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PMR - splitting the dose of prednisone

Posted , 8 users are following.

donna60512
donna60512

I was diagnosed with PMR just a couple of months ago.  I have been on 20 mg of prednisone and 15 mg of methotrexate once per week and the following day leucovorin (folic acid)  I have not been pain free at all until today.  I had been taking the prednisone with breakfast.  Every morning I havef been in terrible pain in my shoulders and my writst.  Yesterday I needed both hands to get my coffee mug to my mouth.  I decide enoug is enough.  So at dinner I went ahead and too a 10 mg tab.  I woke up this monring with absolutely no pain!!!!  I took 10 mg at breakfast and plan to take theother 10 at dinner.  I realize that I dosed myself with 30 mg yesterday.  It is now nearly 2:30 in the afternoon and I am still pain free.  I have accomplished more today than I have in the past several weeks including a very long walk.  Am I delusional due to the fact that I had 30 mg yesterday, or is this new plan apt to work????  When I begin reducing, based upon what many of you have written, I will take the lower dose with dinner.  I am in the U.S. and most doctors here want you to go down by 5 mg at a time.  Since I have not been on the meds for more than two months, maybe that will work for me.  Any suggestions???  I do not see my rheumatologist until the 7th of August.  He wanted me to start reducing before then.  I will have enough meds to stay on the 20 mg until then.  I am thining that if this new routine of dosing twice instead of once, I may start tapering in a week or so.  I know womd of you mentioned middle of the ngiht dosing and such.  I know this will not work for me.  I have restless leg syndrome and would never get back to sleep.  Also I need to take the proton inhibitor within the hour of the prednisone, so my plan for breakfast and dinner seems best for me.  I could take the last dose with some yogurt before going to bed if that would be recommended.  Thanks for any help you can give me.  I really appreciate all of the good into that I receive on here from so many of you who have suffered for so long. My best wishes to all of you. Donna

0 likes, 35 replies

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  • eleonora107
    eleonora107 donna60512

    Posted

    Hi Donna,

    I was without pain on 20 mg, but US doctors want to reduse prednisone as soon as possible due to the side effects from it. (I feel that my face is swell and my body is burning from time to time as well). Most medications have lots of side effects unfortunatly.

    Now my doc wants to start a new treatment with remicade (biologic) to avoid long term damage to the effected joints.

    Be carefull with prednisone, try to reduce and take tylenol if you can.

    My best wishes to all.

    Eleonora.

     

    • erika59785
      erika59785 eleonora107

      Posted

      Yes, I take Tylenol for pain and reduce 0.5 mg a month.  I know US doctors want to reduce asap. but it does not work well.

      This forum has helped me a great deal.

      I was on 30 mg  almost 2 years ago after PMR diagnosis.  I am now on 7 1/2 mg.

    • donna60512
      donna60512 eleonora107

      Posted

      Hi Eleonora,  Thank you for your suggestion.  I agree that I do not want the side effects.  So far I have maintained my normal weight and have not had the effects in my face.  My mother was on prednisone before she died and I hardly recognized her.  She had total kidney failure so I am thinking it was needed.  That was my first thought when I went on the stuff, I do not want that moon face.  I have really been watching what I eat, counting calories, and just eating healthy as I do not want the weight gain.  I am also on Methotrexate once a week.  I think I will try reducing by 5 mg in a couple of weeks.  I see my rheumatologist in five weeks.  I will discuss with him about lowering the dose more gradually, but I really want off of it as soon as possible.  I do take Tylenol Arthritis as that is what the doctor recommended.  He did not want me taking Ibuprofen as he felt that was not a good mix for my other meds and low dose aspirin.  Today I have needed nothing.  I am trying to think very positively toward tomorrow.  I think this split dose will be the answer.  It was wonderful waking up this morning with no pain.  Thank you for writing.  I hope you are well very soon.

      Donna

    • donna60512
      donna60512 erika59785

      Posted

      You have suffered for a long time.  30 mg was a lot to begin with.  Glad you are down to 7.5 now.  Wishing you luck in getting down to zero.  Donna
    • Anhaga
      Anhaga eleonora107

      Posted

      I will private message you a link to drug side effects.
    • donna60512
      donna60512 Anhaga

      Posted

      Thanks, I dont' know how to PM on here.  I guess I need to explore that. Donna

    • Anhaga
      Anhaga donna60512

      Posted

      oops, sorry Donna, the pm was to Eleonora about side effects of Remicade.  For your information, however, you should see a little envelope below the name of the person you want to PM, and if you click on that you can send them a message.  We can't post most external links, nor mention certain treatments on this site, it's very closely moderated, but we can private message that kind of information.  

  • erika59785
    erika59785 donna60512

    Posted

    I would split the dose.  I have been doing this for a long time.  It works better for me, especially at night and I do not wake up with pain in the morning.

    US Rheumatologists go by the book........5 mg reduction is way too much! I live in the US.  I tried this myself, and it did not work.  I am reducing by 0.5 mg a month because I am below 10 mg of prednisone.

    I am sure another fellow sufferer can give you more detailed guidance.

     

    • donna60512
      donna60512 erika59785

      Posted

      Thank you so much.  It is nearly 4:30 in the afrernoon now, I am in Californka.  I am still pain free.  :-)  I will have dinner in about an hour and take the other 10 mg then.  I may try to reduce by 5 in a couple of weeks and see how it goes.  I will be very afraid once I get to 10 mg though.  I will discuss this with the rheumatologist when I go in August.  If the 5 down to 15 goes well, then I might ask he would allow me to go down by 1 mg for the dinner dose and stay at 10 in the morning.  I cannot believe that I have been pain free all day.  I feel like celbrating.  I do realize that yesterday I had a higher dose adding that dinner time pill, so may be in for a shock, but sure feel good now. Thanks, Erika.    

      Donna

  • jeannae68307
    jeannae68307 donna60512

    Posted

    Donna,

    Two things.  I have done the split dose and it worked for me.  I absolutely would not go up to 30 without your doctor's approval on a number of different levels.  It will skew the numbers when your doc does your sed rate and crp because your last levels were likely based on the dose he prescribed.  Also,  the lowest dose to control the pain is where you want to be.  I added Manuka honey, tart cherries, clean green diet, folic acid and a good multi ( Vicon Forte) has folic acid in it.  I eliminated all diet soda and caffeine.  I did oatmeal (hate it) with my morning pred and did Fage unsweetened yogurt ( not too much sugar) .  Switched to taking my Prevacid at night and it worked better.  Finally gave up the Prevacid and cleared the burning gut with 1/2 teaspoon Manuka honey twice a day.  Amazing.  Check it out.

    i can't warn you enough to be so careful with those higher doses.  The hospital upped me and I now have to deal with adrenal insufficiency which is scarier than PMR because you can go into adrenal crisis.

    i eliminated sugar.  That remains tough and I struggle with it but try to get mine from berries.  The tart dark cherries have done as much for decreasing inflammation as anything I have done.  I am not saying en lieu of but as an adjunct to the pred.

    last thing:  keep track of how long it takes from your am dose to when you get some pain relief.  If it doesn't kick in for three or six hours you may want to discuss dosing times with your doc.  I had to take my dose at 4 am so I could move my 10'am.  Finally switched from prednisone to prednisolone and it kicked in much quicker.

    Hope one of these things might give you some relief.  It's tough.  Holding good thoughts for you.

    • donna60512
      donna60512 jeannae68307

      Posted

      I woudl not go up to 30 mg.  Yesterday I had taken my usual 20 mg with breakfast.  When I started thinking about really wanting to split the dose, I was wondering how to do it.   I have been in horrible pain for several hours every monring, never had a pain free day, so I didn't want to just begin today with 10 knowing that I would be in so much pain.  So, I did what I thought I had to do.  I went ahead and too the 10 mg with my dinner.  I woke up pain free for the first time ever since the diagnosis.  I took the 10 this morning and will take 10 with dinner. So yesterday was the only day with 30.  I would never do that again.  I just felt it was the only way to switch over to the split dose.  I do not know why the doctors don't start people on a split dose.  I may have pain tomorrow, not sure.  My diet is very healthy.  I have never cosumed diet sodas, I try to stay away from processed foods.  I do have a latte with non-fat milk in the morning.  I put 1/2 tsp raw sugar in that.  This is my total pleasure.  I have given up so much.  If I found that this was causing the PMR, I might be willing to give it up, but all in all I am a health food nut, so pretty much not willing to get rid of my latte.  I am a widow, I live alone (with my dog) and don't get out a lot, so my latte is my mornign friend.  LOL  I have always walked a lot.  Today was amazing that I felt so good that I took a long walk first thing.  It is very hot where I live, so walking need to be done early.  My morning pains have really gotten in the way of this.  I am sure that my one day on 30 mg will not change my blood tests as I am not even being tested for four weeks.  I go back to my rheumatologist in 5 weeks.  I am hoping to be at 15 mg by then, 10 in the morning and 5 with dinner.  I'll see if I can do that.  I am going to try to stay at the 20 for ten days to two weeks.  Thanks for all of your information.  I do appreciate it.  You are doing a great job with your dietary needs.  Congratulations on that.  Thanks, Donna

    • Anhaga
      Anhaga donna60512

      Posted

      We don't all need split doses, I don't for example, and if you can manage with one then that is most convenient.  But so many people thrive with the split dose it is a great pity doctors don't mention the possibility quite early on to patients who are struggling.  I'm glad this is working for you.  confused

    • donna60512
      donna60512 Anhaga

      Posted

      Thanks.  It may be a bit different tomorrow since I had an extra dose yesterday which I would not do again.  It was the only way I thought I could begin.  I am still in awe of the fact that I have had no pain now for about 32 hours.   Sure hoping to wake up pain free again.  I will then feel like I can start reducing in a couple of weeks.  I sure appreciate the help here.  Donna

    • maid_mariane
      maid_mariane donna60512

      Posted

      Hi Donna

      I stsryed at 20mg and within the week i needed to split the dose to control afternoon pain.

      I would take morning dose anywhere from 5-6:30a.m. 15mg and 3:00pm 5mg

      When i reduce i leave the 5mg as is and lower the morning dose.

    • donna60512
      donna60512 maid_mariane

      Posted

      My pain has been primarily i the morning, by afternoon I feel better.  So far so good with the 10 in the morning and 10 at night.  When I cut back, I think I will do 10 in the morning and 5 at dinner.  I want to wait a couple of weeks before attempting to cut back.  I have only been on prednisone since 

      April, so am hoping that I can cut it before I have too many side effects, but form what I am reading, I will be prepared for flare ups.  I appreciate getting all of the counseling from those in the know who have been through thsi for a while.  Thanks, Donna

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