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Steroid reduction side effects

Posted , 12 users are following.

julia85224
julia85224

Hi all,

I have recently been diagnosed with PMR, and had great support from this forum.

I have reduced from 15-12.5 at the second attempt.

Reduced fro 12.5 - 10 on Sunday, felt cry tired and today very dizzy, felt sick etc.

Is this do you think to steroid reduction.

Any advice would be appreciated.

Not coping very well with this illness.

Thank you

0 likes, 40 replies

40 Replies

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  • shawn99
    shawn99 julia85224

    Posted

    Hi Julia,

    I had similar reactions when I treid to reduce too much and too quickly.

    As everyone is different, I can't say for sure that your problems are due to the reduction of Prednisone.

    I would suggest getting some bloodwork done to see if any of the indicators have risen significantly.

    Personally, I think you have dropped the dose too much at once...only my opinion.

    I had to drop the dose no faster than 1mg per month when I was at 15mg, otherwise I had a flare-up. Then once at 10mg, reduced it even more slowly.

    Good luck and remember that pretty much everyone will tell you to reduce very, very slowly, which makes it so frustrating.

    Shawn

    • julia85224
      julia85224 shawn99

      Posted

      Hi,

      Thank you for you're reply.

      Thankfully my next reduction is in 6 weeks down to 9, and only hope it is easier than this.

      My bloods are always normal and this I think is why my diagnosis took so long.

      Not very good at this " slow" thingy, inpatient by nature and have been lucky enough to have lots of stamina, not at the moment.

      Has to get better, ever the optimist.

      Hope you are ok.

  • helen88071
    helen88071 julia85224

    Posted

    Hi Julia, I got some 1mg pills and they have helped with the reductions.  I had got down to 6mg when a flare sent me back to 20....am now on 13mg....it is a game, but I will keep plugging away at it. Good Luck...Helen
    • julia85224
      julia85224 helen88071

      Posted

      Hi,

      Thank you for you're reply

      It does feel like 3 steps forward and 6 back, Keep at it.

      Wish you well.

  • Oregonjohn-UK
    Oregonjohn-UK julia85224

    Posted

     Can I suggest that you have been advised by your MD/GP to reduce far too quickly and at a to large a drop.  There is a recommendation that you reduce by no more than 10% (e.g. at 15 mg that would be 1.5 mg NOT 2.5 mg!!)  It's also well worth reducing a lot slower e.g. First week -1 day new dose 5/6 days old dose, second week 2 days new and 4/5 old etc.  If you find it too much you can always stop for a short time and then continue the reduction.  It's also worth noting to leave a time period after reaching your new dose every day so stick there for at least a week before attempting another reduction.

    It's not a race to get to zero as quick as possible as you are more than likely to have PMR for at least 2/3 years (sorry!!), and if you go to low too quick you will no dought have to start all over again, and in the long run take even more steroids.  There is a mantra Remember the tortoise and the hare?

    Best of luck, John

     

    • julia85224
      julia85224 Oregonjohn-UK

      Posted

      B,

      Thank you for you're reply.

      My consultant has impressed on me to get down to 10mg, so I have tried this reduction.

      At least I am on this dose for 6 weeks then reduce to 9.

      The tortoise you mention is quicker Thank I am at the moment.

      Hope you are well.

  • tavidu
    tavidu julia85224

    Posted

    Hi Julia. All I can say is that you are reducing far to quickly. Try reducing by 0.5mg a monthigh or even less once below 10mg.
    • julia85224
      julia85224 tavidu

      Posted

      Hi,

      Thank you for you're reply.

      I am so new to all this, I just thought I must follow what the Dr instructed, as I have felt ok since started reduction on Sunday, albeit moving slow, today took me by surprise, felt fine when I got up, tired so went back to bed, dizzy, and unwell rest of the day.

      I so hate this, like us all no doubt.

      Hope you are well

    • paula63201
      paula63201 julia85224

      Posted

      Hi Julia,

      I agree with John and David on the 'no more than 10%" reduction scheme and cutting 1 mg tablets in half.

      To get from 20 to 15 mg, I by 5 mg increments as the Rheumy recommended. After 15 mg, I alternated doses 15/14/15/14 mg for about 6 weeks and then stuck at 14 mg for 6 weeks or soOnce I got to 8, I cut the 1 mg tablets in half and alternated 8/7.5/8/7.5 for 6 weeks and then held on to 7.5 for a month, before lowering to 7 by alternating 7.5-7, 7.5-7, etc. I continued this slow method, more or less 6 week method until I got to 5 mg, when I started to use the Dead Slow method described in the link above. Right now, I am lowering from 2 to 1.5 mg using the Dead Slow method. Thus far, and very luckily, I have not had a flare or any pain or weakness at all. I do feel more tired than I did at higher doses and I do live in fear of a flare or GCA.

      I got PMR in September 2013, was diagnosed in December 2013 and started on 20 mg and have been steadily and slowly reducing ever since.  I would go slower if I was sick for any reason, or had surgery, or had a massive allergic reaction to something undisclosed (60 MG for this). I basically ignored my Rheumatologist's urging to drop any faster and I think I did the right thing.

      I was fortunate that Prednisone did not give me a lot of side effects, except for feeling really high (miss that high!!), when I started on 20 mg, and getting thin skin and hair falling out for a while (don't miss that!), accelerated cataracts (had those fixed). The BP, blood sugar and cholesterol got slightly elevated, but still within the normal range. I did not gain weight. Had I had more side effects, I might have been trying to reduce at a faster rate. 

      I will be 70 in August. 

      Unfortunately, in the case of PMR, reducing Prednisone slowly is the way to go. Yo-yo-ing doses from low to high and then down again is not a good idea.

      Good luck!!!

      Paula

  • kathy67492
    kathy67492 julia85224

    Posted

    Oh, the dangers of such a big reduction! It takes me weeks usually to recover from too big of a taper. I would go slower...much slower.

    It is a long journey...prednisone is our friend, whether you like it or not😊

    • julia85224
      julia85224 kathy67492

      Posted

      Hi,

      I am sure you are right,

      just doesn't seem very friendly at the moment.

      Hope you are ok.

  • Anhaga
    Anhaga julia85224

    Posted

    It seems that most people go with a reduction from 15 to 12.5 mg and make it "slow" by staying at that dose for several weeks.  My doctor told me to reduce by 1 mg per week.  This I did and was fine until I tried to reduce to 9 mg.  I went back to 10, stayed there a couple or three weeks, then started the dead slow nearly stop reduction.  Therefore I would say it's kinder to the body to reduce by 1 mg every week or so for four or five weeks, and it gets you there in the same amount of time as the bigger steps with far less risk of a flare and then being trapped in a yoyo situation. 

    I showed a copy of DSNS to my doctor and she was fine with my trying it.  Since starting pred in June last year at 15 mg, I'm now at 3.5 mg.   Remember, "It isn't slow if it works".

    • julia85224
      julia85224 Anhaga

      Posted

      Hi,

      Hope you are well,

      I must sound like a broken record, I had the same horrid symptoms when I reduced from 15-12.5.

      I had hoped the 12.5-10 was going to be easier.

    • Anhaga
      Anhaga julia85224

      Posted

      I am well, thank you, and I must be honest that I've had very few problems since starting DSNS.  I monitor myself very carefully and have sometimes slowed down the taper even more, but for the most part it's gone well.  Little hiccups at the usual places, 10, 7 and 5, but nothing crippling, and at my current level must say I feel better than I have for some time.  Of course I've done a lot more to improve my general health, not just relying on pred, so that probably hasn't hurt!

    • julia85224
      julia85224 Anhaga

      Posted

      I am glad you are well and I think I will definitely speak to my Dr about a slower reduction.

      Must be worth a try to avoid feeling like this and it literally knocking me off my feet.

      All will be good

    • karen81902
      karen81902 Anhaga

      Posted

      I am sure you already told me but what else are you doing  Lots to take in.  I feel that I will never feel like me again.  My spunk and spirit are gone.
    • Anhaga
      Anhaga karen81902

      Posted

      Diet (already ate well, but cut most wheat and grain-based carbs generally, reduced sugar to virtually nil, upped my protein a bit - I'm vegetarian so now eat lots of nuts - that sort of thing, plus trying to find optimum supplements to combat bone thinning but that seems to be a moving target) exercise, avoiding stenuous and repetitive exercise, walking, tai chi, Nordic walking, yoga, physio.  Actively avoiding stress.  And low level light therapy, google those words plus toronto and you should find it.  

    • joey_12298
      joey_12298 julia85224

      Posted

      Julia - Forgot to tell you to stay on 15mg for a month to make sure you do not get a flare again.  Then start the slow reduction I mentioned earlier. That reduction schedule was posted on this site before & has worked wonders for us all! Good Luck 

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