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Giant Cell arteritis for last 3 years

Posted , 8 users are following.

PaddyJoe
PaddyJoe

I have had giant cell arteritis and polymyalga for 3 years taking massive doses of steroids prescribed by Consultant. I joined this to try and loose weight which would boost my morale and self esteem. I find it extremely difficult to loose weight with the steroids. Is there anyone in the same situation who has successfully lost weight whilst still taking this medication . Any advice is very welcome. I do exercise some but I have severe oesteoarthritis of both knees, both Thank you continually swollen.

2 likes, 8 replies

8 Replies

  • EileenH
    EileenH PaddyJoe

    Posted

    Over the last 2 and a bit years I have lost 37lbs of pred-induced weight. Partly it was due to a change from one type of corticosteroid to another but I have also worked hard on diet at the same time.

    I eat very little carbohydrate, probably less than 50g of useable carb per day, lots of salad and veggies that grow above ground, portions of meat and fish that are the size of a pack of playing cards.

    I also used the "5:2 Fast Diet" (google it if you haven't heard of it) to kick start the weight loss. However, even using the 5:2 diet, if I really eat any quantity of carbohydrate I stick at the same weight, to lose weight I have to reduce carbs a lot. Another useful resource in that context that I found is a blog called Diabetic Mediterranean Diet blog - lots of explanation and suggestions if you read a reasonable amount of it. 

    Another lady, also still on pred, lost weight using one of the diet clubs (WW I think). Yet another lady who put on several stones in weight found it melted away slowly once she got to very low doses and even better once she stopped.

    However - you shouldn't STILL be on "massive" doses - high dose pred (over 20mg/day) in GCA is usually used for about 6-8 months and then the dose is reduced to the lowest dose that manages the symptoms. Unless of course your consultant has had you trying unachievable reductions...

    • PaddyJoe
      PaddyJoe EileenH

      Posted

      Hi Eileen H thank you. I have a problem with fibre  fruit and veg because I had colon cancer so choice of eats is limited quite a lot of the time. My worst carb would be white bread so need to cut that..
  • ptolemy
    ptolemy PaddyJoe

    Posted

    There was an article on the 5:2 diet mentioned by Eileen in Radio Times this week. The guy being interviewed said that he reckoned that fasting helps with inflammation and also cleans out your immune system and can regenerate it. It can help asthma, cancer and rheumatoid arthritis. He did not mention PMR but nobody seems to! I think he had done The Fast Diet on TV a couple of years ago.
  • teenyjeeny
    teenyjeeny PaddyJoe

    Posted

    I wish I could say I have lost weight but no I have put over 3 stone on  and even when I come off the pred every now and then I don't loose weight,Mind you I have so many other things wrong with me I cannot exercise even a short slow walk is hard.Now because of the weight and pred I have just been told I have diabetes

    what a nightmare. now my feet are playing up burning hot and deadful pins and needles to ad to every thing else. oh well keep smiling it will get better !!!!

    • EileenH
      EileenH teenyjeeny

      Posted

      When I started my diet I was on crutches and couldn't walk more than a couple of hundred yards even with them, and that very slowly. As I lost the weight I became able to do more. You CAN lose weight without much exercise - you just have to be tougher about what you eat/can't eat. The other lady who has lost a similar amount of weight using WW was also unable to walk far because of bursitis in her hip.

      In fact, often the fact we are exercising there is the temptation to reward ourselves - it takes a LOT of exercise to work off a chocolate bar and you often eat more than your exercise session covered!!

  • debbie27473
    debbie27473 PaddyJoe

    Posted

    Hi Paddy Joe

    I have been on Pred for a year and have also gained 3 stones. I am now on a calorie controlled diet (I prefer this as there is more flexibility with what you can eat). The weight is slowly coming down at an average of 1lb per week (so far 1.2st/9Kg. Excercise is difficult. As well as PMR, I also have spinal stenosis, pred induced diabetes, severe acid reflux and a heart problem. My point is I AM still losing weight against all the odds. I keep a strict food diary as this helps to keep me focussed. The dieting also gives us something else to think about other than the pain! Good luck. Keep us posted with your progress. Debbie 

  • janet08828
    janet08828 PaddyJoe

    Posted

    Hi PaddyJoe

    Have also been fighting the weight problems that follow with the steroids - Like Eileen I have also found that the low carb high fat diet helped. It seems to go against everything that I had ever thought - eat full fat everything, which is great - the hardest part for me is cutting out the bread - no bread, pasta, rice and preferably only veg. from above ground - so no potatoes. But it seems to work for some reason. It worked before I started the "big reduction" of the daily pred dose so I do feel that this has definitely been a contributor to the weight loss.

    Like you I also have GCA and it is a beggar to get under control, I was diagnosed a couple of years ago and have been slowly reducing the steroids ever since. My daily pred dose is 10mg at the moment, after a trial at 5mg (after a way too rapid reduction rate) I am back at 10mg. Have just been for a blood test today so am crossing my fingers that things have started moving in the right direction again.

    I agree with Eileen in that it seems odd that your steroid dose is still so high after three years. Are you on any sort of reduction at all?

    Good luck with the weight loss project.

    Janet

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