To increase or not to increase my prednisone.

Posted , 10 users are following.

I'm sorry but this is going to be a long post. Because I'm going to have to give you a little background.

Okay when I started this journey I was at 10 mg of prednisone doing fine and then I got terribly sick and the doctor put me on 50 mg for three days then 30 mg for 3 days then dropped me back to 10 mg. During a part of this time I was in the hospital. By the time I was released from the hospital I was back down to my 10mg. I have now been on 10mg for a little over a week and the pain in my hands is extreme. Before I was diagnosed with PMR I had a lot of pain in my hands and when I started taking the prednisone the pain in my hands disappeared which is what leads me to believe this might be PMR related. But I also know that I have arthritis in my thumbs which can make my whole hand hurt. I wear thumb braces. I've been wearing those and putting arthritis cream on and those do help some. I don't know what to do at this point. I don't know if I should increase my prednisone dose and see what happens and if I do what do I increase it to? Or do I wait this out a little longer and see what happens? At the end of this week I will be due to drop a half a mg. Obviously I don't want to drop if I'm having pains. One other thing to think about is that my lower back which I already have a bad back has been lot worse than before on the pain medicine I take for it is not working as well as it has. That might be because of the PMR or it could be weather related. Because our barometric pressure has been high.

So there you have it. It's long and complicated and that's why I'm asking you all for help. Because right now I feel like a big ball of pain my hands and my back are the places where my pain is. I appreciate any input that you all have. Thank you

0 likes, 24 replies

24 Replies

  • Posted

    Amkoffee,

       I recently had a relapse of PMR (because I decreased prednisone  too fast). My rheumotologist put me on 10 mg of prednisone for two weeks. I had terrible pain  in my  right hand,  shoulders,  and hips...I wrote to her, told her 10 mg was not enough to combat pain and  I suggested we  up the prednison to 15mg per day. She agreed to one week on 15mg. per day  to see how I felt. It has been one week on 15 mg pred., I am feeling good, very little pain. I told her. She said to stay on the 15 mg of prednisone for ANOTHER week and then drop it to 10 mg. I have an appointment to see her then. We'll then decide what is the best dosage to keep the pain down....I hope you can find a docotr who Listens to YOU and responds to YOUR needs.....if not, find another doctor!!

    • Posted

      Jean, oh dear, that 5 mg drop is more than likely to land you back in the same place you were in before the increase.  I think you should drop by no more than 1 mg, possibly every few days, or once a week, depending how you feel.  Last thing you want is to yoyo, which is likely to cause you to have a higher total lifetime dose of pred.
    • Posted

      true.....that's why I probably will suggest to my rheumotologist that we go to 13mg instead of 10 and from there see what happens...luckily, she is open to  suggestions

    • Posted

      That would still be too fast for many. The guide from top experts fot reducing the dose in a TAPER, not reducing to zero, iis not more than 10% of the current dose. Which is 1.5mg at 15mg, falling to 1mg by you get to 10mg. It isn't a race to lower the dose, it is a means of finding the right dose for YOU and YOUR symptoms, not for MrsI'mon5mgaday who lives across the street. And it isn't slow when it works and you don't have to keep going to a higher dose to manage the pain.

  • Posted

    Have you found that something else has helped that pain?  I find I feel better all over if I've taken aspirin for headache (always very careful not to dose too close to pred). I do have osteoarthritis, but it doesn't bother me much, nothing like what you're experiencing.  If you do find it helps, perhaps it is the arthritis.  

  • Posted

    Amkoffee,

       I am on my second journey with pmr and I believe that if the prednisone dose does not relieve the pain you need to increase it. When the prednisone is right you should not be in  pain. I believe that the problems caused by prednisone are nothing compared to the pain and disomfort caused by pmr.,

    • Posted

      I totally agree.....the CRP can be "normal" but you can still be in pain....increase the prednisone to a "comfort" time  as you were BEFORE PMR

    • Posted

      Not everyone is totally pain free on any dose - you have to bear that in mind. You have to look at the sort of level of pain relief you get at a typical PMR dose of 20, max 25mg. Pain remaining after that is probably something other than direct PMR. Some may go after a few months, especially bursitis, and that might also respond better to a steroid injection. But you can't expect 100% freedom from pain.

  • Posted

    I suffered exactly the same pains etc after being diagnosed with PMR . I couldn't do up my bra, or pull my nickers up after going to the toilet. I was prescribed Lyrica, and after about 6 weeks the pain went away and hasn't returned. I was initially prescribed 15mg of Pred and now down to 8mg, and decreasing at 1/2 a mg every 15 day...= 1mg per month smile

    • Posted

      Do you really think the Lyruca helped with the PMR? My dr first thought I had fibromyalgia and Lyrica didn't do anything for me. Only predisone has helped.

      Good luck!

  • Posted

    If you are in pain, you should not lower the pred. Right now it seems that you need a little bit more. A stay in a hospital is always stressful too. I would try 13 or 15 mg for a few days and when you feel better, start lowering, but only 1mg. Have you tried tumeric? I take it every evening before I go to bed and feel better.
  • Posted

    Do you know what dose relieved the hand pain? There is no reason you can't take a higher dose for a few days to see if it helps and then decide what to do. But if going to 15mg and hen reducing slowly works - do it.

  • Posted

    Hi there,

    I feel your confusion. I too am suffering with extreme hand pain, especially the joints on the thumb & a few fingers of one hand which can also be osteoarthritis but not sure. Its so difficult to distinguish where the pain is coming from.

    I have been at 5 mil for almost two months but today went to 6 mil because my internist said sometimes one mil can make a difference but who knows for sure.

    My back and shoulders are killing me as well and if I need to increase a mil every day I will until I can reach a comfortable stage and stay with that dose for a while.

    Maybe you too can try to increase the dose a little at a time until the pain is tolerable, no use suffering. I know when I was at the 10 mil I was able to function with minimal pain and it has taken me so long to get this low but I have no choice, I cannot imagine dropping down to 4mil and getting worse.

    I wish you luck and let us know how you are doing.

    Sharon

    • Posted

      If you have back and shoulder problems and painful hands they COULD all be linked. If you have tight muscles they can cause the nerves to the arms to be trapped or irritated. Perhaps a physio or massage therapist could assess the state of your back and shoulder muscles? Something called myofascial pain syndrome is caused by the same inflammatory substances as PMR except they are concentrated in small areas of hardened inflamed muscle fibres  - and that is what causes the problems.
    • Posted

      I finally had to get with my rheumatologist. She's pretty good. She suggested I go up to 12 mg (I'm at 10 mg now) for one week then down to 11mg then back to 10 mg after another week. So I think I'm going to give that a try. I'm hoping that, that works. It just kills me because it took me four tries to get under 11 mg. And now here I am back again.

    • Posted

      When it takes so many attempts to get down a dose - it usually means you really are on the borderline of enough/not enough. And even a tiny bit too little will let the inflammation back up again...
    • Posted

      Yeah I'm starting to get to that point where I realize I am meant to be at 11 mg and not any lower. I'm just hoping my rheumatologist can accept that

    • Posted

      As I keep saying - some people only absorb 50% of the pred so it stands to reason they need a higher dose than the ones who absorb 90%! But the doctors are taught the bioavailability of pred is 70% - the average. Really not quite the same is it!!!
    • Posted

      Very interesting statistic but how can one know what your pred absorption percentage is?  I would guess that persons who are only absorbing 50% are most likely to be the ones that need to split their doses morning/evening.  Otherwise the single morning dose of pred won't do the job for a full 24 hours because they haven't gotten the full dose because of poor absorption?  Or am I misunderstanding.

      My rheumy is pretty good but even he needs to be "guided" a bit each time I see him. (He is leaving in 45 days though - darn) At the last appointment I had, I purposely appeared to have thought out loud wondering if it might be a good idea to try splitting the dose again but keeping the mg level steady for now.  Amazing - 2 minutes later the rheumy said that's what we should do! LOL!  Since then it's been 13 days pain free and virtually inflammation free too.  I will be reducing in another 17 days but I've learned here about not being in a rush.  If the rheumy were to try to reduce me too quickly I would just say no.  

      I think the exchange of information about PMR on this forum is SO important and useful.  I hate to think how many of us would be suffering needlessly or getting improper treatment without the info shared here.   Knowledge is power as they say and what we learn from these conversations here is probably more important than what we learn from the doctors in my humble opinion.

    • Posted

      We can't know - it is based on pharmaceutical studies where they will have measured the plasma level after people took a given dose. That is the reason they titrate the dose - you start with a dose that should work for everyone and then reduce stepwise to find the lowest oral dose that works. In other drugs where the bioavailability varies from person to person they may start with a low dose, see what happens and then add to the dose. An example of that is warfarin for anticoagulation. Either way, you take the dose that works for you.

      No - how long the antiinflammatory effect lasts is a different pharmaceutical property I think. It lasts for 12 to 36 hours depending on the person. So you could only absorb 50%, but find your right dose and still go 24 hours or more. 

    • Posted

      Thanks Eileen, that helped clarify things.  I had a feeling that measuring absorption wasn't just another standard test result from the doctors office blood draw.

      My thought on absorption and dose splitting sounded good - but was wrong lol.  I guess if it was that simple we would be tested for absorption and not do trial and error dosing.

    • Posted

      No, no - not trial and error wink

      It is a recognised technique and called titration! Did you do chemistry at school?

    • Posted

      I think I was enrolled in boy/girl chemistry.  Regular chemistry class?  I must have - I remember the lab catching fire.   redface
    • Posted

      It wasn't you that caused it though I hope wink

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