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Prednisone Reduction - accompanied with discomfort?

Posted , 19 users are following.

gilman
gilman

When one reduces the dosage of prednisone, is there normally a slight increase in pain, stiffness, etc. that one just puts up with that eventually levels out?  I am wondering if such an increase is something to deal with or is it a sign that the decrease was inappropriate or premature.

0 likes, 28 replies

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  • jo42444
    jo42444 gilman

    Posted

    For me and others it is a really big deal when you cannot walk bend or carry. In other words it deeply effects your daily living. Basic tasks become impossible and so for every reduction there is a 2 week period where life becomes very difficult. I would count myself very blessed if the prednisone got rid of all the pain and there were very few side effects when reducing. Joanne
    • barbara75814
      barbara75814 jo42444

      Posted

      Hi, Jo,

      I am no doctor, but if I were feeling unable to walk, bend or carry when I was trying to reduce the pred, I would think it's too much of a reduction, --entirely too much--and I would reduce the reduction accordingly. In my case, eventually I used the super-slow reduction method--SUPER-SUPER SLOW--and thank God, it took me to the end without problems. (I'm no longer on pred.)

  • alley2
    alley2 gilman

    Posted

    Hello hey does anyone else have trouble with this site freezing their computer and making replying frustrating?  Okay I was on 50mg pred for ten days then  on 37.5mg Pred for ten days  then Doc wanted me to go 25mg pred well for me that lasted 7hrs I started to get headaches then my scalp got itchy & body started to ache  I took 12.5mg of pred and all went away within a couple of hours. I feel that this 37.5mg amount might be good for another 2 weeks while my body stablises to this amount  then start reducing again Could this be a way of reducing any feed back be of help thanks.  

    • ptolemy
      ptolemy alley2

      Posted

      Sometimes I have terrible trouble replying and my computer virtually stops. Also sometimes when I type the words are in grey and not black, the whole thing is then ignored. Very frustrating. This is the only site I have ever had such problems. 
    • linda17563
      linda17563 alley2

      Posted

      Yes, mine keeps freezing, then I lose patience walk off, and it eventually "sends" it must be doing the "dead slow method" like us!.

      ?Fatigue (some pain) is my battle with dropping pred....and I am doing it very very slowly!......we are all different, and dosen`t help we have doctors/rheumies with different ideas either....I work it out myself mostly now....

  • ronald39523
    ronald39523 gilman

    Posted

    I have found that taking the daily dose down by 1mg daily sometimes resulted in a small increase in pain for a couple of days so my doctor suggested 0.5mg reductions which seem to have worked fine. I have blood ESR tests roughly everyv10 weeks and they have all been good (first diagnosis 12 months ago).  I started briefly on 20mg daily then fairly quickly got down to 10. I am now on 6.5 hopefully getting down to 6 and lower over the next few months. No recurrence of pain so it seems to be working. R
  • EileenH
    EileenH gilman

    Posted

    If the pain and discomfort starts immediately you change the dose and then improves over the next week or so then it is probably steroid withdrawal symptoms due to the change of dose. If it takes a few days to start and then keeps increasing then it is that you are probably now at too low a dose to clear out the new dose of inflammation that starts every morning and it mounts up, like a dripping tap fills a bucket over time. 

    So if it starts and improves - stick it out until it is gone. If it increases - go back to the last dose. Next time try a smaller reduction if that is possible. There is a reduction scheme that has been designed to minimise either of the problems in the replies to this thread:

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

    But however you try to reduce - as long as the disease process is active you will only get as far as the minimum dose that manages your inflammation and so prevents pain and stiffness. You are looking for the lowest dose that gives the same result as the starting dose did - not 100% freedom from pain, just the best it gets. And you have to help it by pacing and resting appropriately. 

    • gilman
      gilman EileenH

      Posted

      Thanks so much. Your answer is exactly what I wanted to know.  Now I can better access the situation as I begin my slow reduction.  Luckily, I have been able to get down to to 7.5 mg daily, split into two doses.  I have slight pain in one shoulder, nothing like what I first dealt with, but when I tried to decrease any more the shoulder pain increased as well as some pain in other muscle groups.  I went back to 7.5 and in a couple of days was back to where I was.

      One other related question, if I were to up the dose lets hypothetically say to 10 mg for a few days due to pain or anticipated activity would this set me back making it difficult to drop back to 7.5?  Or should I be able to get back to the lowest dose that had been working?

    • EileenH
      EileenH gilman

      Posted

      You should be able to drop straight back to the previous dose as long as it isn't more than 2 or 3 days - unless of course it is a real flare in which case it is likely you may need to stay at that slightly higher dose for a bit longer and then reduce slowly again to find the new lowest dose.

      This is a dose that seems to cause a lot of people trouble - no idea why unless it is the adrenal glands being very slow to wake up though why it should apparently lead to flares I don't understand. 

    • gilman
      gilman EileenH

      Posted

      That is really good to know.  I have toyed once or twice with taking a bit more on an uncomfortable day but restrained, not wanting to set myself back weeks or months.
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