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PMR symptoms or Pred Reduction?

Posted , 11 users are following.

danielle_65358
danielle_65358

Apr 1

Started 20mg (10mg twice a day) on Feb 13. At first follow up appointment on Mar 22, rheumy was adamant about reducing. He was firm about dropping to 10mg once a day. I questioned the 50% reduction. I questioned the 'once a day' dosage. I had serious reservations from what I had been reading here on patient about tapering. But, he's been treating me for 20 yrs for other auto immune issues. So I followed doctors orders.

Within 2 days I began to notice a difference. My sensitive teeth and sore tongue had lessened so that was good. But I developed an afternoon headache that persisted no matter which pain reliever I tried: Ibuprofen, acetaminophen, even a Vicodin. The mornings I awoke without headache. They start after lunch like clockwork. That's usually when I take my supplements. I stopped taking them at day 6 thinking maybe the Vit D was interfering with the tapering? Didn't help.

The 20 mg pred had relieved about 70-80% of my PMR pain. My left knee has been an ongoing issue and pain in my right shoulder still persisted but it was lessened for sure.

I awoke yesterday morning in a sad state. Both shoulders, arms, back of my thighs. My knee was visibly inflamed, stiff and painful. I cannot bend it more than 120 degrees. This pain lasted throughout the day. Not 'morning stiffness'

So , I'm thinking this may just be withdrawal pain due to 50% reduction. As pain in my hips and groin were a huge problem pre-diagnosis and so far no pain there.

Placed a call to rhemy's office, he called me back within an hour!!! Unheard of! I asked to up the Pred. He says no, take paracetamol and split the Pred dose. 5mg in AM and 5 in evening. He thinks the Pred wasn't lasting the day. Sounds plausible.

As I already took the 10 this morning and figured 5mg tomorrow wouldn't do, I took another 5 at 5:00pm. So total for today is 15mg

Here's my concern. Did I just mess up everything by taking the extra 5 and going back to 10 tomorrow in a split dosage?

Moreover,

Is there anyway to differentiate whether these are withdrawal symptoms or is 10mg Pred not enough to mask the original PMR pain.

The extra 5mg didn't do much to alleviate pain but....

Tonight is the first time I haven't a headache. Silver lining!!

Sorry if I rambled a bit. Thanks in advance. 🌺

0 likes, 61 replies

61 Replies

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  • danielle_65358
    danielle_65358

    Posted

    One more question

    IF the pain I am experiencing is in fact Pred withdrawal from tapering too quickly. Will I eventually even out? Can I just push through?

    any ideas on how long that would be?

    • andypolly
      andypolly danielle_65358

      Posted

      If you're tapering too quickly, which people replying to you seem to think, the pain is being caused by the polymyalgia inflammation. The only thing that stops that is the pred. Inflammation won't just go away if your pred dosage is too low.
    • iellen32
      iellen32 danielle_65358

      Posted

      If you go back to a dose of Pred you feel is right for you you stick on that for a while and then try to adjust it carefully.

      I see we all have the same experience regarding the quick tapering.

      Once we learn the lesson we become ' wiser than never before...'😜

      And on top of that we

      must keep laughing....the best remedie of all!!!

    • ptolemy
      ptolemy danielle_65358

      Posted

      Hi Danielle, if you have pain you cannot just sit it out, you need to get the inflammation under control again. I tried it, a big mistake! If you have some pain just when reducing and it goes away after a day or two that is fine, but if you start to flare you will need to increae the dose.
    • free2beme
      free2beme danielle_65358

      Posted

      I did not level out when I tried reducing from 8 to 7. I felt like everything was starting all over again. so I uped the pred to 7.5 and then I was fine. I took that for several weeks and then went to 7. Another several weeks later I went to 6 with no problem. I am anxious to get to 5 but I am taking it slow and easy.
    • danielle_65358
      danielle_65358 free2beme

      Posted

      Thanks Free

      I guess I wasn't leveling out either. 10 was too much and too quick of a reduction from 20. I may be fine to manage at 10 but I found out the hard way that I have to try again slowly to find out

      Friday, 10 days after my initial drop, I took 15 out of desperation and against docs orders. The past 2 days I'm a bit better at 12. I'll wait a few weeks and drop again to 10. Then maybe I'll know where my manageable dose is for now.

    • Anhaga
      Anhaga danielle_65358

      Posted

      I recommend you drop by only 1 mg next time.  You are getting so close to the 10 mg range where nearly everyone seems to hit a bit of a road bump.  Slow is more likely to be successful.  You probably will only have to stay at 11 (this assumes that 12 has continued to be all right) for a week or two before dropping to 10, and then after a couple of weeks at 10 you will hopefully start the dead slow method which amounts to about 1 mg per month, done gradually.
    • Anhaga
      Anhaga danielle_65358

      Posted

      Danielle, re pred withdrawal: I've been following dead slow nealy stop reduction since getting to 10.  Actually i got to 9 from 15, but at 9 felt gradual retun of pmr symptoms over course of about nine days.  Went back to 10, noted improvement (although it was never as good as the first few euphoric weeks on pred), stayed there for a few weeks and then started the slow reduction.  Since then I've averaged about 1 mg reduction per month and am currently at 5 mg.  During this time I've noticed immediate return of symptoms, although very minor, when first starting a reduction, particularly since 7 mg.  As i persist through the reduction this discomfort eases and goes away so that at the end of each taper I feel at least as well as at the beginning.  This I believe to be pred withdrawal.  If it were pmr I am sure the pain would begin to worsen.  This is why the dead slow method is so good - you have time to distinguish between a genuine flare and temporary pred withdrawal.  And, I don't think it can be stated often enough, for those of us whose lives allow it balancing appropriate exercise with periods of rest is very, very helpful.
    • danielle_65358
      danielle_65358 Anhaga

      Posted

      Anhaga

      Yes! That is exactly what I will do. I'll wait a week a two then I'll drop very slowly. 1mg a month.

      Thank you so much for your clear explanation. It's exactly what I trying to figure out. You're a blessing.

      Good luck with your future reductions

  • Daniel1143
    Daniel1143 danielle_65358

    Posted

    From all I have read, there is no question that the slow taper is the only viable approach to weaning off prednisone. That said, as many of us learn, you can not taper faster than the PMR will allow.  So we all try to find the happy medium between a low dose that allows us to function, and the lower dose that results in a relapse.  

    PMR is like a dark force roaming your body (and mine!). Has a mind of its own and ebbs and flows like the tide.  In time, they say it burns itself out.  I tried very hard to taper to zero and deal with the pain until it became unbearable.  I guess have to be patient as I am one.

  • Anhaga
    Anhaga danielle_65358

    Posted

    I echo those who say your dosage drop was far too much in one go.  You could have achieved the same result with less shock to the system by reducing 2.5 mg per week for  a couple of weeks and then 1 mg per week until reaching 10 mg.  That method would also have alerted you to any point where pains began to return, if they were going to.  At 10 mg the reduction becomes slower, closer to 1 mg per month rather than per week. You can generally distinguish between pred withdrawal and return of PMR by timing.  Pred withdrawal is immediate and will lessen in a few days.  PMR pain worsens over the days until you know you are not getting enough medication.  With a huge drop like you've had to make I wouldn't be surprised if it's a bit of both.  The doctors really do need to give us time.  In the big picture, what's an extra week or month in reduction if it avoids a flare that might meen you end up taking more pred in the end?
    • danielle_65358
      danielle_65358 Anhaga

      Posted

      I totally agree. I think I'll try 15. With 10 in the AM and additional 5 in the afternoon for a bit and then see where I'm am. Thank you.
  • free2beme
    free2beme danielle_65358

    Posted

    I started with 50mg a year ago.PMR came on suddenly while visiting in FL. There was so much pain even while being still and not moving. It quickly went away with the use of prednisone. Side effects were terrible. I am now down to 6mg. but will have to have physical therepy to strengthen my arms and legs. I am 62 and the Rheumie said I was young to get this. When I went from 7mg to 6 I started getting withdrawal symptoms/relapse. I went up to 6.5 and am fine. You definately went down too fast in your dosage. I am hoping to get of prednisone this summer. I am so sick of taking pills along with the prednisone that counteract the side effects of prednisone. Some swelling has gone down in my face. My wrists bother me every morning from originally having carpal tunnel many years ago but I can handle it. I had spells of depression but am now feeling better. I am looking to see the end. I wish you luck in your tapering off.
    • danielle_65358
      danielle_65358 free2beme

      Posted

      Thanks for the reassurance about the face at a lower dose. I find I do get pain and stiffness when I sit still too.

      Good luck in your journey to be done!

    • Anhaga
      Anhaga free2beme

      Posted

      I hope that as summer comes on you feel better.  I'm sure we can all do with more sunshine!  Good that you've got your dose down so low.  I've started hanging around 5 mg and hoping for the best.  confused
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