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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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  • mike42494
    mike42494 danielle_65358

    Posted

    The same thing happned to me as I was tapering from 20 mg to 10 mg. my pain started to return about day 3.  10 mg was not enough for me. I was 95% out of pain with 20 mg.  i went off completely from March 1st to March 27th then told the doctor my pain level was unbearable again. Now I am back on 20mg with very little pain after 3-4 days. This time I am weaning off all my other meds and staying on Pred. I drink diet Cranberry juice to help get rid of extra fluids and try and watch what and how much I eat so I don't gain too much weight again plus I walk a mile per day.
    • danielle_65358
      danielle_65358 mike42494

      Posted

      Thanks Mike. Good luck. I guess we all just keep hoping we are the one exception to the slow weaning process. But we are not.
    • reggie92967
      reggie92967 mike42494

      Posted

      Mike, I read long ago in a diet/nutrition book, cranberry juice good antidote for fluid retention. I bought a bunch of low cal. but haven't tried it yet. Do you find it does work well for you ?
    • mike42494
      mike42494 danielle_65358

      Posted

      Does anyone else get stomach cramps from Pred? My cramps srarted yesterday and won't go away. I heard Yogart is good to coat the stomach. I had tea and honey this morning and now I'm sitting with a warm heating pad on my stomach.
    • ptolemy
      ptolemy mike42494

      Posted

      Mike, Are your pred tablets coated? If not doctors often offer a PPI in addition, to alleviate stomach problems. Some people just take yogurt with their pred rather than more pills, I think it depends on the individual. 
    • mike42494
      mike42494 ptolemy

      Posted

      They are not coated.  I take a daily acid reducer Omeprazole. I'm going to buy some Yogart today.
    • ptolemy
      ptolemy mike42494

      Posted

      The Omeprazole should help, I hope the yogurt does as well. You could ask for coated tablets perhaps.
    • Anhaga
      Anhaga mike42494

      Posted

      You will wean much more slowly next time won't you?  No more than 10% of the dose, and at least a week on the new dose until you get to 10, when it gets much slower.  This is one race the tortoise tends to win!

       

    • danielle_65358
      danielle_65358 mike42494

      Posted

      Mike

      Yesterday morning I had a terrible stomach ache a shirt while after I took the Pred. I took it the same way I usually do. With a protein breakfast shake.

      It lasted about an hour.

      Perhaps you caught a bug. Or drank too much water? Sometimes there are other factors aside from PMR and Pred. Hard to believe right? Ha

      "honey you can have a toothache and a hangnail. It doesn't mean they are related"

  • reggie92967
    reggie92967 danielle_65358

    Posted

    Why oh why do these seasoned doctors do this to people. Almost anyone knows tapering must be done very slowly. My Rhuem. specialist tried a 5mg. reduction every other day, after 3-months on 15mg. & doing great, but I too crashed terrible. The headache was almost unbearable & also had to take something strong for the pain. I also felt all over terrible, laid on the bed for 4-5 days, couldn't do anything until the mgs. increased. Now it's never more than 1mg. reductions at a time. My family doctor has been wonderful, monitoring the prednisone & PMR, doing labs every week to 2-weeks, in between my Rhuemotolgist visits every 3-months. We have to speak up & speak loud sometimes, always being our own best advocates. Best to you Danielle !
    • danielle_65358
      danielle_65358 reggie92967

      Posted

      Reggie

      Your reduction story sounds so similar to mine. And you also suffered the reduction headache! Awful.

      After the 4-5 days did you return to 15mg and then begin a slower taper?

      Thanks,

    • reggie92967
      reggie92967 danielle_65358

      Posted

      Yes Rhuem. when contacted him by phone imnefuately upped me to the 15mgm then up to 17.5mg. & on up to 22mg. Now been doing the reduction back to15mg. So sick of being fat & bloated, my appetite is unsatisfiable, (is that a word ?) : )
    • danielle_65358
      danielle_65358 reggie92967

      Posted

      I too had an huge appetite on the higher dose. Since I reduced (by too much) I'm not hungry at all. Something positive I guess. 😏
  • danielle_65358
    danielle_65358

    Posted

    Thanks everyone for sharing your experience and offering advice.
    • reggie92967
      reggie92967 danielle_65358

      Posted

      Has anyone experienced easy agitation, nervousness, emotional ups & downs ? I find myself doing allot of swearing, grumbling, chewing people out, under my breath, when out in public. My wife & I laugh at it because I'm a very nice guy who loves people, & it's so unlike me. We know it's the prednisone & subsides with lower doses.. I'm a priv. prac. psychotherapist so I know & understand my emotional self very well.
    • danielle_65358
      danielle_65358 reggie92967

      Posted

      Yes! I used to think of my self as a positive upbeat person. Lately, I do a lot of complaining about the most mundane things. Just p*ssy about having this issue I suppose.
    • iellen32
      iellen32 reggie92967

      Posted

      Sorry for all you are going through.

      Wish there will be a way to get a relief and then to get rid at all of it!

      Take care.

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