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I need convincing

Posted , 10 users are following.

TERI23
TERI23

Been on 15mg since January 23 and am try so hard to stay on it until Feb.23 and then go down to 12.5, but have gained 2 pounds and am on a diet(very discouraging) and now have developed the old moon face my cheeks look like a chipmunk. I have a had time recognizing the person in the mirror. Does anyone out there think it would be ok to go down now.I need encouragement. Help 

4 likes, 28 replies

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  • david14272
    david14272 TERI23

    Posted

    Evening TERI. I am of the male tribe so I tend not to have to worry about my looks ect.,but from the posts I  have read over the last 12months I am lead to believe it gets better as you reduce pred,Diet can help.I should think one off the Girls will be along with good advice.the best advice i can offer is reduce SLOWLY.Take care. Dave.
  • shawn99
    shawn99 TERI23

    Posted

    Hi Teri,

    I too gained some facial size and also some unwanted weight in other places. Carbohydrates should definitely be reduced and keep up the execise, if it doesn't cause any unnecessary pain.

    Since reducing the carbs and exercising regularly I have lost most of the weight I gained initially. 

    I am at 11mgs of Prednisone and slowly reducing. My face size has gone down and looking more like I used to. No more comments from my male friends about looking the Pillsbury Dough Boy.

    I would say to you to keep trying to reduce very slowly and eventually you will be pleased  with the way you look.

    Shawn

  • Sadalice
    Sadalice TERI23

    Posted

    HI!

    I have been on prednisone for almost one year. I have gained weight. IT seems

    that there is not much I can do about it as I eat very carefully, exercise 40 minutes every day. I think it is the plight of the drug... and the disease....so just forget

    about the weight unless it is making you truly miserable....but you are battling

    something which is bigger than all of us!!!!sorryAlice

  • tina-uk_cwall
    tina-uk_cwall TERI23

    Posted

    Hello Teri, would I be right in thinking that you were diagnosed in January and started the prednisolone medication of 15mgs on the 23rd of January, If I understand you correctly, then the answer to your question regarding reducing to 12.5mgs now, then the answer is no, no, no!!! 

    If you have only just been diagnosed then this dose of 15mgs is probably the most important dose you will ever take. This dose of 15mgs has a lot of work to do. It has to get all the inflamation that's caused by the auto immune condition and then work very hard keeping it under control. That's why it's recommended that you stay on 15mgs for 6 weeks, followed by 12.5mgs for 6 weeks then 10mgs for anything up to a year.

    have you understood that just because the pain and stiffness appears to have gone, it actually is still there and it's only the medication that is keeping it all under control. The minute we stop taking prednisone, which is definately not advised all the pain and stiffness would return. We have not been cured.

    the auto immune condition we have hopefully will eventually burn out but it could be 2, 3, or even 10 years before it does and throughout that time we are slaves to the medication because as I said, if we stopped taking it all the pain and stiffness would come back.

    sorry that you have put on 2lbs, I'm afraid weight gain for some of us is part and parcel of the medication. But you are on a diet which is good and it is possible to loose weight whilst on prednisone. I am currently on a diet, a low carb diet and I have list 8lbs in 3 weeks, so it is possible. As for your moon face that will go when the medication reduces but that will not be for a while yet. You say you look like a chipmunk, well I think chipmunks are very cute so stop being so hard on your self.

    back to the reduction issue. No, no, no. I say stay on it for 6 weeks, then reduce. All the best, christina 

     

    • TERI23
      TERI23 tina-uk_cwall

      Posted

      Unfortunately I have had this horrible disease for 5/1/2 years and have been yoyo back and fourth from 20 to

      5 can get down to 5 for a few weeks and then have to go back up had to go back up for the Christmas holiday but am trying to go down now.am trying to take advice to go down slowly but boy when you look like a chipmunk its hard

    • tina-uk_cwall
      tina-uk_cwall TERI23

      Posted

      Hi Teri, you've been through lots of highs and many more lows throughout your 5.5 year journey. You've had a flare up and so that really needs to be brought well under control so stay on the higher dose for the duration then reduce again slowly. You've been in this place before so you know all about tapering little and slowly. You will get back down to 5. You got there before so there's no reason why you can't again. I know that from your point of view it's like starting at the beginning all over again but you can do it. Just remember chipmunks are cute!!! All the best christina 
  • EileenH
    EileenH TERI23

    Posted

    As Christina has explained - the ored has cured nothing, Ther is no cure for PMR, all that is an option is to manage the symptoms until the underlying autoimmune cause burns out and goes into remission. 

    Your choice is stark: you can follow the reduction your rheumy has suggested which, with luck, will keep the symptoms at bay, or you can opt for the PMR to return and out up with the pain and stiffness. You have started at a dose that should, used long enough, combat all the existing inflammation. Then you will reduce to find the lowest dose that will manage the symptoms.

    I gained something in the region of 40lbs - the chipmunk look was the least of my problems.Some I gained because of immobility with the PMR in the first 5 years - I wasn't on pred. Then the fat rearranged itself to around my middle and the back of my neck and then I was switched to a different form of pred when I moved country and that didn't work, i developed a major flare and gained a who load more weight.

    In the last two and a half years I have drastically cut carbs and while still on pred have lost 37lbs so far. It can be done - but you will probably struggle a bit on an ordinary diet. Carbs encourage both fluid retention and fat deposits - low carbs helps a lot. 

    It isn't a case of pred is bad, no pred is better. The illness causes a lot of inflammation in your body. Pred combats that inflamamtion. Uncontrolled inflammation in the body causes damage to blood vessels and other tissues - and puts you at risk of other illnesses including cancer. 

    Given the pain I was in, the choice of pred and cuddly was a no-brainer in comparison. I had 5 years of pain every day - and have had 5 years of far less pain balanced by some unpleasant side effects: weight gain, a beard, awful har and skin. Pred would win if I were there again.

  • erika59785
    erika59785 TERI23

    Posted

    I am still on 20 mg...trying to go down to 15 mg, but I will do this VERY slowly this time.  I have a moon face also....at least less wrinkles!  I hope, it will go away eventually when the inflammation burns itself out.  Hopefully, someday I will feel back to normal and my face will be less puffy. A good haircut helps.....the sides covering the cheek areas.....chin length!  Just a tip.  :-)
    • tina-uk_cwall
      tina-uk_cwall erika59785

      Posted

      There you go erika, that's the spirit! The side effects are horrid, but the PMR is worse, so we all have to accept it, sit back and just go with the flow. Hopefully when we all reach the finishing line one day, our puffy faces etc will be a thing of the past, but what is important to me is tapering slowly because I've already had one flare and I've only just tapered down to  9.5 from 10mgs. In October last year I tried to reduce from 9 to 8mgs and the demon was unleashed, hopefully never again! All the best, christina 
    • erika59785
      erika59785 tina-uk_cwall

      Posted

      We'll make it eventually!!  I know.....the slow tapering is so important.  It is nice Not to have pain, but when a flare up happens......it is miserable!

      All the luck to you, too.  Christina.  Remember, we are not alone and we can cry and express our feelings on this website without getting a blank look from people----- even friends and relatives----- who do not know what PMR is all about and what the side effects of the medication can cause....even a change in our facial features.  We'll try to make the best of it!

    • tina-uk_cwall
      tina-uk_cwall erika59785

      Posted

      Yes you are quite right, prior to PMR symtoms and diagnosis I thought I was as tough as old boots, but this condition tests all our steel. I've cried more since September 2013 than I have ever done in my whole life - 50 years plus -. I know it's just the condition and the insecurity of the recovery process, but I think I'm getting back to my former self and as you say, we just have yo make the most of it! Christina 
  • pat38625
    pat38625 TERI23

    Posted

    Hi Teri, I am a newbie like yourself.  I went undiagnosed for about 6 months and then got a diagnosis in November and was put on 20mg of pred.  It was like a magic potion, I couldn't believe that I could function normally, walking round the house, getting into bed getting out of bed.  The way I have explained my PMR is that my bones and muscles had all fused into one and it was like cement.  I couldn't turn in bed, I have never experienced pain like it.  On a pain level of 1 to 10 I would give it 15.  

    I have been attending a slimming class long before PMR and it took me two and a half years to lose 1 and half stone.  I am not a big eater either.  Anyway went back to my slimming club where I used to do the weigh ins.  My pain was under control and I was down to 17.5mg pred even though the consultant Endo told me to go down to 15mg of pred.  Because of this site and the people on it, I knew it was too much of a drop and I don't want the yo yo effect.

    I noticed my jeans were getting tighter and tighter, so had to go from a size 14 to a size 16, then my cheeks were getting fatter and fatter (well they say there are no wrinkles on a balloon) so decided to go back to the slimming club and it was through Eileen on the site that I remember her saying about carbs.  My first week and I stuck to my food plan 120% and I lost nothing.  I was devasted.  The 2nd week my brother in law died so didn't get. Last week I got weighed and I had lost 4lb.  I have cut back on carbs big time.  I am due to weigh in tomorrow night and I will keep you informed.  

    If I had a choice of being slimmer and havin no moon face or be in pain and have no quality of life, I know what I would pick.  Teri I don't want to look the way I do, but I have no choice and I felt that once I accepted it then it is easier.  I will never ever give up trying to lose weight but I just want to let you know that you are not alone with this.  

    I don't know when I will get back to the weight I want to be but I know I could not go back to the pain I was in.

    So chin up, walk tall and things will definately get better.  It's because of the people like Eileen and Mrs. O and others, that I know what I know.  I will not be reducing pred at anyone elses pace if I can help it.  It will be my own pace.  My body, my pain, I will make my decisions so far.  Good luck Teri and let us know how you get on.     

    Patcheesygrin

    • erika59785
      erika59785 pat38625

      Posted

      Pat I agree with you fully!  It is important to hear input of other experience on this journey of pain, and how we can endure it better --- and most of all not being alone.
    • pat38625
      pat38625 erika59785

      Posted

      Erica, this forum and people like yourself have given me my sanity back, I could never have the information I have about PMR and steroids.  There isn't a Doctor or a Consultant that would have all the information or they just wouldn't have the time to explain it to me so I am very grateful.  I hope that people can get as much as I have from this site.  Cheers   
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