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prednisone reduction

Posted , 13 users are following.

flydog
flydog

Hi all,

I have reduced my pred  dosage to 3mg, I visited my gp, and with the results of my blood test  she suggested that I reduce to 2.5mg and to stay on that dosage, she has put this dosage on repeat prescription, and is quite happy not to see me again on a regular basis, if I suspect a flare up is on its way I have to have a blood test straight away, then make an appointment  to see her.

My question is do stay on 2.5mg or do I try to reduce futher??.

0 likes, 21 replies

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  • EileenH
    EileenH flydog

    Posted

    I'd stick there for a while - and check that your ESR/CRP don't rise in the meantime.

    After that, I can't see why you should have to stick there for ever - how long have you had PMR, I can't remember? The same would apply for every attempt to drop further. Stick at a level for a few months and then try again. It is a very low dose - maybe her experience is that people do better staying around there indefinitely. I certainly wouldn't object to that sort of approach. But the occasional try at another 0.5mg wouldn't be silly either.

    • flydog
      flydog EileenH

      Posted

      Thanks Eileen,

      I began with PMR in july and was put on 15mg, I reduced to 4mg, I then suffered a flare up in November and had to go back to 8mg, I have since reduced to 3mg, I will heed your advice and stick at 2.5,

      I supose I'm like many others, worried about the side effects of prednosine, but I will take your advice and stick to 2.5mg for longer, thanks, Max.

    • EileenH
      EileenH flydog

      Posted

      If you really DID have PMR that is a superb reduction from start to 2.5mg! I say if because there are a few things that look very like PMR but which resolve much faster and would do so with or without pred. However - this is the dream of any person with PMR: if you can't count on getting rid of the PMR at least be able to get to a really low dose to stick to until it goes away altogether. I never got under 9mg for literally years! I'm now at 5mg and perfectly happy to be honest, I'll stick here as long as it takes with an attempt ot get to 3mg every so often. I'm also good at 4gm, just better at 5mg (and it is half the price since 4mg requires 2x2mg Lodotra tablets). I've tried for 3mg twice, both times the fatigue that is just there at 4mg returned with a vengeance at alternate days 3 and 4mg.

      2.5mg is a really low dose - I don't think you have very much to worry about. What they are concerned about is cumulative dose and it will take 4 times as long to accumulate a given dose than it would at 10mg! Below 7mg is perceived as a physiological dose - equal to or less than what your body would make anyway naturally. Since there is some there it won't make quite as much, just enough to get you to what is needed - so longterm side effects should be minimal.

    • LayneTX
      LayneTX flydog

      Posted

      Wow Flydog! May I ask what your symptoms are? Any pain? 

      My uncle (husbands) too only had PMR symptoms for maybe 6 months, then they found his gallbladder needed surgery. He's pain free now. His wife kept telling me to get my gallbladder checked, hee, Hee, but I told her I have no symptoms for that.  Guess she hoped my PMR pains would go away.

      I'm excited for you if your is short lived!! Hope best for you! 

    • flydog
      flydog LayneTX

      Posted

      Hi Layne,

      I had severe pain in my shoulders,upper arms,elbows,hips,thighs,knees, I have also started with joint pains in my knuckles, the pains apart from the knuckles are subsiding which is giving me a chance to reduce, four years ago I had the spurs taken off my shoulder joints unfortunetly these are growing back and I'm unable  to lift my arms without considerable pain, I take 8x50 tramadol, maybe this is helping me to reduce the preds so after my op for the spurs I maybe pain free,Max.

      .

  • Nefret
    Nefret flydog

    Posted

    That's the kind of question which ultimately only you can answer.  I'd go down very slowly to 2.5 mg and then stay there at least until the weather warms up. If you then feel that you can reduce, go for it, but don't upset the apple cart.

    Staying on 2.5mg is no big deal, I'm on 5mg for life and the only time I remember that is when I'm replying to this kind of query!

     

  • angelcake61
    angelcake61 flydog

    Posted

    Hi

    im down to 3mg over 2 years, but I'm going to stay there until the warmer UK weather arrives, I can feel some aches in my wrists and knuckles as it's very cold today.

  • pauline36422
    pauline36422 flydog

    Posted

    wow that was a quick   reduction.  wish i could  do it   good luck hope you keep well

     

  • Charko
    Charko flydog

    Posted

    I am 73 years old and live in Southern California.  I have been on Pred for 4 years now and am finally down to 2 mgs and am prepared to stay on this for the rest of my life.  Rheum says she has lotsa long-term patients on this low dose. She advocates staying under 5 mgs.  Now, I still hurt but it's bearable.  I lead a hiking group and I still manage to hike but not so strenuously and osteo-arthritis is creeping in.  Old age is NOT for the faint-hearted.  OF CONSIDERABLE NOTE:  I believe that I do not breathe properly (I do not have sleep apnea) and find that deep breathing brings oxygen to my muscles and relieves the neck, shoulder and arm pain especially at night. I go around like a puffing old billy goat which can be embarrassing!  5 DEEP BREATHS, HOLD FOR 4 SECONDS, BREATHE OUTAND REPEATE 5 TIMES  IS A RELIEVER!  Try it.  Finally, my mother developed PMR at the same age as I did, aged 68.  I do believe it could be genetic or hereditary (wot's the difference?) Thanks, Charlotte
    • EileenH
      EileenH Charko

      Posted

      Genetic association means you carry genes that are associated with an increased risk of having something - Scandinavian genes in the case of PMR which is far more common where there is a Scandinavian ancestry. There isn't a specific gene that can be identified that "causes" the disease.

      Hereditary means that you inherit a specific gene from a parent or grandparent (some can skip generations) which means you develop a disease. With some you just require the gene from one parent to develop a disease and often the disease is passed through only the male side or only the female side. In others you have to receive genes from both parents, one gene means you could pass the risk of the disease to your children who, if they then married someone who also has the gene, would have the chance of a child who develops the disease. It all depends on whether the gene is dominant or recessive - dominant means you only need one copy of the gene, recessive means that you have to have to have two identical copies.

      Does that make sense? I can't think how to explain it more simply without writing for pages! Sorry.

    • margo25238
      margo25238 EileenH

      Posted

      I am so impressed with your replys Eileen; thank you for all the information and reassurance you provide for us. I love learning new information.

      (the following is from your reply to flydog)

      I2.5mg is a really low dose - I don't think you have very much to worry about. What they are concerned about is cumulative dose and it will take 4 times as long to accumulate a given dose than it would at 10mg! Below 7mg is perceived as a physiological dose - equal to or less than what your body would make anyway naturally. Since there is some there it won't make quite as much, just enough to get you to what is needed - so longterm side effects should be minimal.

      this is me margo   :Somewhere in that explaination could be helpful to me as well, and i am not understanding it well; would you restate it another way please?

      I had one flare at 5 - went back to 10.

      I have been dropping down from 10 - 7.5 - currently 7 - over a period of month and a half. am planning to drop to 6.5 in another week. 

      What can you tell me about this plan of mine.... and does it somehow connect to the info you provided in your reply to flydog

       

    • EileenH
      EileenH margo25238

      Posted

      Not sure which bit is the problem.

      Your body makes its own corticosteroid called cortisol - it is essential for life as without it your body won't function. When you take more pred than about 7mg/day the very complicated feedback system in the body means that the body just makes cortisol to "top up"  and that is very rarely required. Below 7mg it has to learn to make it again because the system is a bit sleepy if you have been on pred a long time - but if you reduce in small enough steps it will usually wake up and get back into the swing of things. We suggest 1mg maximum changes in dose, even then spread over a few weeks. This also helps you identify the right dose for you more accurately - you are not reducing relentlessly to zero, you are looking for the lowest dose that manages the inflammation as well as the starting dose did.It varies greatly from person to person and even from one stage of PMR to another, it may go down and back up again if you have a flare because the disease is more active.

      This helps with the cumulative dose problem too - the long term side effects are thought to increase with the total amount of pred you take from beginning to end of your illness. Often pred is given at a high dose for a few weeks and stopped, that doesn't cause too many problems. If you take a high dose for a long time it can lead to osteoporosis and increase the risk of many other things. We need to take as low a dose as possible because we will take it for a long time and the less we can manage with well the longer it will take to get to a high cumulative dose. That reduces some of the risk. 

      I would suggest reducing in smaller steps from now on - and also staying on each new dose for a few weeks before trying the next step down. If you reduced from 7.5 to 5 in one go and found 5mg wasn't enough to manage the inflammation then the right dose for you could be 7mg or it could 5,5mg or anywhere in between. Without testing the water thoroughly at each dose you cannot tell.

      You will find a description of a slow reduction method in the replies section of this thread - it has worked for a lot of people to get them to a lower dose than ever before and with fewer problems with steroid withdrawal effects.

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

      If I still haven't answered your question - do say.

    • margo25238
      margo25238 EileenH

      Posted

      Thanks Eileen - it will take me a few days to get my head around this; i will get back to with you with any other .questions

  • pauline36422
    pauline36422 flydog

    Posted

    well done to you.. like our friends say   getting off pred %100.  is not the ultimate aim,  its keeping pain free.  and if thats on a doseag  of 2mg.   so be it, i would love to be on 2  and be  pain free.  just 1 question do you still take   calceos or the like to keep your bones  strong.,
    • flydog
      flydog pauline36422

      Posted

      Hi Pauline,

       Yes I'm on cloecalciferol, I'm not pain free completely but who is at our age [73]  I think a little bit of pain is better than a lot of the side effects of preds, whats your views on this, Max.

    • EileenH
      EileenH flydog

      Posted

      It depends - if the pain is due to inflammation and you aren't on quite high enough a dose to manage that inflammation that is also putting you at risk of other things, cardiovascular disease and cancer included. If slightly more, 1 or 2 mg more, leaves you in a better state in all ways then the higher dose is probably better for you. If you need a lot more to achieve less pain then yes, a bit of pain is acceptable. 

      As I keep saying (probably ad nauseum) - it isn't a simple case of no pred good, taking pred bad. The entire thing is a balancing act. As long as the downsides are outweighed by the upsides, keep on as you are. But there is little point taking such a low dose of pred that you are in pain if a couple of mg does the job. And you have to decide whether the lower dose is actually achieving anything - sometimes not having a high enough dose leaves you in the same state you would be without any at all so having both pred and PMR side effects. In that case you might as well stop taking the pred altogether and at least avoid any pred risks.

    • LayneTX
      LayneTX EileenH

      Posted

      FINALLY!!! Doc Martin started back here in US!  I got to see the Polymyalgia episode last night!  Wish he had included the other pains which to me explains the "both sides of body" instead of just saying her neck hurt, but glad they introduced the CGA and need for Prednisone.

       

    • LayneTX
      LayneTX

      Posted

      oh, and the need to slow down, which is cute that character Aunte doesn't want to do. 
    • Anhaga
      Anhaga LayneTX

      Posted

      Yes, I saw it a few weeks ago in Canada, and I was disappointed.  Makes you wonder how accurate the depictions of other diseases are.  But Ruth's PMR does come up in passing in subsequent episodes so at least its chronic nature is acknowledged.
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