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Short term goal of being on Prednisone

Posted , 13 users are following.

rocketman42
rocketman42

Hi All,

Aftere several years of sufferring I was finally diagnosed with PMR a few months ago. Rheumy placed me on 15 mg of Prednisone and miracuously I felt significantly better the next day.

I am the type of person who hates being on meds although I am on multiple other meds for other problems. Without having the advantage of guidance from this forum at the time, I intuitively wanted to taper off the Pred asap so after one week lowered my dose to 12.5 mg and was fine. Gave it another week and reduced to 10 mg and was OK. I once again tried to make a lower reduction to 9.5mg but had a flareup. 

1 like, 16 replies

16 Replies

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  • rocketman42
    rocketman42

    Posted

    hit the enter button too soon so the rest is to folllow so please wait to respond 

     

  • rocketman42
    rocketman42

    Posted

    I went back up to 10 mg and things were relatively good again. To experiment I went up to 11 mg for a few days and symptoms were slightly better at this level but not appreciably so.  My question pertains to what is the short term goal of being on the prednisone.....is it to be totally pain free or is it to be on the lowest dose that makes your symptoms tolerable ? To keep the dose as low as poossible I am operating under the latter theory for obvious reasons. Is this correct?   Also is the prednisione supposed to help with fatigue as I find although it helps with the aches, pains and stiffness it does not do a great job with the fatigue. Does handling the fatigue require a higher dosage or is it just not handled adequately by the prednisone ?  Thanks for you responses.
    • Handbrake
      Handbrake rocketman42

      Posted

      HI Scott, I think like you I tried a bit of both. My initial reduction was pretty quick until pain started creeping back so would up my dose 1mg at a time until I could be active. Activity levels were my benchmark once able to Carrie out household activities I would stay at this dose until no pain at all then slowly increase my activity levels if I could increase my activity at that dose without pain I would then drop a mg, sometimes it took days to drop other times weeks. I found my maintenance dose was 5 mg but look for the dose that keeps you moving( any movement is better than non at all. I'm currently off prednisolone and gradually increasing exercise levels to where I was before PMR symptoms. 
  • ptolemy
    ptolemy rocketman42

    Posted

    Under 10mg you really need to slow down your reduction. Say 1mg every couple of months. Sadly it is the PMR that causes the fatigue. You also get fatigue from the reduction of the pred around eight to seven mg as that is when the adrenal glands start to wake up again, until around that point the pred has been doing their work for them. Some people get rid of the pain completely, but you should get at least seventy per cent relief. You need to be on a dose where you feel comfortable. The majority of people will be taking pred for at least two years and many longer than that. You have done brilliantly in your reduction so far.
  • jeanne333
    jeanne333 rocketman42

    Posted

    You need to slow the drop down .. My RA put me on to fast a drop and I had a flare .. I'm now at 20mg and startng all over
    • rocketman42
      rocketman42 jeanne333

      Posted

      I found this forum several weeks after being diagnosed and starting prednisone. So after finding this forum and reading about PMR and how to taper I am now aware of how to do things. The reason I dropped so quickly at the start was because I was naive and didn't know better but luckily it worked out and I was able to get to 10mg without any problems.........My question, however, pertains to how to determine the right dosage to stick with before attempting to taper using the slow method. Should I be looking to maintain on a dosage that eliminates 99% of my symtoms at a higher dosage or is it better to be on a lower dosage that "only" eliminates 75% of symptoms but still allows me to function well on a daily basis?  I have elected to go with the second option since I prefer to be on a smaller dosage of prednisone for obvious reasons.
    • constance.de
      constance.de rocketman42

      Posted

      In four years I've never been 99% free of pain.  A long time ago I decided 75% was OK by me!

      Don't taper too quickly (.5 mg per month is recommended), if you do a flare is more likely.

      Fatigue is a nasty effect of PMR and also Pred.

      All the best!

  • paula63201
    paula63201 rocketman42

    Posted

    Hi Scott,

    I don't like drugs, either. Never had to be on them, but the Prednisone gave me back my life. After several months of undiagnosed suffering and fatigue, I started on 20 mg Prednisone at the beginning of December of 2013 and immediately felt like Superwoman. I had tons of energy and felt I could move mountains (both by Day and Night!!). I broke my shoulder in Febuary, but in March I was alternating 12 and 11 mg every other day and then stayed on 11 for several weeks and started to alternate 11 with 10 mgs in May. In June I started alternating 10 and 9, but experienced a weird skin eruption on my torso at the end of June. My internist had me go up to 20 for a couple of days and then over a week after I reduced gradually to 9 again. I was alternating 9/8 in September. In November 2014, I started using the Dead Slow method described on this site, as I reduced to 7 and then over a number of months down to 2 mg. Am currently reducing from 2 to 1 using the Dead Slow method. I have been fortunate in having no flare ups. I experience occasonal fatigue, once I am at the new level, but that goes away after a few days.

    I maintained a dose, when I was sick or had a cold or was in a stressful period of my life, such as leaving my job to retire and dealing with mountains of paperwork or Christmas, when I cook meals for my family of 15 and do all the Christmas shopping... For cataract surgery, I upped the dose on the day of and day after surgery and quickly got down to my then current dose.

    I would prefer to not be on Prednisone at all and can now see an end in sight. I have used a very slow method, to avoid possible flare ups and have been successful with it, so far. Unfortunately the disease is there and until it goes into remission, the job of the Prednisone is to keep down the damaging inflammation and the accompanying symptoms. You take the amount of prednisone that keeps your symptoms at bay. 

    Once I got my mobility back in December 2013, I was able to start Yoga again, with a setback of 7 weeks, when I was recovering from the shattered shoulder (slipped on black ice). I do yoga every day. I also row on the Concept II rowing machine and walk. The rheumatologist insists on exercise. I will be 70 this August.

    All the best to you! And keep posting about your progress! You will find people on this site enormously helpful and kind and interested.

     

     

  • paula63201
    paula63201 rocketman42

    Posted

    Is it better to control 75% of the symptoms or 99%? It is a good question and I am curious what others think, also.

    I think being in an inflammatory state is not good and brings other problems in the long run. Prednisone controls inflammation. I think if you have 75% symptoms, your inflammation is 75% controlled.

    Being 99% pain and symptom free was my goal. However, I did not have the side effects that Prednisone can cause. The blood values were slightly elevated, above my norm, but still within the acceptable range. Limiting salt, carbs, sugars and eating calcium rich food and generally maintaining a healthy lifestyle, getting enough rest, etc., has helped me with that, but it does not work for everyone. I might reconsider being 75% painfree, if I had suffered from the side effects. 

    • rocketman42
      rocketman42 paula63201

      Posted

      I am using the figure 99% too loosley....I should have used 90% at a higher dose vs 75% at a lower dose as a comparison. Since it is difficult to taper off the Prednisone ( along with potential side effects at higher doses) my theory was I am better off with being 75% at a relatively lower dose (10mg) and putting up with some tolerable aches and pains vs 90% at a higher dose (12-15mg. with fewer aches and pains.             Wanted to get feedback from those more experienced with PMR and prednisone as to whether they agree or disagree and why.                     Thanks
    • Tastyron
      Tastyron rocketman42

      Posted

      Hello Scott. I tend to use the 75% rule myself. I'm currently in the middle of a taper down to 12.5 mg where I will stay for a while to let my body catch up so to speak. I do get a bit more pain for about a week at each reduction but gets back to the normal range fairly quickly except once when I had a flare but a quick 5 mg boost seemed to get it in check pretty quick. 

      I would suggest keeping a diary to jot down small things like any exercise or heavy days like driving, gardening or drinking. Keep a log of your Pred intake and when you take them. I found this great to go back after my flair and see what contributed to it. Did too much exercise a week or so before dropping from 17.5 to 15, too big a drop really but did it slowly.

      You will get lots of good advice here.

      Best of luck. 

      Ron

       

    • ptolemy
      ptolemy rocketman42

      Posted

      I think where you have to be careful on putting up with extra pain is when the PMR raises its ugly head and bites you, this is of course more likely if you know you can be 90% pain free and are attempting to stick it out at lower doses of pred. Men do tend to be able to reduce more easily than women, although not always true, so it may work for you. 
    • Anhaga
      Anhaga rocketman42

      Posted

      I agree with you to a point.  I certainly put up with a little discomfort, really calling it pain is a misnomer, which I did not have when I was at a higher dose.  I think the jury might be out on whether it's a good thing or not to have a minor bit of inflammation hanging about.  My personal feeling is that I'd rather put up with that, and the possible disease ramifications of minor inflammation, that stay with the higher doses of prednisone where I was experiencing some relatively serious side effects (close to diabetic range of blood sugar, ditto glaucoma range of ocular pressure). These side effcts have apparently vanished with reduced dosage, and in no way am I in the kind of pain I suffered for months pre-diagnosis.
    • jeanne333
      jeanne333 Anhaga

      Posted

      It definitely is a personal choice and I think age plays a big part in that choice. I'm almost 75 and I choose to be as pain free, weaknes free, and fatique free as possible; I will worry about side effects of steroids, when they happen. You also need to know, that I have other health issues, that effect my decision: damaged heart muscle with 2 severe leaky valves, scarred lungs, end stage 4 kidney damage, thyroid and parathyroid damage.
  • Sheilamac_Fife
    Sheilamac_Fife rocketman42

    Posted

    Personally, I have aimed to be as pain free as possible, both for my comfort and freedom of movement and my assumption that this meant that the inflammation was being controlled. I took onboard the info on here that uncontrolled inflammation did lots of unseen damage, from heart disease to cancer. 

    I am one of the fortunate people for whom the Prednisolone pretty well removed all of the pain and stiffness. I've been on Steroids since July 2014 having become increasingly disabled, immobile and depressed for the previous 9 undiagnosed months. I didn't want ANY of that back again! I am currently reducing using the DSNS method from 5.5 to 5mg. 

    I have always suffered from the 'hitting the wall' fatigue but it got much worse when I was around 7.5mg. Presumably because my Adrenal system wasn't wakening up yet. This is slightly better now so I am hoping that they are getting their act together.

    i have had numerous side effects, some of which, notably the blurred vision, have thankfully gone now. Wish the fat and moon face would go....

    By the way, I was terrified of the steroids at the beginning and also wanted off them as soon as possible but was equally terrified of flares taking me back to the beginning!

    Good Luck in your journey!

     

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