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Has anyone needed to increase their Prednisone dose?

Posted , 9 users are following.

valdez
valdez

My Rheumatologist prescribed 15 mg Prednisone taken in the morning, but it isn't enough to help the symptoms.  I also think taking an extra 5mg in the evening helps alleviate morning stiffness, which is when I have the worst pain.  Please share your experiences.  Thanks!

0 likes, 34 replies

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  • Elijo
    Elijo valdez

    Posted

    I have discovered on this forum from several dicussions that rheumys seem to want to give very small doses of pred, andto get off of it fairly fast, as possible.  Igot R last October andmyGP prescribed a larger dose at first and it has been tapered, now that I'm low, was down to 3.5 I had returning symptoms and am now trying 6mg. Strangely enough,my sister had developedwhat the rheumy thinks may be PMR. She's in dire discomfort, he prescribed 5 in AM + 5in PM.  I don't feel that  is enough and I told him I had PMR and was started on a larger dose. ( he is not my MD).  He had not interest in what I said or the comparison, and asked me if I was trying to tell him whatto do!  Isaid no more.  We'll see what happens.  He will see her in 2 weeks.  So obviously he knows everything.

    • EileenH
      EileenH Elijo

      Posted

      Just the sort of rheumy to avoid...

      That 5mg in the morning and 5mg in the afternoon does not tally with anyone's guidelines - over the last 20 years or so. The top 40 rheumatologists have just brought out their latest recommendations for PMR - and they are adamant: as a single dose in the morning and at least 15mg, preferably 20-25mg to start with and then taper ACCORDING TO THE PATIENT. If you can't go as fast as they'd like - that's fine.

      If he has a patient on a silly dose of pred and the patient is still in discomfort he's doing no-one any favours: you have to be on a dose that does the job or you might as well not be on any. If it isn't enough you have all the downsides with no upsides to balance them out.

    • valdez
      valdez EileenH

      Posted

      Yes, my regular GP has been on leave, and she is very flexible.  I'll consult with her in another week. 

    • Elijo
      Elijo EileenH

      Posted

      Amen!  I've been lucky to even get my sister to a MD, she is so reluctant.  I take her and go in with her so being a medeical person I get the lingo. She just turned 90.  He's suspecting something with the ovaries and ordered an abdominal ultra sound.  So we'll see in a couple weeks!  Thanks Eileen.

    • donna60512
      donna60512 EileenH

      Posted

      Splitting the dose was the only thing that got me through this.  The 5 mg in the morning and 5 with dinner has meant that I have been pain free, totally.  My energy has come back too.  My rheumatologist also said it shoudld be all in one does.  Well, he was not the one in pain.  He ended up even writing my presctiption to say, "Take one tablet twice daily."  It may be harder to do this when the dose gets down to 5 mg a day, but it is working for me.  Prior to this, I had a few hours every morning where I could do nothing.  I was miserable, as soon as I did this, I felt wonderful.  I would love to hear from others who have split their dose.  Donna

    • EileenH
      EileenH donna60512

      Posted

      We do suggest to many people on the forums that they try splitting - and there are plenty of people on the 3 forums who do. However - you don't START by splitting, you clear out the existing inflammation with a higher dose and THEN  you start splitting as you get to lower doses if the effect isn't lasting the entire 24 hours. There are people who will be able to get relief with 10mg, some even with 5mg, but they are the exceptions. Horses for courses...

    • donna60512
      donna60512 EileenH

      Posted

      Okay, thank you.  I was a couple of months into this when I started splitting.  Actually, after I wrote the orignal note today, I remembered that I was still on 20 mg when I began splitting.  I was so afraid of just 10 and then 10, that the very first day, I took the 20 mg in the morning and then 10 mg at dinner.  That was the only day that I took a total of 30 mg.  from then on I took 10 mg in the morning and then 10 mg at dinner.  When I reduced, I went directly to 10 mg in the morning and 5 mg at night.  I had been at  5 mg and 5 mg for quite a while now.  I have been using your method to get to 7.5 mg.  As I wrote in the other post, I am now at old does three days, new dose one day, etc.  I think it is the middle of October that I should be at 7.5 mg a day.  I am not sure once I get really low if the split dose will be okay.  I will experiment with that.  I am happy that I have been pain free.  Thanks for clarifying this.  Donna
    • Elijo
      Elijo EileenH

      Posted

      I don't really think her symptoms improved much at all on the trial pred of 20, then 10 from the GP).  So now she's getting 5 BID.  The rheumy didn't wnt to hear anything I said to say when I started to tell him.  She's going to have to stick with this guy for a while, because I was lucky to even get her there.  It all seems to be a  big puzzle, and I'm wondering if because it takes so l-o-n-g for her to agree to get help, if things have excerbated almost out of control (there goes me mind working overtime!)

       

    • EileenH
      EileenH Elijo

      Posted

      I'm sorry - but I am going to mention the elephant in the room. PMR can be a symptom of an underlying cancer and that is one of the differential diagnoses, If she didn't respond much to 20mg pred then I imagine that's why the rheumy is doubtful it is PMR - and at the age of 90 there has to be a high suspicion there is a cancer of some sort developing - all of us would develop cancer if we lived long enough. 

      I do appreciate your problems getting her to a doctor - but it may be a rheumy was the wrong choice. Though he should be quite capable of doing the necessary for a differential diagnosis.

      Sorry again for mentioning the unmentionable - but it must be thought of.

    • Elijo
      Elijo EileenH

      Posted

      Thanks so much for all of you input, and it HAS been very helpful.  CA has crossed my mind espec. when he wanted an ultra sound of the ovaries & abdominal area.  I first got her to my GP who did the 20, 10 trial pred.  He recommended the rheumy who they got in touch with her for an appt. The rheumy does not even know she had the trial of 20, 10mg. pred a few weeks ago because he did NOT want to listen to me and shut me right off.  Didn't want to be told anything, unfortunately.  So now we wait until Sept. 29, her next rheumy visit.  Very frustrating,indeed!  She basically does not trust or like doctors, so for now we're stuck.  Maybe it will work out, hopefully.  Thanks for all of your help!       Elinor

    • EileenH
      EileenH Elijo

      Posted

      If that's the standard of manners she has experienced from her doctors I'm not surprised!

      Good luck.

    • Elijo
      Elijo EileenH

      Posted

      Amen!  (In all fairness he is very  kind to her, I'm just excess baggage in his office, but I will NOT give up!)

    • EileenH
      EileenH Elijo

      Posted

      I want something just a tad more than kindness...
  • donna60512
    donna60512 valdez

    Posted

    It was when I was at 15, down from 20 mg of prednisone that I decided to split my dose.  The very first day, I took 10 mg in the morning and 10 mg that eveing.  I was afriad to just go straight to the five in the evening.  From then on, I took 10 mg in the morning, and 5 mg in the eveing.  I did the same thing when I went down to 10 mg.  I was taking 5 mg in the morning and 5 mg in the eveing.  I am now working down to 7.5 mg.   So far so good.  I am using the method that was posted by Eileen whrere you take the old dose for six days, the new dose for one, new dose 5 days, old dose 1.  I am now at the three days of old dose, and then I will take the new dose.  So far so good.  I have been pain free through all of this.  I hjope this helps.  
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