trying again

Posted , 8 users are following.

After trying to taper from 20mg. of Pred. to 17.5mg. to 15mg.after being on the original 20mg. for 18weeks, I had a bit of a disaster. I then went back up to 20mg. for 10weeks, while I had tests for various things done,as my bloods never fall to what they should. The Rheum. says I should now try again which I am being on 17.5mg. since the 10March, almost immediately I had aching legs, constant fatigue, and now have a swollen foot which goes down overnight, but comes back during the day.(I have had my blood pressure tablet changed, so the foot could be the result of that) I am determined to persevere, as I think I gave in too easily before. I'm just not sure ifit is withdrawal or not, anybody know?

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18 Replies

  • Posted

    I have only ever tapered 1mg at a time. When I first started decreasing from 20mg I think my doctor advised a  2.5 drop but I felt it wuld be too much for me and stuck with a 1mg reduction which was fine.

    Any chance you could go back up a little then come down more slowly?

  • Posted

    This time I really would suggest trying just 1mg at a time - 2.5mg is simply too much at one go for many people. No reduction when tapering should be more than 10% of the current dose - and 2.5mg is. If your symptoms appeared immediately it could be steroid withdrawal problems which should improve as you stay longer at that dose. If it is the symptoms flaring because the dose is too low then that usually takes a bit longer to appear and then steadily gets worse. Being on 20mg as a starting dose for 18 weeks is really quite a long time but I assume it was to see if your markers would go down?

    The fatigue won't respond to the pred, all it does is manage the inflammation that causes the other symptoms. The fatigue you must manage by pacing and resting appropriately. You will find a link to info about pacing at the end of this post:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    and in the replies section you will find a slow reduction approach that has worked for many people on the forums. It is being used in a clinical study in the north of England.

    • Posted

      The reason that I was on 20mg. is that I was referred to a Haematologist for high white blood cells and Platelets, who said I shoulld have a Bone Marrow test, so I was kept on the dose so long to have all this done, it was o.k. so back to the Rheum. who said I should cut to 17.5 for a month, then 15mg for another month, I told her that it didn't work last time, but she said I should give it another try, my markers are still too high, but here goes. Thank you for your reply.

  • Posted

    For me a flair of PMR or GCA is mostly as it was when I first came down with them: shoulders, neck and jaw,head..  But, I can say that other areas that had been inflamed will raise their little heads in memory.  What a mystery it all is.  Keep a record of everything.  Taper that slow, slow way Eileen gave us. My husband writes down what I take everyday and it is interesting to look back.   Try really hard to get below 7 Mg.  Good luck
  • Posted

    Everyone is different and many of us do not follow the standard response to an initial dose of 15 mg, then decrease.  I needed 25 mg to get control of my symptoms for almost 4 months.  Then I was able to do the slow decrease (2.5 mg at first, then 1 mg).  Luckily my doctor accepted this and allowed me to adjust the dose according to my symptoms.   

    It is not really a question of "giving in."  If the symptoms return when I decrease the dose, I give it a few days.  If things get worse, I go back to the higher dose. If this is what your body needs now, that is what your body needs.  It is not the sign of a weak character!   

    Of course we want to reduce the prednisone as fast as is compatible with controlling the inflamation. But reducing the dose too quickly just results in chronic inflammation and unnecessary pain. I don't think you can bully the inflammation into going away by force of will! 

  • Posted

    Hi, I was on 40mg, then got to 37mg and had to sit there for awhile while I had a operation and radiation. Then saw Rhuemy for the 1st time and he said to start tapering at 2.5 mg a week over 6 weeks, then slow down: I did the 1st 2.5 for a week and never again: I took Eileens advice and then tapered at 1mg at a time, sat on it until I felt comfortable, then dropped another 1 mg, usually over 2 to 3 weeks at a time. My body was telling me when it was right, I even went back up a few times, waited that extra week and then tried again and was fine. I believe what Eileen and the others say, slower the better: I'm now on 21mg a day and doing great with my tapering:  We are all different with Preds, this is just my experience and opinion : Good Luck

  • Posted

    When I tried to go from 20 to 17.5 I wasn't prepared for the results.  I complained of more pain, which wasn't really bad in hindsight.  I also thought that I should have toughed it out longer.  My rheumy switched me to .5mg a week.  It worked well for me.  I got to 15 easily on that schedule.

    Now I've tapered from 15 to 14, having switched to DR Pred, can't split the pill though I could split the dose I suppose.  I feel more reaction to the lower dose with the 1mg taper.  But I can't tell whether it is because I'm at a lower dose or just because it was a 1mg taper instead of .5.  I'm at night 6 of the taper.  Tomorrow will be day 6.  We shall see what it is like.  

    I have already begun to ask what is the cardinal symptom that my body either needs more than what I'm taking or that I reduced too quickly for me.  Wisdom of Solomon anyone?

    • Posted

      Too big a drop in dose at one time results in immediate pain due to steroid withdrawal which then improves over several days. If you have overshot the dose you need then you will get a return of the PMR symptoms bit by bit. 

      Many of us use the DSNS approach:

      https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

      where you are asking your body to accept the new dose just one day at a time and then going back to the old dose where you were happy. Most of us find after the first 3 times of trying the new dose our bodies object a bit but then accepts it is OK.

       

    • Posted

      I have been on 17.5mg. for just over 3wks. now, I have aching in my leg which goes if I take a paracetamol, so that's o.k., other wise a bit of breathlessness, and fatigue, which as explained has nothing to do with Pred. how things will be when I drop another 2.5mg. in another two weeks remains to be seen!

       

    • Posted

      Thanks, so much. I have many of your posts copied and pasted into my Google Drive.   

      I actually proposed the DSNS method but my Rheymy is concerned about my total GC load.  I thought going from 15-14 I might give it a try decreaseing by 1mg.  Today is day 6 I woke fine,  better than yesterday, but a little emergency at my daughter's house reminds me how easy it is to get depeleted fast when tapering even from a fairly high dose.  Still I am encouraged that today seemed a bit better than yesterday, especially in my right bicep which is painfree today.  It has been my most consistent source of pain.  Now the fatigue in my quads and calves??....another story, not there at the beginning of PMR for me....comes and goes. Funny thing, doesn't interfere with climbing stairs.  Could just be my lower back issues which have been quiet for a while.

    • Posted

      I thought I read here that I would "know" if I went to low too fast  between day 5-7, but I guess the bit by bit can take a bit longer. smile

      If my condition hadn't improved this morning, I would have added 1mg IR Pred. at breakfast, despite what I had been advised.  Actually at any time, at this stage of the taper, that will be my strategy.  Go back to the previous level using IR Pred in the morning if I feel a flare coming on.  

      If/when I get to lower doses I intend to make a strong case for the DSNS approach.  

      Does this make sense?  

    • Posted

      "my Rheymy is concerned about my total GC load"

      I wonder what he would say about me then? Some 8 years of pred, quite a bit of it at over 10mg - and quite a lot of it because of going ablout reducing the wrong way. The rheumies who are using it aren't worried about total steroid load - they are more interested in the fact it allows patients to reduce steadily without flares - because as soon as a patient develops a flare and has to go back up all the faster reduction was wasted. Plus the patients feel better and more in control. Always a good thing.

      Good luck with getting past the steroid withdrawal!

    • Posted

      Time scales vary - everyone is different. If you have overshot and are developing a flare there are so many variables you can't give any idea of "how long?". Is the underlying autoimmune activity very or only slightly active? Were you already at the borderline and the dose low enough to allow a drip drip of inflammation? Are there any other factors at work? Etc etc.

    • Posted

      I hope the 14 mg dose works out for you.  If not, you might want to go up to 15 for a few days to regain any ground you have lost. When you feel you have stabilized at a dose that worked for you, since you cannot split the pill, you could try alternate days of 14 and 15 mg for your next reduction. Best of luck!
    • Posted

      Thank you for helping me steay steady and patient with this process.  I awoke this morning feeling so much better.  Day 6 of 14, so I guess it will be ok for now.  Tomorrow will bring what it brings.  Don't know what I'd do without you.  

    • Posted

      I really thought I was going to be heading back up when I went to bed last night, but to my surprise today was much better.  The pain in my right bicep almost entirely gone.  Go figure.  Thank you for your guidance and good wishes.  
    • Posted

      Steroid withdrawal rheumatism can appear with even a small reduction - hence our emphasis on SLOW and SMALL. But is it also possible you overdid it doing something with that arm perhaps?
    • Posted

      That right arm bicep was the most intensive pain I had, into the shoulder.  Actually the PMR started two weeks before it really hit with pain in my right shoulder. the bicep pain has been my most recurrent pain also.  But not such a bad pain.  In this case, I think some exercise/stretching helped.  we'll see how it continues.  I do have a history of doing something that feels easy at the time only to suffer consequences later.  That goes  back way before PMR. Probably linked to the myofascial tendencies I've mentioned.

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