Hi Everyone, I have been diagnosed with ITP just over a month ago. It has been a whirl wind. Levels increased and then went on a pretty sharp decline, started at 9, went to 148 in 4 days and 4 weeks later and I am back to 25. I am being put on a trial of Revolade/Eltrombopag. I still have my spleen and am still taking steroids. I am wondering what diet to follow. I understand that I have to have a low calcium diet, but seem to find different website that have fruit listed but they all seem to vary. I am getting a little concerned that I might get it wrong. I have been told strawberries, pineapple & raisins from my Dr. Are there any other suggestions?
Thanks very much
Tina
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tinah1974
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As per the prescription of revolade you need to avoid calcium and dairy products 4 hours before and after the revolade. Best way is to take revolade either early morning or end of day so as one side the time get passed in sleeping.
Thanks gtbtcrm. I am taking it early in the morning, so I can still have a life at night and not be restricted with what I can eat then. Was hoping for food ideas to eat. While I love fruit, its getting cold here in Australia and was looking for warm foods or combinations to have. I have found a website that suppose to list nutrients and will work from that. Thanks and have a good day!
Buddy I am not sure what food is available in Australia. I am giving you a You tube link this has been very effective if possible to follow also stay away from cosmetics as much as possible.
My advise is start taking lot of green food in your diet and if possible start taking freshly made papaya leaf extract.Though there are tablets also available I will advise you to take fresh papaya leaf extract.In India in Ayurveda (Alternative Medicine) legally practiced in India this has been given to patients for centuries to sustain platelets loss.
Am curious about the medication. I've had ITP for 20 years, and only had short term steroids 3 times within that timeframe. My counts are decreasing steadily from 60-80 for years, to now running at between 30-50, though my last one was 23. Advice from the docs in UK was to save any medication until my count was on the floor.
I don't bleed much, and am not covered in bruises, and apart from being tired, I live,with it and forget I have it most of the time. I try to get a blood test every six months.
Curious as I've said below as to why some get medication and others don't. My count this week was 23, so a bit low for me, running now at between 30-50, after dropping steadily for a while from the 60-80 that I was at for years. I am back in Belgium, and they want me in the hospital this afternoon for medication, whereas previously, the same hospital has told me to bog off until my count is <10, and I'm bleeding all over the floor, or am covered in bruises.
My UK docs last year, at an ITP centre of excellence, were happy to let me go with six monthly blood tests, as I've had this for 20 years, and can recognise the warning signs of a low count.
I think some of it is up to your own disposition; if you seem happy without treatment they won't treat - especially if you've managed for a long time without regular meds etc.
hi.i was diagnosed with ITP 2 years back,and since then i have been on diff medications.my platelet count stays around 20-30k. but my doc suggests to undergo spleenectomy. would you suggest it or should i keep taking the medicines?
If you have a look under Revolade or Eltrombopag, you will find information on them. I live in Australia and aren't sure how the system works in the UK. I am very lucky as this drug is Australia is the last resort. I have been put on a trial to take this to see how patients are using this drug as the next step after steroids do not work. So in other words, it's not approved by our Government to be given readily. I'm sorry that I can't be of more assistance, and I too am still learning about this and ITP too!
I'm just interested that they've medicated you so quickly. There doesn't seem to be a rationale for why they do or don't. Talking to a consultant in the UK, she said sometimes the long term effects of medication are worse than just living with it, and monitoring it regularly, if you are asymptomatic.
I went from 148000 to 25000 in 4 weeks and would still be dropping if my medication wasn't changed. I am hoping this will solve my issues and I can be less medicated.
Saw the docs yesterday, and they are happy to let me carry on without meds and just have six monthly blood tests, which is fine. I don't think they worry too much in Belgium til you hit <10.
Wow...I feel quite lucky. Mind you I am early stage and I'm not sure how I would have been if my treating Dr wasn't conducting a trial. Good luck and persist, even if you need to get a second opinion.
I'm quite happy not to be on medication. The Belgian opinion squares with that of the ITP specialists back in UK last year. I've lived with this for 20 years without medication, and according to the UK docs the longer I can achieve that, the better.
I took Revolade for about six months last year. My infant son wakes up at 4am every day so I usually took it then and simply waited until 8am for breakfast. On the days that was not practical I would eat melon, ham, strawberries and things like that.
You can find cereals that haven't been fortified with calcium and have them with orange juice instead of milk - or your health food shop might have rice or soya milk but again make sure it hasn't been fortified with calcium. Porridge/oatmeal is OK but again use the right kind of milk substitute.
You need to be careful with other meds too as sometimes they use things that contain calcium to bind the tablets together. Multivitamins as well as these are often full of calcium. The other thing I found really odd was bottled water - some of them can have as much as 80mg of calcium per litre. I think the guide says you can have a maximum of 50mg so drink a small bottle of water and you're already marginal.
The thing to remember is that it's not necessarily dangerous to mix it with calcium, it just stops it working properly (which is obviously a waste) but at least if you accidentally eat something containing calcium one day it shouldn't cause too much of a problem.
I was never told about not eating calcium just to not eat dairy foods 4 hours before or 2 hours after tablet. I have cup of black decaf tea and 2 rich tea light biscuits at night. Can i have this. Also chewing gum are you allowed that.Struggling sleeping since dosage was increased to 75mg.
Thanks James, I will certainly looks at that. Who knew water was an issue. I drink water like a fish. Will consume a little less in that 4 hr period. Cheers!
I have been on promacta for over a year now. At the beginning it was so hard to find a time of day that I could be consistent with to take it. After months of trying different times I figured out a 5:15 alarm worked best then I would go back to bed for an hour or so. I always take one pill out at night so if for some reason I’m overly tired and sleep through my alarm I see it when I wake and take it immediately. I used to eat right when I woke but have changed that over the year. Now I wait till almost 10:00 to eat. My platelets have never been better in the last few months turns out I have been doing intermittent fasting for the last few months by not eating after 6:00 pm and not eating till 10:00 am. I read that it can help with ITP and platlet counts. Bonus is that intermittent fasting has helped me to drop 20 pounds in the last few months. Along with healthy diet and exercise of course. Some of my favorite breakfast recipes that also are very good for platlet production are: one cup of diced sweet potatoes heated up with two eggs over easy on top with a spoonful of salsa on top. Absolutely delicious. Also, on my heavy workout days I do oatmeal mixed with vanilla almond milk, chopped up banana, a spoonful of almond butter, tablespoon of chia seeds and a bunch of cinnamon sprinkled on top. Very filling and makes for good leftovers. Hope this helps. My platelets are so high they keep lowering my meds. Hopefully I can go off of them at some point. I truly believe it’s from healthy eating, exercise and maybe the intermittent fasting. Good luck to you!
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