1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Tapering problems

Posted , 4 users are following.

sharon35553
sharon35553

Hi everyone, sorry this post may be long but have been away for a while and now need some advice. Diagnosed with PMR & possible GCA in Feb of this year and started only on 15 mil of pred and was a new person, no more headaches no more pain. Two months ago Rheumatologist began a slow taper by 2&1/2 mil for a month, then another 2&1/2 a month later. Im now at 10 mil once at 5am and after two days of the taper pain is beginning to reurn in my upper thighs, groin and neck. I also have a tremendous headache. My appt is on Sept 15th, he has me tapering on my own every month but now Im unsure if I should restart the other 2&1/2 mil that I was taking at 6pm with the first taper or go back to the original 5 mil at 6pm which had me at 100% pain free.

I wasnt to bad at the 12% either but Im confused at what some are saying here, one day at one dose and then a few days stay at another so Id appreciate any info on this tapering method.

 Taking just the 10 mil in am is not working for me.

Thank you all!

0 likes, 10 replies

10 Replies

  • EileenH
    EileenH sharon35553

    Posted

    In the reply section of this thread:

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

    you will find a description of a slow tapering approach. You can use it for 2.5mg at a time though smaller steps are better.

    I'm told it is possible to get 1mg tablets in the US - discuss it with your pharmacy - but much of what is discussed on this forum refers to availability in the UK which is where this forum, and both the others for PMRGCA, are based.

    You have probably dropped too far too soon - your rheumy may think that is a slow taper but many patients can't manage that much of a change at one go. It may be that at present you still need at least 12.5mg to manage the symptoms - that isn't unusual either. 

    I'm a bit confused by your figures - you started at 15mg pred, did you split that dose from the start?

    However - having re-read your post I note you complain of a bad headache - if you didn't have that at the start it is possible that your PMR is a symptom of GCA as that very often causes severe headaches. If that is the case you need to see your rheumy urgently - and if you have any visual syptoms of any sort, even just double vision, you MUST see him as an emergency and not wait for the 16th. GCA is a medical emergency as it can lead to loss of vision.

    • sharon35553
      sharon35553 EileenH

      Posted

      Eileen I did not split the starting dose, I took 10 mil in am and 5 pm.

      All of my blood work was fine and I was even sent to a Neuro Opthomoligist who said that there was no sense in doing a biopsy since I was already on the pred but he felt it was not a high enogh dose to start with, he felt the original Dr should have started me higher but the 15 worked immediately. I was fine on the 15 mil until previous Dr began the tapering.

      I see the Neuro Dr monthly so he is watching my vision regularly thank God. Was not getting any headaches or pain in scalp while on the 15 mil or when I was at the 12.5 so will slowly go back up to that dose until the 16th because I am not sure if I can just go back to where I felt good without slowly doing so.

      Thank you,

      Sharon

    • EileenH
      EileenH sharon35553

      Posted

      That's what we mean by splitting - the standard advice for taking pred in PMR is to take all the 15mg once a day in the morning.

    • Anhaga
      Anhaga sharon35553

      Posted

      I don't think you have to slowly return to your last good level.  It's reducing where you need to taper slowly, to avoid pred withdrawal symptoms which can be confused with symptoms of the disease.

  • harriet93582
    harriet93582 sharon35553

    Posted

    I have GCA and Started off with 60 mg of prednisone in June when I was n the hospital and diagnosed. I was put on this higher amount to prevent vision loss. Now I'm on 25 mg, I was given a taper chart and I taper off 1/2 mg every 14 days. It's a slow taper but even with this I get the inside and out shakes but so far no pain. Have no idea if my shakes are a normal side effect. . It sounds like your taping off is a big drop at one time. Also I never was given a time to take mine, now I wonder about this. I take

    mine with breakfast. I hope you get your problem resolved and start to feel better. 

    • sharon35553
      sharon35553 harriet93582

      Posted

      Harriet I was told that if I take it early in am it gives a better chance to start the day without the pain and it definitely works for me, then in the pm the additional dose does get me thru the night.

      My Dr has me tapering by 2.5 every 30 days but I am now tapering back up by 1.5 mil until im back at the 12.5 where I felt ok.

      I wake up at five and take a small bowl of cereal with milk and the pred and try to go back to bed for a few hours. By 8 Im feeling good but without the additional dose at night I get some pain and it seems the pred wears off.

      Thanks and good luck to you!

      Sharon

  • harriet93582
    harriet93582 sharon35553

    Posted

    After I taped off and felt bad my doctor told me to go back up to the previous mg. I think perhaps after you have a little more of the 15 ml and feel better then you can taper again, but ask your doctor. I started at 60 ml in June. I'm taking 20 now. My doctor has me tapering off every 14 days by 5 mg. I always feel horrible, shaky and weak even after three months. I think my doctor tapered me off to much. From this discussion group it looks like it compared to what others do, but I have GCA too. 

    • Anhaga
      Anhaga harriet93582

      Posted

      You do need to be especially careful with GCA.  Any return of GCA symptoms, get medical care immediately.  Hopefully that won't happen.  Now that you're at 20 mg it would be a really good idea to slow down your taper.  And certainly by 15 or 10 mg you should be reducing very slowly, tiny steps spread out over a long time.  Much more likely to succeed without a flare, and hence in the long run lower total lifetime consumption of pred than if yopu have to increase your dose repeatedly to deal with flares, which can happen with too fast a reduction.  I've just taken three months to reduce from starting 3 to the beginning of a taper to 2.5.  And have been on pred starting at 15 for something like 14 months now.  Even this is considered by some to be a fairly speedy reduction, and I have indeed been very careful to monitor my symptoms all along, slowing down the taper at times when I knew I wasn't ready.

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

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.