortunate consequences of a quick adjustment of the steroid.

      Are you doing this smart tapering by yourself, or you have a wise doc who does so?

      I would be quite astonish if there a doc who does 1/4 of a tablet to go down the dose,

      Great! This way you will avoid flare ups and the return of the symptoms!!

      I am glad for you and your well being!

      During three years I am on a yoyo tapering of the steroid - going too fast then back again to a lower dose.

      Now I decided to do the tapering by myself and I am feeling much better of my Temporal Arteritis!

      It was great to know the way you are controlling the tapering of your steroid!

      Best wishes for a wonderful New Year!! xxxx

    • EileenH
      EileenH iellen32

      Posted

      If you follow this link to another post on this forum you will find a load of links to other sources of reliable info in the first post and in the replies you will find a very slow reduction scheme which has been recommended on the 3 UK PMR/GCA forums for the last 3 or 4 years. It is currently part of a clinical study in PMR and several rheumatologists have been shown it by patients and have approved it as a good idea.

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

      Because of the way it is done there is no need to try to cut tablets and your body gets used to the idea of the next dose down just one day at a time. I find that for the first 3 times I take the new dose I feel "strange" but since I am taking the old dose for the next few days that goes immediately rather than feeling unwell for a couple of weeks which is quite common - some people are very sensitive to the change in dose.

      We used to suggest it just for reduction at the lower doses, below 5mg, but then realised it would help at higher doses too. Many people have used it to get to far lower maintenance doses than they have managed previously before their symptoms start to flare. It avoids steroid withdrawal problems and identifies your longer term dose far more accurately than usual reduction. 

    • iellen32
      iellen32 EileenH

      Posted

      Great, great! I will try for sure!!

      Many thanks!.xxx

  • iellen32
    iellen32 gloster

    Posted

    Follow your system it gives us exactly how ok or not we are tapering the steroid.

    I am always open to a new schedule to give a try!

    Our life evolves around our symptoms!! If we want someday to get to the desired point of a lower dose we must be very calm on the tapering , thecsliwestcthe better.

    One day we will get there!

    Take care..

  • clive73109
    clive73109 gloster

    Posted

    I started on 50mg per day  Pred two years ago for PMR.

    Gradually reduced to one quarter of a mg per day with regular flare ups

    Anybody else been on such low dosage?.

    Really scared to stop taking Pred as i still get minor flar ups if i am not on time with Pred. Itchy skin and rash otherwise feel fine.

    Question. Does reducing Pred from say 40 to 20 Mg per day have the same effect as reducing Pred from 4 to 2mg per day.?. In other words does halving the daily dosage at any level  have the same effect on the body?.

    I am thinking of eating massive doses of fresh tumeric and then going off Pred completely.

    Has anybody on this site been down to one quarter of a mg per day?

    At  what dosage do people stop taking Pred.?

     

    • Anhaga
      Anhaga clive73109

      Posted

      Well, Clive, I've recently read that turmeric is not particularly bioavailable.  Whether an extract would be more effective, I don't know.  Generally speaking, however, I think anything natural that works as an anti-inflammatory should be helpful.  Ginger is one thing.  Avoiding sugar and highly processed carbs is also supposed to be helpful.  I've been getting low level light therapy which also seems to have been helping me, but I'm still at a much higher dose of pred than you are.The usual protocol is to reduce pred dose by 10%.  I suppose you could try alternating days taking your dose one day and nothing the other.  But you say you are still getting regular flares, so you are probably right to think you still need some pred.  
    • EileenH
      EileenH clive73109

      Posted

      Quite a few people have got to that and stopped successfully - got to that because they got to 1mg, then 1/2mg and then started taking the 1/2mg on alternate days before stopping. You have to get to zero somehow after all and cutting a 1mg tablet into 4 is pretty fiddly! And the reduction is also important to get the body used to no pred.

      Others have got to 1mg, stopped, and then had a flare just a few weeks later - but you can't know that without trying stopping. For some people even 1mg every few days seems to be enough to stop the daily inflammation building up - it is doing something but who knows what?

      "does halving the daily dosage at any level  have the same effect on the body" - well no - because if you have PMR and have been taking 40mg, dropping to 20mg is still well above the level that manages PMR. You might have a problem with a steroid withdrawal rebound of symptoms - but that is different and depends on the person. It also depends on how long you have been taking pred and what for - you could take 40mg for a few days and drop to 20mg and have no problem at all and many people do in other illnesses such as asthma or pneumonia. On the other hand, 4mg may be enough to manage the inflammation in PMR but 2mg not - or you may already be in remission and not someone who has an adrenal problem so you can drop so fast. 

      As Anhaga says - if you get regular flares at 1/4mg maybe you should be taking very slightly more and then you wouldn't get those flares. 1mg is also a very low dose and if that then meant you didn't get any flares you wouldn't have to raise the dose to manage them - if you do that.

    • beatrice74480
      beatrice74480

      Posted

      Sorry fingers in way again haha.Well on half of 1mg daily is doing nothing at all according to my Rhuemy, however I cant entirely agree .However the flare ups you describe could possibly be the withdrawal symptoms from pred which do gradually decrease.Try taking a mild pain killer such as paracetamol I have found it does take the edge off. After being pain free on predicts hard to come to terms with aches and pains again just make sure they are Not flare ups and have regular Esr blood tests every couple months to make sure your levels don't increase. Stick with what you are happy with. Good luck.
  • patti52108
    patti52108 gloster

    Posted

    I was diagnosed with pmr in Dec. of 2015 after going through 4 months of crippling pain and a few different drugs including Cymbalta from my primary care doctor. This drug made me very ill after taking it for 1 month and suffered through the holidays until I could flush it out of my system. Saw rhematologist Dec. 28 who properly diagnosed me and put me on 25 mg of prednisone. Relief started right away and by about 3 weeks I felt completely normal! By the way my sed rate was 114 by the time I got help. Doc. reduced my prednisone to 20 mg on Feb. 10 and about 3 days later I started to get pain in my neck. Called Doc. and he says to follow what he says and my neck and into my shoulders are getting worse. I will wait until Mon. 2/22 to call back, I don't know if he thinks I'm crazy but I don't want to go back to were I was!!!
    • Anhaga
      Anhaga patti52108

      Posted

      Oh dear, another doctor who wants to follow the book rather than the patient's symptoms.  That being said, 25 mg was rather a high dose to start.  Could you suggest to him that you would like to try a slower taper as your symptoms are severe.  If they are pred withdrawal symptoms, rather than a return of the PMR, they should ease, but there is really no reason at all that you should have to suffer.  Others will be along to suggest how you could best manage a slower taper that should also satisfy your (rather unreasonable) rheumatologist!
    • patti52108
      patti52108 Anhaga

      Posted

      Do you think it could be withdrawal from prednisone? This is why I don't want to press the issue too much but it feels like it did when I started with the PMR. I also really want to be able to reduce the mg as I am afraid of drugs and side effects. Just waiting to see what happens by early next week. Don't know what to do!!
    • EileenH
      EileenH patti52108

      Posted

      If the pain took a few days to appear then it is less likely to be withdrawal - that usually appears immediately you reduce the dose and then improves with time but yours appears to be late instarting and getting worse - usually a sign the dose is no longer enough to manage the level of inflammation.

      For most people 15-20mg is enough to manage the inflammation in PMR but for some it isn't - it depends on the activity of the underlying autoimmune disorder  that causes the symptoms. If the pain continues to get worse then hoepfully your doctor will agree to going back and reducing in smaller steps - some peopleare very sensitive to the change in dose.

      However - all that said: are YOU doing your part in managing the symptoms? Just because you are on pred does not mean you can go back to your normal levels of activity, you must learn to pace yourself and not overdo things. Your muscles remain intolerant of acute exercise and activity and you must learn your limits and then rest appropriately. YOu will manage more without a return of pain if you do things in small bites - iron  a couple of items, sit and rest for the same amount of time. Clean one window, sit and rest and so on. The ideal? Find a cleaning lady!

      You will do more in time - but for the moment you are unwell and rest and pacing are the most important things you can do to recover.

      And you cannot just "reduce the mgs" - all that will happen is that the symptoms return and you will need even more. Acceptance and rest will lead to a reduction sooner than trying to fight it.

    • Anhaga
      Anhaga patti52108

      Posted

      Definitely pay heed to what Eileen says!  I learned the hard way that I wasn't cured by pred, just that the symptoms were controlled.  So instead of being all better and off pred by September last year, I have started the dead slow nearly stop reduction, and do a few other things to help ease the inflammatory processes in my body, and am at 6 mg (down from 15 start June '15.  That is considered a rapid taper and I am not recommending it for everyone.  The thing is, you want to find the lowest dose that controls your symptoms, and if you have to yoyo up and down you'll likely end up taking a larger total dose of pred in the long run.  Slow and stead is our motto.  Things Take Time!

      Put up in a place

      where it's easy to see

      the cryptic admonishment

      T. T. T.When you feel how depressingly

      slowly you climb,

      it's well to remember that

      Things Take Time.

      ~Piet Hein

    • elly77844
      elly77844 EileenH

      Posted

      Eileen, all the posts seem to be over a year old. But I will post anyway hoping to receive an answer. Thank you so much for your patient, detailed and knowledgeable answers. They have been very helpful for me. I have a question just about how this PMR all works.

      We have an inflammtion with lots of pain and stiffness.

      We take Prednisone and the pain and stiffness gets much better.

      So my questions are:

      1. does the Prednisone only affect the pain/stiffness or has it healing properties?

      ?2. if the Prednisone has no healing properties, how does PMR inflammation get better?

      3. If this is an inflammation why do anti inflammatories not work?

      4. and finally, let's say I am on 8 mg and going slowly down to 7 mg and get a flareup, do I go back to 15mg, or back to 8mg for several weeks and then try again?

      ?I hope to hear from you. Again thank you so much!

    • EileenH
      EileenH elly77844

      Posted

      1. It has no healing properties at all, it is just managing the symptoms by controlling the inflammation that is the cause of them.

      2. The PMR is due to an underlying autoimmune disorder that causes your immune system to attack your body tissues by mistake. While a lot of autoimmune disorders don't go into remission, PMR and GCA mostly do, the autoimmune bit burns out and stops causing the inflammation so there are no symptoms needing to be controlled. Think of it as being like a fire, eventually it goes out for one reason or another - just we don't know why a/i disorders do it.

      3. According to the literature, some people do manage their PMR with antiinflammatories - I'm not convinced that if they work it is PMR but that's by the by. Antiinflammamtories don't work for all forms of inflammation - it depends what the underlying cause is. In the case of PMR the best and most reliable management is pred - and at a dose that is safer than taking shedloads of ibuprofen which can have serious long term side effects.

      4) Go very slowly and don't ignore niggles and you won't have a flare up! As soon as you notice problems, whatever dose you are at, go back to the last dose you were good at. Wait a bit and try again. If that isn't enough - take the dose you flare at plus 5mg for a few days to clear it out and drop back to the dose you were good at. That will deal with a flare due to having gone too low. If the flare turns out to be due to increased disease activity, you may need a higher dose and to reduce again. But that is different.

      Have you seen this?

      https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    • Jaydy
      Jaydy EileenH

      Posted

      Your outline of the 'principles' of PMR was very helpful. However, I am a bit confused about my symptoms etc.Have managed to reduce to 2mg on the advice of GP. Have been diagnosed with quite severe arthritis in my spine, neck and hand and am finding it difficult to differentiate between PMR pain and arthritis pain (which seems to be pretty continuous and limits both excercise and sleep). Am in pain to a greater or lesser degree all of the time. It is almost three years since my PMR diagnosis.Any suggestions welcome.

    • EileenH
      EileenH Jaydy

      Posted

      Has the arthritis been diagnosed by the GP or by a specialist? And what SORT of arthritis? Osteoarthritis or inflammatory arthritis? 

      Basically I'd think all you can really do is use the pred to get the maximum relief and that is certainly what I would do. Only you can do that and it depends on your GP being helpful and not insisting that it isn't PMR pain so pred won't help. Pred responds to pred as long as the dose is right. So if it were me - I'd ask to try a higher dose and see if it helps at all, if it does, the same as usual with PMR, reduce and find the same dose that keeps you as good as possible. That is all you can ever achieve with PMR.

    • Jaydy
      Jaydy EileenH

      Posted

      I assume it is is osteoarthritis.It was diagnosed by consultant after xrays and MRI scans.
    • EileenH
      EileenH Jaydy

      Posted

      I asked because I was wondering whether it might be an inflammatory arthritis - one sort can present very like PMR. But if you have had an MRI it sounds as if the doctor was thinking along those lines. Good luck - hope you can contain the pain reasonably well.
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