Hi everyone, so hoped that Pom and turmeric would keep down my platelets, but sadly they suddenly roared up to 1300 and worries re strokes necessitated returning to twice a day 0.5 mg. of Anagrelide....back with bad night sweats, constant headaches and feeling unwell most of the time. All referring to it as 'a Catch 22 situation'....
Conscious there are many on this Forum, people like Chris, who have had to put up with a million times as much, so reluctant to make a fuss. However, any hints from fellow travellers would be gratefully received.
I weigh about 46 kg (about 7 stone) and always feel that drugs are never given according to weight....haematologist confirmed this and said only concerned with the blood, not weight....
Best wishes to you all. Tinkerbell 13
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I'm weighed every time I see the haematologist. I don't know whether they would alter the dosage if my weight changed much. (It hasn't despite trying!) Also when I took turmeric my iron levels dropped sharply. Can't help you with travel, as we stay in this country.
Many thanks for reply....we staying in this country too, nowadays! Always interesting to hear from other MPNs, as shows we are so totally individual and all respond in different ways.
Anagrelide definitely brings down platelets, but always strikes me as odd that it is just only a 'side effect' and not a specific 'bringing down platelets drug'! It and I seem rather incompatible!
I Was able to get fatigue under control by taking CoQ10. I take 4 pills a day. I used to take 6, but the Paleo autoimmune diet, (started 16 months ago) adjusted to me, fixed up my general health and I am all-around much healthier.
Hi Tinkerbell. Pomegranate and fish diet for a month brought my platelets right down but made other counts go wrong, so I don't know the answer either. Have a lovely holiday.
Really interested re your Pomegranate and fish diet, and bringing platelets down - but sorry re other counts going wrong. Will you persevere with the pom and fish, or are the counts more of a worry? Are you able to give more detail about those? Best wishes and thanks and hope a happy holiday for you, too. Ours is 'kitten sitting'....! Tinkerbell
Hi Tinkerbell. I gave up eventually, I still eat plenty of fish though. I was put on interferon for 2 years then taken off 12 months ago by Professor Harrison and my platelets have stayed normal ever since. I consider myself lucky. Enjoy kitten sitting and stay well. Mel x
That is brilliant that your platelets have stayed the same...hematologist today has said I can halve my dose of Anagrelide, so hoping they will stay down for good, now, but will carry on with the Pomegranate and Turmeric 'just in case'....! Very best wishes and thank you so much for getting in touch. Keep well. Tinkerbell
I have ET that has peaked at 950. I’ve had 7 TIA’s, even at 650! It’s not really easy to tell where your problem is, because you were taking two substances. I have read that Pomegranite (juice) reduces thrombocytes, but the seeds increase thrombocytes. Turmeric thins the blood a bit and I use it for knee pain, headache, toothache, fever. It’s worked well on my whole family. I have found that when I make a change I do only one thing and wait for 3-4 weeks to see what happens. I also find my thrombocytes soar, when I have physical or emotional stress. I will be trying the turmeric regularly as soon as I’ve had my blood test next week, but only when I know that everything is stable. All the best for you.
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