Trying to reduce prednisalone

Posted , 9 users are following.

Can someone advise please .Dropped from 13mg pred Tuesday to 12 mg .woke early hours this morning with bad pad pain in neck which had now spread into right shoulder . Before diagnoses PMR after pain on other side 3months ago I have had pain on and of on right side for years .This went altogether after starting preds . But now back with avengance . Would dropping one mg of pred react so quickly .While coming down from 15mg over every 6 weeks or so have a little pain after a week or so and upped for a few days then dropped again but have never had it happen so quickly . Due blood test next week and doctor 2 days later but should I go back up to 13 mg or hang in there at 12 mg . Co Codamol doesn't seem to do much for me . Elaine ?

1 like, 19 replies

19 Replies

  • Posted

    Hi Carol, sorry you are having such a time of it.  I am relatively new here but someone will be along soon to advise and support you and give you information.  They are a great bunch of people in this forum and they will keep you right.  Hang on in there and good luck.    Pat
  • Posted

    Morning carol, what a bugger! This is just what I did. Last October I dropped from 9 to 8 and by the second day I knew that things weren't right. As you said the first ugly pain to reappear was the pain in my neck that spread to my right shoulder, then the pain in my hips and upper arms. I gave the pain a good 14 days to see if it would go but it didn't so I upped it back up to 9 again and within two days most of the pain had gone or was going. When all the pain reappeared it was by no means as bad as pre diagnosis but it was still there niggleing me. I gave it 2 weeks at the 9 then attempted to reduce again this time 1 day 9, 1 day 8. Again after about 4 days the pain creeped back so this time after only 1 week I upped my dose back up to 10 so that it really got a grip on the inflammation. I stayed on 10 for 6 weeks and I've only just this week reduced down from 10 to 9.5, so I'm cutting my 5 mg tablet in half and making up the difference with 1 mgs. So far I'm ok. What ever you decide to do I do suggest that if you do up your medication stay on that upped dose for a good month to 6 weeks so that it really stamps on the inflammation. Hopefully Eileen will offer advise soon. Christina
    • Posted

      Thanks both ,it certainly helps to know that some one out there understands .
  • Posted

    carol i  went down a quater  at a time  and it seems to work for me,   even tho  my doc says a quater   wont make a differance,   but i prefer to stick with  those  who  know  because they have been succesful,  with  a slow  drop.   tho i have  just gone  down to 1 1/2    he says i  should  be off the  pred in a month.  but   but no way   i will stick to my regime,  and  will be  off  sometime in april   fingers x
  • Posted

    It's difficult to say but it sounds as if the underlying autoimmune disorder is still quite active and you were maybe just on the border of enough pred to control the inflammation it is causing. I have had 1/2mg make a difference so yes, 1mg can be enough to allow symptoms back. 

    The other thing could be steroid withdrawal pain - that usually starts immediately you have reduced the dose and improves over the following week or so. Flare pain will get worse as time goes on. I was never able to reduce 1mg at a time going from every day one dose to every day new dose simply overnight, That is the reason I worked out the "dead slow and nearly stop" reduction which is described in posts 4 and 5 of this thread:

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

    The first post has links to other useful sites where you will find more info. The reduction scheme is very slow and fools the body into not noticing the reduction! It has worked for a lot of people. We used to think that it was only at lower doses this was a problem, when the percentage drops were higher. Now we realise a lot of people end up yoyoing on their pred dose at higher doses because of this pain - whether it is a flare of steroid withdrawal doesn't appear to matter - this helps avoid the pain. 

    Cocodamol rarely does much for PMR pain and it is a shame to let the inflammation get to entrenched - but I imagine there is no chance of getting the blood test brought forward, especially since it is Friday.

    • Posted

      Have started looking at sites you have recommended .Usually have to wait several weeks for blood tests , so make them at follow up appointment with doctor .But can see doc.within 3 days after test for result .Upped dose by 1 mg yesterday again so will stay at thirteen until I see my doctor .Had a lot of returning pain about 3 days after previouse level drop .Msnaged to see a doctor ,different to my usual .She seemed surprised that I was told to reduce after last blood test as she thought results hadn't gone down enough .Strikes me that there doesn't seem to be a common control of the condition . Wish I could find a support group in my area (Hertfordshire ) but havnt come across it yet .Thanks for you informative answers to all our question , you a great support to us all
    • Posted

      Stick to that doctor - she sounds to have some idea about PMR! You should really stay at the higher dose until the ESR/CRP levels stop falling as that then suggests the existing inflammation is under control. Then you can think about reducing to find the lowest dose that controls things. 

      Where in Hertfordshire are you? There is a good Cambridge group and an excellent group in Chertsey - people travel from Wales and all over the place to that one! Since the meetings are only every couple of months I think it is worth being willing to travel a bit - in fact Watford to Chertsey is the same as Basingstoke to Chertsey on the motorway and one lady from Basingstoke attends every meeting. 

    • Posted

      Will look into the Chertsey group .I am just north of St Albans .My daughter found a fybromialgia group in Stevenage ,but she found that there were more of them around . Thanks for your advice .Carol
    • Posted

      Carol, our next meeting at Chertsey is on 17th February and you will be most welcome to join us.  You wouldn't be the only 'first-timer' as we're expecting five or six newbies on that day!  We do have a member who travels from Rickmansworth but she won't be at our February meeting as she is spending a few months in warmer climes, lucky her.  If you are interested and would like further details, you can send me a personal message by clicking on the envelope to the left of my post.
    • Posted

      Thankyou for replying ,what time does your meeting start only night driving is a big concern of mine !
    • Posted

      In-joke - even Lizzie-Ellen doesn't have to leave that early! ;-)  (The lady from Basingstoke used to have mega problems finding it even with her satnav and joked she was leaving at breakfast time).

      No, you'll be fine, it is a before lunchtime meeting usually! The one I went to some of us went for lunch afterwards. I'm sure you will enjoy it - I did and do wish I could go more often.

    • Posted

      Carol, 11am.  Ending around 1pm.  The meetings always start in the mornings - I don't think many of us could handle night-time driving, especially those members whose vision is affected by either GCA or the steroids.  ,
    • Posted

      Another in-joke - even the satnav can't help when you don't know your left from your right as the lovely Lizzie used to complain!

      Watching the tennis - C'mon Andy, I need to get the roast in the oven! 

    • Posted

      Having a really thick day . Have tried to relply to you but cannot get anything up . Would you be kind enough to Send me details and and I will try to get there , providing the M25 is behaving its self . Thsnkyou Carol
    • Posted

      It's the really cheap satnavs that get me. Every 5 minutes they say, "Are we there yet? Are we there yet?"
    • Posted

      Not sure anything's as bad as that Shirley. I'm looking forward to the 17th by the way. Fingers crossed.
    • Posted

      More than just fingers crossed for you this time, Mike - I've got the flags ready, and you must be due a whole packet of biscuits!

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