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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

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  • iellen32
    iellen32 danielle_65358

    Posted

    The tapering of the steroid is tje

    complicated point we face.,

    After having flare ups doing the quick reduction i decided to follow my body paying close attention on the signs my body gives to me.

    I keep the same amount of the steroid for weeks and then very carefully I go down and if it does not work I immediately increase the dose for tha amount I had been taking,

    Take care.

    😉

    • danielle_65358
      danielle_65358 iellen32

      Posted

      Thank you

      Going forward I will follow a much slower taper schedule. I'm hoping the 10 mg taken in 2 separate doses will help. I can only wait and see. Thanks

  • ptolemy
    ptolemy danielle_65358

    Posted

    That drop seems much too high to me and hardly surprising you have problems, ten per cent max drop at any one time is a rule of thumb. My rheumy tried to get me to reduce twenty five per cent initially and it was disastrous, he seemed dead set on me reducing as quickly as possible. I found paracetamol worse than useless, you need enough pred to keep the inflammation under control. Yoyoing is generally not too good an idea as it muddles the body, but you do need to take it easy when tapering. I think a lot of rheumies do not seem to get their heads round the fact that pred is the only real medicine for PMR unlike things like RA. 
  • andypolly
    andypolly danielle_65358

    Posted

    I started on 20 mg on 23 December and am now on 12 and plan to go down by 1 mg every 3 weeks till I get to 8mg when I will go much slower. To drop from 20 to 10 so quickly seems to be asking for trouble. Everybody seems to react differently to pred rrductions. It needs to be a collaborative decision with your medic not an imposition.
    • danielle_65358
      danielle_65358 andypolly

      Posted

      Andypolly

      I'll definitely slow the reduction rate going forward. I just hope I can 'even out' at 10mg

  • Handbrake
    Handbrake danielle_65358

    Posted

    Hi Danielle,your Rheumatologist knows your full medical history and so I would like to think he is the best to advise you however,the lack of scientific knowledge about PMR has led most of us to rely on experience of others.This site is so helpful in that respect. My reduction was a lot faster than many on this site but then I started at a lower dose initially and slowed down the taper once I had reached 5mg. its a steep learning curve about whether it's iPMR  or prednisolone related symptoms affecting your body.The key for me is if I experience bilateral pains it's PMR and I need to up my dose till I am comfortable and able to mobilise, I wouldn't worry too much about your split dose of 10mg and 5mg at least this will give you a chance to see if it works. I struggled to sleep at night if I split my dose however some people have found that taking the second dose at 2pm works well for them. I'm sure your rheumatologist has a reason for reducing your prednisolone ( you might like to ask him why !) but it's not a race and getting the pain and inflammation under control helps you to manage other lifestyle factors such as diet and exercise which can also help the reduction process. 
    • danielle_65358
      danielle_65358 Handbrake

      Posted

      Handbrake

      I think I wanted to believe the reduction wound be ok. I honestly sat in my car after my appt debating.

      I believe high BP, extra 15 lbs, and my big rounded face prompted the doc to reduce me.

      I'm hoping to feel just as pain free on 10 as I did at 20. And hopefully with less side effects.

      This site is a blessing. Thank you.

    • Handbrake
      Handbrake danielle_65358

      Posted

      Hi Danielle,yes it's good to get the reassurance from others on here. somehow helps to know we are not on our own and see how others have tackled the problems. It does seem really quick to experience the down side effects of prednisolone are you taking anything for your other auto immune problems?
    • reggie92967
      reggie92967 danielle_65358

      Posted

      Oh wow, my face is lihe a helium balloon, gained 30 pounds, & BP going crazy too. I've been reducing 1mg every 1-2weeks, my fam. doctor wants me staying at 15mg for now. It's only been 4-days at 15mg. but seems okay. He weaned down very gradually from 22mg. He's really been great at doing trial & error, & very cautious.
    • danielle_65358
      danielle_65358 Handbrake

      Posted

      I also take synthroid for thyroid replacement. And supplements a multi, calcium, and complex B
    • danielle_65358
      danielle_65358 reggie92967

      Posted

      Reggie

      I think I read somewhere that the weight and puffy face go away as our doses get in the single digits Not sure how true this is but we can only hope.

    • Handbrake
      Handbrake danielle_65358

      Posted

      It could also be that your calcium tablets are reducing your thyroid replacement resulting in headaches and weight gain double whammy with prednisolone, do you take them at different times?
    • danielle_65358
      danielle_65358 Handbrake

      Posted

      Handbrake

      Yes. I take thyroid med first thing in AM and I take the supplements after lunch.

      Since the drastic reduction over a week ago I feel like everything is out of whack. I hope to regain some balance soon. Thanks

    • Handbrake
      Handbrake danielle_65358

      Posted

      No wonder you feel out of sync but you will get there. Good that you have split your other medication. your cushionoid symptoms caused by too much cortisone should reduce as prednisolone is reduced however going from 20mg (2x10) to 10 (2x5)in one go sounds and I'm sure for you feels drastic! How did you feel after your 10mg then 5mg
  • Daniel1143
    Daniel1143 danielle_65358

    Posted

    Having been on this site for a few months now, my observation is this: we are not managing our PMR.  It has a mind of its own.  We are managing prednisone. There appears to be no cure for PMR, and it apparently burns out in time.  But that time varies.  Moreover, it comes and goes in periodic flares.  It moves about the body,surprising us as though it were the fox and we the hounds. And on this site, it's more about dealing with prednisone than anything else

    from everything I know and have read, a drop from 20mg to 10mg is way too fast if you've been on the higher dose prednisone for more than a week or two.  My Rheumatologist did say I could take a flash dose of 15mg then drop back down if I flare badly, But that's an exception. I was prescribed a taper rate of 2.5 mg per month in my decent from 20mg. At 10mg, it's 1 mg per Month.

    i got down to 5mg and my PMR returned in full relapse.  Heading back up to 7.5 to see if that's my threshold.  Had hoped I could get off prednisone but the disease is tougher than I am. 

    • danielle_65358
      danielle_65358 Daniel1143

      Posted

      Daniel

      Sorry about your relapse. I hope 7.5 helps.

      Thanks for the info on flash dose, that does ease my mind a bit about taking that extra 5 yesterday.

      You're absolutely right. We are managing the Pred.

    • danielle_65358
      danielle_65358 Daniel1143

      Posted

      Daniel

      Could you explain what you said about 'flash dose' ?

      I'm currently at 10.split dose of 5 in the am and 5 late afternoon. Withdrawal symptoms are better but it seems like the PMR is slowly returning!

      I'm wondering if a few days of an extra 5 might "get it in check agsin"

      Thanks

    • Daniel1143
      Daniel1143 danielle_65358

      Posted

      I was cruising along at 5mg and doing ok until I had a really bad day.  Worst in a year. So I called my rheumatologist and he said to take 15 mg the next day, then 10 on day two before returning to 5mg.  A bit like a shock to the system.
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