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Another step back into the land of the living

Posted , 9 users are following.

sandy08116
sandy08116

It's been a year since diagnosed with GCA. Now that, I am told, has gone and coming off the drugs is all that is left to achieve. 

 

2 likes, 15 replies

15 Replies

  • sandy08116
    sandy08116

    Posted

    First day of the month means another step forward. Down to three mg prednisone and reducing 1mg each month. Significant changes: moon face gone, weight down to pre-GCA level, dryness in eyes reducing, skin is thickening and less prone to bleeding and bruising, got more energy and motivation. No temporal unease or headaches. The advice from medics was spot on, I stuck to their plan without variation and it worked. They were thrilled with the response. Digressed a bit, though. I recently developed muscle pains and thought it could be PMR (Polymyalgia Rheumatica - that often piggybacks GCA) but it went without any medication and was more likely due to heavy work around the garden. Living the single life at 75 means I have to do everything and lugged 10x40ltr bags of compost up my (uphill) lawn. I forgot that bit of advice - lots of rest, take it easy and no rigorous exercise. Lucky to have family within 10 mins who came to the rescue and cleared one year of garden neglect that had the back of the property looking like its original rainforested jungle. (The pic is of my grandson Shawn left and step-grandson Lennox)

    Another piece of good advice: the hospital rheumatologist and my GP told me there was no need to cut out food. Weight gain was a side effect but that will go. They pointed out that I needed all the nutrition (meaning good or bad) that I could get. I read of others who cut out carbs, cut out sugar blah blah. Unnecessary. The system is in a state of shock, messing with nutritional changes will not help. They said appetite will abate (a side-effect of prednisone) and so will weight gains. And that has happened. Lucky to strike those who monitor my progress who are not only medically clued up but also blessed with common sense.

    Happy New Year, my friends. May 2018 be a more progressive, less painful year. All the best.

    • lilian05079
      lilian05079 sandy08116

      Posted

      Hi sandy08116

      So happy for you sandy great start to 2018. You probably had a bit of bone pain which preds leave you with..they like to give you a going away present😊...glad your medics advice was good for your recovery..i had good medics too. Here's to you sandy08116 take it very slowly don't over do it ......my very best wishes to you..

    • Anhaga
      Anhaga sandy08116

      Posted

      Sounds good.  Go very slowly with those last few mg.

      Not sure I agree that it doesn't matter what you eat, good or bad.  I think putting high quality fuel into an engine is a lot smarter than feeding it low grade substances.   confused  

    • sandy08116
      sandy08116 Anhaga

      Posted

      Agree. I stick with eat nothing but the best in moderation.
    • Anhaga
      Anhaga sandy08116

      Posted

      I wish I could figure out what to eat so that I could gain some weight, not grains or sugar.  According to the BMI rating I'm underweight enough to be at risk of serious health issues.  I've lost that safety cushion older people are supposed to carry, and don't seem able to replace it!  eek

    • sandy08116
      sandy08116 Anhaga

      Posted

      I lost a lot of weight (after a breakup with partner) years ago. My grand-daughter (8) was concerned and put me right. She said grandmas are supposed to be fat and cuddly. How could I disappoint her!!
    • Mrs_CJ
      Mrs_CJ Anhaga

      Posted

      Hi Anhaga,

      i lost quite a bit of weight before I was diagnosed with PMR and then kept losing weight after that. I lost about 25 lbs and went down to 104 lbs.....way too thin and gaunt looking. 

      I cannot have dairy, and I don’t feel well when I eat sugar or chocolate, and also simple carbs like rice. 

      My go-to foods to gain weight were diced yams sautéed in coconut oil, baked potatoes, and whole wheat bagels with non-dairy cream cheese. For breakfast I have a large bowl of steel cut oatmeal with blueberries, freshly ground flax and chopped pecans. I eat a lot of peanut butter and almond butter. Not sure if any of these appeal to you. 

      As my pred dose has gone down, my weight has gone up.  I still don’t have a good appetite and seem to have lost some of my ability to taste food  but I’m hoping that will come back after I get off the prednisone.  I am currently on 2 3/4 mgs and it takes me about 3 months to reduce 1/4 mg.....sigh

    • Anhaga
      Anhaga Mrs_CJ

      Posted

      Thanks MrsCJ.  I got as low as about 100 lb and last time I checked I was 104.  I feel quite uncomfortable when I eat much wheat, a little, especially whole grain, is okay.  I had to watch my sugar and carb intake because of high blood sugar when starting pred.  Maybe it's just quantities.  Need to eat more food and more often!    

  • EileenH
    EileenH sandy08116

    Posted

    Good news - though how they think they know is beyond me. 
    • sandy08116
      sandy08116 EileenH

      Posted

      Experts at crossing fingers? I know what they tell me, but more importantly, I hope I am right! 
  • ptolemy
    ptolemy sandy08116

    Posted

    Hi Sandy, I do hope that the GCA has gone. I hope they are right.
  • Michdonn
    Michdonn sandy08116

    Posted

    Sandy, here we are all working our way on this journey each in our own way. We are doing it and that is the important thing. Stay active, think positive and try to smile. None of us know how long or short the PMR journey will be, but as long as we push ahead we will get there. 😉 Happy New Year

  • Michdonn
    Michdonn sandy08116

    Posted

    Sandy, we are all on our own PMR journey, but we are making progress. None of us know how long this journey will, but I firmly believe that with positive attitude, being active and a smile, we will have a better journey. 😉 Happy New Year

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