Diet to follow in ITP and how to shed the weight gained due to steroids

Can someone suggest me and give me some tips on diet and life style that helps to maintain the platelets level and tips to shed the weight gained due to intake of deadly prednisone... Diagnosed with ITP for the last 5 months and taken steroids starting 60mg and now tappering off the medicine and my counts are between 40 to 60 only..

17 Replies

  • My advice is to wait until your appetite diminishes before worrying about losing weight. I put on four and a half stone when on prednisolone and it took me two and a half years to lose the weight after coming off steroids. Dont rush it. Weight is not permanent. NickyD

  • Had op 1989 didn't work took pred a long time put lots of weight on then decided to think about food is it me that's hungry or steroids that helped takes willpower but it worked good luck

  • hello, I was on 80 mg and then it reduced down. I found I weirdly got up at 6am everyday and was cleaning the house on a bit of a high. Kinda benefited the house but it's not my style.... I didnt find anything about diet , certainly not given any advise by anyone which is so annoying. I was worried about weight gain and just ensured I had lots of healthy food in the house so I could always munch. I did soaked oats with grated apple, nuts and this soaked in water over night was instant yummy food. Tupperware means you have food to hand. This allowed me to avoid as much sugar as possible, avoid junk food etc. I tried to cut down on puddings and it works after a few days. Also prepare your meals, cram in vegetables and pig out on veg based meals. These are guidelines so when you eat crap/ fried breakfasts etc you can enjoy it and not get guilty.

    I think the main thing is why do we have ITP, I reckon its about inflammation whatever the cause. So avoiding sugar, alcohol, prepacked food all reduce the inflammatory pressures. I also took vit c and good quality omega 3 oils, no knowledge it they helped really but they reduce inflammation I think too.

    Exercise , fresh air and some volunteering too?

    My platelets? I had a blood test today and hoping the have inched up to near 70 or even over after 2 years from being at 1. I don't do the food religiously but I like eating like that so I have trained myself to look at sugar and dubious meat with a "really?" attitude. Also dentist bills and sugar works well. Then I enjoy it when I do at other times.

    But yes but interested to see what others write.

    Esp Any Inflammation Reducing resources

  • I don't think it is about purely about inflammation. Being pregnant triggered my ITP, and it's never gone away, 20 years and counting now.

  • Thanks. I suffer from knowing only about me, this is the value of this forum, to get a bigger perspective. I am interested in why our bodies do this. Why ITP and not something else.?

  • I am just grateful that if I have to have an auto immune disease, it's one I can live with that doesn't have a greater impact on my life. It could be something so much worse.

  • scaryteacher you eat all food or not.

  • I eat everything apart from things I dislike. I don't drink much alcohol and I avoid tonic water.

  • scaryteacherafter pragnancy you have any medicine or not ?

  • None.

  • scaryteacher when your count 10 this time what are you doing. When your count 10 period bleeding heavy.

  • I don't think I've ever claimed my count was as low as 10. The lowest has been about 15k, and I did nothing. There doesn't seem to be a correlation between my platelet count and how heavy my period is. I have always had heavy periods, years before getting pregnant and getting ITP.

  • Which process you controlled heavy periods bleeding?

  • Your questions are quite intrusive.

    Until I was pregnant, and pre ITP, the contraceptive pill. After giving birth, and having ITP, the pill for about 2 years, then I just lived with it, as the pill gave me migraines. I still live with it now.

  • I was told by my homeopath that if blood related disorders are in the genes of an individual, if ever something in those "bad" genes was going to be "triggered" by environmental factors (like stress, bad nutrition, radiation, lack of sleep etc), it would most likely be blood related for that person as well. Which does make sense. So we all have genes and a predisposition towards certain illnesses due to our genes, but it's a matter of us triggering them with bad environmental factors. Have read that a new theory now says dna damage can actually be reversed, so you can go from having triggered it back to silencing it. Functional medicine is a big believer in this.

    The other expanation I have read is more spiritual. It is the belief that every physical disease is caused by a misalignment in our spiritual/emotional axis. So then it becomes important whih part of your body is sick because different parts/illnesses symbolise different emotions/locked up traumas etc. In the case of ITP, because it's blood related, and because blood symbolises joy of life, you can analyse it to say we should all reintroduce joy into our lives. Or in other words, "play". Do the things we enjoy. Have some me time. Play 😊 So I started to iceskate again(I know it sounds crazy but I wear a helmet and go slow!). I do it simply because I miss the fun. Just an example. It's different for everyone. As long as we introduce the play concept which we usually give up into adulthood.

  • Hi madam,you eat all food or not. Plze tell me what process itp patient diet.

  • There is a consistent correlation between other autoimmune diseases and inflamation. But, by definition, an auto immune disease is a problem with the immune system. The immune system can attack tissue in joints etc and thus the auto immune disease can cause inflamation. I think it is important to get cause and effect in the right order. The immune system is the problem which causes the inflamation, not the other way around. But this is a common misconception. Omega 3 oils are good because they help inflamation and reduce the misidentifications which occur in the original auto immune disease.

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