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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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  • danielle_65358
    danielle_65358

    Posted

    Update: so I've upped my dose to 12 the past couple of days 5 in the morning and 7 in the afternoon. I still have some residual pain. The pain in my neck and thighs have lessened quite a bit. But my right shoulder is still not good! Pain feels like bursitis. So?and my left knee is still stiff and painful. As the pain is not symmetrical I'm thinking these symptoms are not PMR pain? Withdrawl pain? I lowered my dose 12 days ago upped it on Friday.

    My fatigue is really bad. And I haven't been doing much. Not looking forward to work tomorrow.

    I'm missing the higher dose when I felt so energetic !!!

    Not missing side effects though 😁

    • Handbrake
      Handbrake danielle_65358

      Posted

      Hi Danielle,my Gp gave me an injection in my shoulder and I had 6weeks of pain free bliss ( all my PMR pains) this enabled me to exercise and release my frozen shoulder then I started oral prednisolone after the 6 weeks.
    • danielle_65358
      danielle_65358 Handbrake

      Posted

      Thanks Handbrake

      If this shoulder doesn't calm down I'm going to ask for the shot.

    • iellen32
      iellen32 danielle_65358

      Posted

      The tapering of the steroid is our main concern,

      As we are all different from each other we must find what works for us.

      In a general way though to go slowlyv on the tapering is a must !!!!

  • Daniel1143
    Daniel1143 danielle_65358

    Posted

    Danielle remarkably similar situation, I must say. My PMR began in my left knee and migrated to my right shoulder, then left and into my neck. Shoulder issues also feel like bursitis and flaring is not always symmetrical as evidenced by flaring in left knee and none in my right.  

    Like you, I worry that the condition I (we) have may not be PMR, but it remains the most logical diagnosis.  I am on the precipice of increasing my prednisone. Curious why you are choosing to split your dosage with more in the afternoon/evening?  Rheumatologitsts here recommend all in the morning.  Note that some folks on this site do split their dosage, and I am inclined to do so as well.

    • danielle_65358
      danielle_65358 Daniel1143

      Posted

      That's incredibly remarkable!

      I believe PMR started with my knee!

      Here's my story:

      I had a torn meniscus repaired with arthroscopic surgery 20 yrs ago. It would act up by locking or be sore but mostly, it had been fine. One day out if the blue, no injury, its on fire. Orthopedic and MRI says meniscus is torn again. I believe it's been torn again for a while. This pain is DIFFERENT. I can hardly walk.

      Anyway I get a very painful cortisone shot and I'm good the next day. Then wham! 3 days later my thighs,groin muscles and hamstrings are really sore. I chalk it up to limping because of the bad knee. Within days I have pain in both shoulders, down my arms,and neck.

      So now it's just the pain in the one knee and shoulder that persists.

      I remember years ago I had bursitis in that shoulder that's what it feels like.

      In re split dosing:

      My Rheumy though that the Pred wasn't lasting throughout the day and recommended I split the dose. I take it around 4:00 so it doesn't affect my sleep.

    • Daniel1143
      Daniel1143 danielle_65358

      Posted

      Interesting about your knee.  I was going to inquire about whether you'd had surgery on your left knee.  I had surgery on my left knee playing hockey in college.  41 years ago.  I surmise that the PMR tends to flare where there has bee prior injury.  Like you, left knee (January, '15) to both thighs (April) and tender groins.  Right shoulder starting in September.  Left in December. A continued and unwelcome migration.

      i believe I need a second shot of prednisone in the evening because I spiral Into the abyss around 4:00am. Plan to move back to 7.5mg, albeit reluctantly.  5 in morning and 2.5 in the evening.

    • danielle_65358
      danielle_65358 Daniel1143

      Posted

      I think you may be correct in that PMR will hit our weaker parts first.

      The 20mg I started with really helped all of it.

      I think my drastic reduction may have 'inflamed' those areas. The little bit I re-upped with has calmed the pain in my neck and thighs but, not in my shoulder and knee. Also, perhaps the cortisone shot in my knee from early Feb has worn off. I dread another.

      When you do begin to taper, I believe you should lower the afternoon dose first. Thanks Daniel. This has been helpful. smile

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