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Reducing pred dsns

Posted , 8 users are following.

paula21528
paula21528

Hi every one I have not been on here for a long time . I have been stuck on 10 mg of predisolone for some time and have gained quite a bit of weight over a stone and half so I am trying to come off pred by reducing , in the last three weeks I have tried to reduce by 1mg on the dsns method but I'm quite achy neck shoulders and especially under my bust which is really sore , should I go back to 10 mg as I was kinda ok on 10 or keep on trying with 9 or try to go to 9 1/2 thank you every body in advance

0 likes, 22 replies

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  • christophe38948
    christophe38948 paula21528

    Posted

    Hi,

    I think that going down with Pred is not healthy. My Dr. requested going down not faster than 1mg/day per months.

    I was on15mg/day (February'17) and late 12.5 and 10. Since that 9, 8, 7 etc. Presently I am on 4 but on Sunday I will start with 3mg/day for 4 weeks. No problems with pain in shoulders so far.

    Good Luck

    CW

     

    • paula21528
      paula21528 christophe38948

      Posted

      Hi I started on 15 mg March this year got down to 10 trying my hardest to get to 9 but very achy so I don't don't if to keep trying till.I have another blood test in three weeks then go back to doc or go back to ten I'm envious of you getting down to 4 I just wish I could get down further than I am. Thank you for your reply much appreciated

  • EileenH
    EileenH paula21528

    Posted

    It does sound as if 10mg is "your" dose for the moment.

    Instead of trying to force a reduction that isn't going to work, what about trying to lose the weight in a different way? It is perfectly possible to lose weight while still on pred - I lost 35lbs while still on between 10 and 15mg.

    I and a lot of others on the forums have either lost weight or avoided gaining weight while on pred by cutting carbohydrates drastically. It really does work and is quit easy to fit into life with others - they get potatoes or other carbs, you just have a big plate of above-ground veggies with your meat for example. 

    • paula21528
      paula21528 EileenH

      Posted

      Thank you Eileen the trouble with me is i have never been very big iv only weighed around 7 stone and been able to eat what I wanted without weight gain , so.for the first time in my life I.have to watch what I eat . The weight in mainly on my tummy and cheeks I know you get hamster cheeks with steroids Thank you Eileen I will try cut out chocolate because I'm a choc a holic that my trouble but many tanks for your reply

    • paula21528
      paula21528 EileenH

      Posted

      Hi Eileen should I go back up to ten or wait till I go for a blood test in 3 weeks then go back to see a doc Thank you
    • EileenH
      EileenH paula21528

      Posted

      If taking 10mg stops your pain, probably. If you leave it too long you could end up with the inflammation building up and leading to a real flare and needing to go higher to control things. YOu don't want that. The blood test may not show anything - it often lags behind and in some people the markers don't rise when they are still taking some pred, even when it is not enough to manage the symptoms. Symptoms are always king. 

  • margaret89358
    margaret89358 paula21528

    Posted

    Hi Paula the weight gain is not good I also put on a stone and a half but I have listened to others and have drastically cut carbs and have noticed the weight is starting to come off. I have listened about reducing to quickly I went from 9 back to 20mg after a flare so am now reducing slowly, I wanted to get to the end quickly thinking i would be cured, relising this horrible disease does not work like that. Try not to beat yourself up about your weight small steps and you will see redults. On a lighter note I was a weight watcher gold member for the 5th time when I was first diagnosed with PMR , following weight watchers does not work now. Take care 
    • paula21528
      paula21528 margaret89358

      Posted

      Thank you Margret my sister is a consultant for slimming world I have never been bid at the most I've weighed is 7 stone so putting on all that weight is quiet a shock been able to eat anything and everything and still not putting weight on to all of a sudden piling it on so n it looks like I have to cut out my beloved chocolate worse look ha ha Thank you for your reply

    • EileenH
      EileenH paula21528

      Posted

      Keep the dark chocolate (in moderation of course) but cut all the less endearing carbs! 
  • peggy_56092
    peggy_56092 paula21528

    Posted

    I have been on 6 mgs all of 2017, started at 15 mgs Jan 2016.  Reduced slowly to 5 1/2 Sep/Oct.  Attempted 5 mgs last two weeks but flare began which I first attributed to hip bursitis but realized when I couldn't stand up and  shoulder and neck hurt that it was a flare.  I upped to 8 mg for one day, then 7 a couple of days and today 6 1/2.  Flare seems to be gone but will up it again if not.  As noted by Elaine.on another post, PMR probably still present  at 5 1/2 mgs and PMR stays around for at least 2 years, maybe 6 yrs, or forever.  I don't mind the pred but do wish my hair would be long and straight again. 

    • paula21528
      paula21528 peggy_56092

      Posted

      Thank you Peggy I hope I can reduce pred some time soon ill go.back to 10 mg for now then try again later good luck in your reduction many thanks for your reply
  • Frit
    Frit paula21528

    Posted

    I was diagnosed with pmr in April this year - started on 15mg and have just started a reduction to 7 - so far no problems but I will follow my GPs advice and increase by 2mg if pmr flares up. I have put on a stone but having had weight gain problems for many a year I am used to adopting a strategy to lose weight so not so difficult as it is for yourself. But your predicament does remind me of comments from smokers that they did not wish to pack up because you put on weight when you stop smoking - from everything I have read on this forum and advice from my GP is that there is no solution other than to keep taking the pred until your immune system rights itself. In other words I feel your health will suffer far more if you try to reduce the predisolone whilst you still have pmr pain. Another aspect of losing weight is to burn off calories by being more active if you can.

    Hope this helps , good luck and hoping you will be able start reducing the pred soon.

    • EileenH
      EileenH Frit

      Posted

      "Another aspect of losing weight is to burn off calories by being more active if you can."

      Very true - but unfortunately that is fairly unlikely for the average PMR patient. Some rejoice at being able to move at all! But cutting carbs drastically does work - and in the context of pred also helps reduce the risk of developing pred-induced diabetes. One lady posted this last week that her Hba1c has fallen from  6.5 to 6.0 - purely as the result of cutting carbs. AND she has lost weight.

    • paula21528
      paula21528 EileenH

      Posted

      That is very true Eileen I was very active before I got pmr I still do try but I am in no way as active as I was before . And I d not really eat a lot of carbs it a lot of choc in my case but what carbs I do eat I will cut down as with choc thank you for replying
    • paula21528
      paula21528 Frit

      Posted

      Thank you frit for your reply I have gone back to 10 mg today like you said its to take predictions than suffer from not taking the correct dose to keep symptoms at bay . It's true I'm not as active as before I got pmr but unfortunately I am not as able as I once was I just wish I could be but I do try thank you once again for your reply

    • paula21528
      paula21528 EileenH

      Posted

      Eileen could you tell me what Hba1c is please thank you and sorry for being so ignorant
    • EileenH
      EileenH paula21528

      Posted

      Not ignorant at all - I should have explained. Not everyone is diabetic to know what it is.

      It is a substance in your blood, a form of haemoglobin, that is changed by the amount of glucose in your blood. It forms a measure of how high your blood sugar levels have been over the previous few months, not just a one-off figure. The odd single high BS isn't anything to worry about but if the BS level has been persistently raised it does matter as it can cause damage to blood vessels and organs. So they have a value they know is good and normal and then if it starts to rise it shows your BS levels have been higher than they should be. 

      Pred can make our liver release spikes of glucose into the blood - so really we should have our Hba1c checked every 6 months or so to be sure it isn't getting worse. Pred can cause pre-diabetes and even diabetes. Cutting carbs reduces that risk and may be enough for some people to avoid diabetes altogether even though they might have developed it because of the pred.

    • paula21528
      paula21528 EileenH

      Posted

      Thank you for explaining Eileen I don't know if iv ever been tested for diabetes , but is a dry mouth a symptom of pred or pmr or neither as I have a very dry mouth , Thank you Eileen sorry to be a pain

    • EileenH
      EileenH paula21528

      Posted

      No, not a pain at all. That's the point of the forums.

      Dry mouth isn't unusual with autoimmune disorders, in fact it is the primary symptom, together with fatigue, of one called Sjogren's syndrome. Apparently Venus Williams has it - you'd never know the way she plays tennis even now would you! Get your dentist to check your mouth - dry mouth can cause dental problems. Do you have any other dry areas - eyes maybe, or other "bits"? 

    • paula21528
      paula21528 EileenH

      Posted

      No not that I'm aware of just been to the dentist in September so teeth are ok for now Thank very much for explaining everything to me Eileen you are a very knowledgeable woman

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