Well told by rheumy to lower pred from 4 to 3 so nervous about it.

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Saw Dr. yesterday and she took blood and my counts are down so she is taking me to 3 prednisone and continue methotrexate at 5 pills once a week.  See where some who lower get a flairup. Not wanting that so here we go. Have this pmr for 1 year now and want it gone forever. Also I am to lower my vitamin D to 1000iu a day. Please let me here if anyone out there went from 4 pred to 3 and it went great. My sed is 24 and my crp 9 or whatever that is called. Is this good? What is normal?

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9 Replies

  • Posted

    Marilyn, yes your ESR result is fine and your CRP is only slightly raised - normal CRP is considered to be anything from 0-5.

    I followed advice to drop 1mg a month from 10mg.  At first everything was fine but I became aware of returning symptoms when I reached 5mg.  However, knowing no better at the time (it was some years ago) I continued as advised, dropping from 5 to 4 then 4 to 3, and then hit a brick wall necessitating an increase back up to 10mg.  When I reached 5mg again I was kept there for some 5-6 months to ensure the inflammation was completely under control before attempting to go any lower.  Although I was then advised that I could start reducing 1mg a month again, I decided that this time I would only do it in half mg steps and tapering over a much longer period.  This was after reading Ragnar's post on this site following his experience of being unable to reduce below 5mg until he hit on the idea of only reducing on a couple of days during the first and second weeks, gradually increasing the number of days at the new dose.  It may be easier for you as you are taking Methotrexate as well, but I'm not so sure, especially as your CRP is still a little high..  Plus you say you have had PMR for just one year - that is a very fast time to reduce down to as low as 4, especially as flares in the inflammation can be quite common in the first 12-18 months of treatment.   

    • Posted

      Thank you letting me know the count. I think I knew it at one time but forgot. I seem to be doing so well that I am afraid of the other shoe falling off. Even Dr. is surprised at how well I am doing for just one year with this. Went low carb diet and am finally losing some weight from the gain on pred. And moon face is going back to normal. So do not want a relaps of any kind. This wikll keep me on high alert!!!!!
    • Posted

      i have been on 10mg pred since January 2015, and my doctor wants me to reduce by 1mg every two weeks, the first doctor had me reducing by 2.5mg but i had a flare up, and went to see a different doctor after Eileen gave me instructions to tell the doctor about the reduction table. I went armed with all my paper work asking if she had done alll the neccessary blood tests,what the bsr guidelines were etc.

      my hubby was flabbergasted that i had asked the doctor this, and he told so when we came out, i said Eileen said i had to do this he looked at me as if i had 6 heads. so proud of myself as i would not have done this ever.

      I go for some more blood test on the 1st April and see the doctor 2 days later.

  • Posted

    I've been on pred for a little over a year now, and am now down to 2 mg.  I found that it was a more difficult transition from 5 to 4 than 4 to 3.  The doctor told me that our bodies make steroids similar to pred at about the level of 5, and at that point, the body needs to start making some to make up for the lowering.  It took about a week for my body to get the hang of it from 5 to 4, and also from 3 to 2 for some reason,  the jump from 4 to 3 for some reason didn't bother me.  I don't know if that helps you at all.  Just plan to spend a few days, or a week recovering after the drop I think.  
  • Posted

    Margaret: 1mg every two weeks below 10mg is still too fast - you need at least a month at each dose to be sure it is still enough. Below 7mg you need to be even more careful since as cindy says your body has to start making its own corticosteroid again.

    Marilyn: I'm in the process of trying 4 to 3 again, it didn't work the last twice, aches came back. I'm (obviously) using the same reduction as I always do. The slow reduction I recommend helps smooth the drops as no reduction should be more than 10% of the current dose - that is 1mg at 10mg but by the time you get down to 5mg it is only 1/2mg so really each drop is better done as 1/2mg steps. It is posts 4 and 5 of this thread

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

    Your bloods are fine - but that is most likely because your dose of pred is enough to manage the inflammation. Unfortunately some doctors appear to think that means the PMR has gone! Not necessarily so so be very careful and watchful with the reduction.

    • Posted

      Hi Eileen, not sure what a flare up is, I have just gone from 10 to 9 and did it slowly but   found I was  then getting hip pain and feeling more tired, also by taking lodotra can only drop i at a time, have gone back to 10  and feel better is this normal? thank you.
    • Posted

      A flare is the PMR symptoms returning because either the activity of the underlying autoimmune disorder has increased or the dose you get to is too low to manage its constant level of activity. If what you need is 10mg then that is what you need.

      If the pain started soon after trying the "dead slow and nearly stop" then it could be withdrawal but that is unlikely if you really went as slowly as that. If it took a week or two to start it is more likely to be the PMR symptoms returning because the dose is a bit too low. If you got to, say, alternate days 10/9 and it was OK then you have reduced some and could wait a bit at that before trying the other half of the 1mg reduction. That is the point - you can stop at any point you want without completing the entire 1mg reduction.

    • Posted

      thank you for that, I still had a small amount of pain on 9 then 10 but after going on 9 for about    10 days my hip/bottom was awful, so I guess I am back to 10 for a little while.
    • Posted

      If it is just buttock/piriformis area pain then consider looking for a Bowen therapist - a gentleman on another forum has just said 3 sessions has dealt with the sciatic/piriformis pain he's has had for over 3 years. 

      Often if it is just a localised problem it can be better dealt with with other therapies and that allows you to then reduce the PMR pred dose further than you could otherwise. Bowen is easy to access without a doctor. Other options would be a physio or sports massage therapist who knows what they are doing with PMR. Or a cortisone injection locally - that needs a doctor. It is beginning to be realised that it isn't all "PMR pain responsive to a low dose of pred" and that by identifying and dealing with local problems the overall picture is improved.

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