hi...i’m new to this community, i recently diagnosed w ET. my paletes reached 1000, and now i’m taking thromboreductin for 2 months already (2 tablets per day), after the first month, the paletes reduces to 450, but the 2nd month when i didnt drink the medicine regularly, the paletes go up again to 690. i’m planning to change the medicine to HU (thromboreductin is very expensive)...but still afraid of the side effect...can anyone tell me the side effect of this HU..
New member diagnoses w ET: hi...i’m new to this... - MPN Voice
New member diagnoses w ET
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vivihtp
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Hi and welcome.
HU is tolerated well in most people. I have ET and have been on HU for approximately three years. It suits me well and I have no adverse side effects. The first couple of months I had a few mouth ulcers, but then everything settled down. My platelets remain stable.
Good luck
Mary
Hi I’ve never heard of thromboreductin. I started on hu. It’s tolerated well by the vast majority of people. Good luck
I have never heard of this Thromboreductin. I take HU and I am not sure if it gives me side-effects or not, there are so many other causes for side-effects. I have high MCV, at 122, the haematologist wants me to have a folate and B12 test. Macrocytosis could be caused by HU, I do feel well, I am interested in health care and I am always trying out different approaches. Currently I am cutting out "tropicals", foods that hail from the tropical regions like coffee, chocolate, cane sugar, spices. This is only an experiment. The idea is that tropical foods are often used as stimulants and pickme-ups and they may not suit someone from Northern Europe and could cause blood pressure to rise and the heart to race.
Hi Searcher! Yes you are once again after new solutions. Love it! I dropped cane sugar 18 months ago! Halleluja!! Im Greek, but Greece is not really tropics, but definitely not Northern Europe, which is where I live. Yes, country of origin makes a huge difference in our nutritional needs! What a difference. Do you eat bananas? I personally eat one small piece of 85% chocolate every day. It’s good for me. I only drink organic coffee (coffee is the most pesticide intensive food on the earth!) Greek or Turkish (or whatever you want to call it) coffee is even better. I find spices very therapeutic. BUT, they must agree with you. As long as I had a histamine problem, they were terrible for me. Since my autoimmune paleo diet, I tolerate all spices and histamine foods, even shrimps! Thromboreduktin is the name for Anagrelid in the German speaking world. I’m on it, in Austria. Have a good week.
When I took part in the November Forum at Guys, I noticed that among the hundreds of participant there were hardly any black people there and some Asians. London area is very multicultural, you would expect there to be more black faces. Maybe MPN is a white people's issue. I tried the Elimination Diet by Dr John Mansfield and got some interesting results but I am going to try it again once I get back from my holiday in May.
Next thing I am going to try is a "red" diet. eating lots of foods that are red or purple in colour, foods that stain. Pomegranate juice is believed to reduce platelets and I am thinking along the lines that blood is red, so maybe red foods will strengthen blood. No harm in trying.
Further to my earlier reply. Yes I do eat bananas, drink organic coffee and have 85% cocoa chocolate, it is all good for me but I have not been able to lose any more weight. In 2016 I cut out dairy, gluten and sugar and I lost 3st in 10 months effortlessly but now I cannot lose any more. I am not eating anything from the tropics presently except for bananas, but I do take British grown beet sugar, maple syrup from Canada and locally produced honey. See how it goes.
I don’t know if whites are more prone to this illness. I know that whites, especially north Europeans are more prone to many illnesses. The western society is the unhealthiest of all.
Are you doing these diets just only to lose weight? I did mine to reset my immune system and cure many problems. Even my thyroid has started working again and I’ve reduced my hormone by 30% after 18 months. I lost 2 stone in 14 months.
Some diet Info:
I haven’t been allowed beet sugar, only maple syrup + coconut flower sugar. I don’t eat grains except reis and some oat, no milk products or night shades. My energy comes from good fats. We are a family of 3, use 1 liter olive oil/week, pumpkin seed oil, sesame seed oil, coconut oil, 100g butter, 400-500g nuts. I drink two tbsp of high grade salmon oil daily. Lots of good useful calories. I will probably keep eating this way for the rest of my life. I feel great.
I tried fasting twice this year. No food for 2 days. Just water. My body started burning fat immediately, because it’s used to it. I never get hungry ‘cause there’s enough to burn. Old and sick body cells get trimmed down and taken out of the body. It’s like a storm in the forest that gets rid of old branches and the trees (our body) become newer, more efficient. I feel fab after that. Another thing that works great is interim fasting. Ie: don’t eat after 4pm and started eating at 8am. That is, you can eat for 8 hours and fast for hours. I know many who are doing this and are healthy. When I lived in London 1990, apparently, that was Queen Mum’s secret to longevity!
Good night!
No, I am looking for a cure for my ET but I also would like to lose weight, which of course would be beneficial. So far I have had no success in lowering my platelets but I feel so amazingly well and I want to continue to discover more secrets to good health. My liver and kidney function is now normal, iron levels are normal. Blood pressure is healthy and low. I sleep about 6 hours a night.
So you are exactly like me. I feel really great, but the platelets are the same. I do believe this therapy choice of cleaning the body, basically getting rid of all environmental insults in order to reset everything takes about 3-5 years. I starting removing amalgams and dead teeth/root canals 3 weeks ago. My liver and kidney are working well. I nevertheless have to do a liver support during the dental work, which will take toll October/Nov. 2 x per week, a small towel drenched in Sage tea, lay over liver area, put a hot water bottle over it and keep for 30“. Best before sleeping, since the liver doesn’t big cleansing act between 2-4am. A bit of work, but it’s a good path to take. Doing mercury detox at the same time. I have to juggle my meds and supplements, so that they don’t interfere with one another. That’s a challenge. My weight usually goes down in spurts. 2-3 Kilos all of a sudden and then 2-3 months of stable weight. Which basically tells me that the body is doing this on its own. I wish I could sleep better. I need 8hours, but wake up in the night. Love to hear more about your diet trials. We are what we ate 2 years ago. That means I still have a way to go. All the best. Have a great May Day.
Yes I agree, the cleansing will take time, about 3 years, I hope. Have you heard of this man called Anthony William, he is a self-proclaimed "medical medium". He has written several books and he claims that the spirit gives him information. In his book "Liver Rescue" he says that the liver wakes up around 4am and does its housekeeping in the morning. Anthony does hot advocate a low fat diet but he claims it is better to avoid fats before 1pm so as not to put extra stress on the liver having to digest fats when it is doing its housekeeping. I am very interested in Anthony William's approach and I am trying to understand where he is coming from. I have all his books and have read them twice. He also claims that platelet disorders are caused by viruses.
I haven’t heard of Anthony Williams, but I know from other sources, that the liver cleanses itself between 2 and 4am (the positive phase) and between 2 and 4 pm ( negative phase. I guess that’s why the southerners have a siesta and the northerners drink tea and coffee to keep going. Obviously the former is healthier! This is probably also why interim fasting (between 4pm and 8am- as Queen Mum did) is so healthy! I eat my fats mostly during the day. I believe that platelettes disorders are caused by all kind of things, definitely including viruses, but I’m tipping on EMFs as the major cause! If 5G happens on a big scale, we will be doomed. Brussels banned this! Hurray for Belgium!
I also believe that EMF is a possible cause of MPN. I did buy some equipment to protect myself, an earthing sheet, a small personal protection disc which I wear all the time and I feel it calms my heart. I also have a big metal bar called GeoMac which covers the whole house. I haven't got round to getting someone to install ethernet yet. Yes, 5G is a big worry, if it is ever rolled out, lots of people will start having mystery illnesses.
Hi again, Searcher! We are on the same wave length. I bought a little machine that measures EMFs in the house. I was able to pinpoint it and reduce half of it, but My tears are falling for my beautiful new 90cm Miele induction cooking area. The EMFs are horrible and I cook all the time, right in front of my body. I ordered a NASA material from Amazon that I’ll sew to the inside of my kitchen apron. I hope it’s not doing anything to the food, like microwave does. We got rid of that 20 years ago. It’s so sad that we have to get on the defensive in every way to protect ourselves. Some of my neighbours finally agreed to turn off their wifi’s at night!! What a difference! My daughter is finally sleeping through the night after years of problems. On that note, good night!
I also got together with some friends to purchase an EMF meter. Not too bad in my house, wifi is a nasty one. I will not get a smartmeter. Five years ago I had solar panels installed on my roof and the inverter in the loft gives off a lot of EMF. I surrounded it with a box covered in aluminium foil and also the wifi. I wish I had never had those panels. I do not use the microwave oven but I have one in my house because my late husband did not think there was an issue with it. He died at the age of 70, not surprisingly.
I recently came across a book called "How to Breathe" by Sally Gething. I find as I am getting older that my posture is getting more stooped. But I am now fighting back, stregthening my upper body muscles and doing yoga. If the lungs are compressed and not breathing properly, not enough oxygen is going into the body and this may cause an imbalance in the regeneration of blood. Just a thought.
Bravo! Great points Searcher! In my summer apartment on the lake, I just happened to be there last year Eastertime and I walked in and saw a man changing our meters. He said this is great, we don’t have to read them it’s done automatically and it doesn’t cost a penny. During the summer I had trouble sleeping. This apartment, on the lake, in the mountains, has anesthesia. Nowhere else have I slept better in the last 15 years. Well, I found out that these were 6 smart meters, just 9 yards from my head, where I sleep. They all send signals every 15 minutes. They know everything about us! When we are home, which appliances are working, which rooms are being used. Surveillance. A perfect set up for thieves. Researching, I found out that they are coming in all of Europe, we are to be asked and we have the right to say no. We were not asked and they were put in, very quickly and quietly. I now found out that the agency that manages the building had no idea. So, there is a fight coming. If they don’t take them out, I will. Luckily, I have legal insurance. Sorry about your panels. I was thinking of getting some. I believe if they are put in with protection underneath, they could be safe. TI put something in after they are built in must be difficult and expensive. I do hope you find a solution. But please don’t get upset about this. Step at a time. 😁 Good Night!
The "Establishment" is in denial of the effect of all these EMF appliances have on the health of the population. The smartmeter is now advertised as being Eco friendly and energy saving. But the tide is turning. In London there were huge demonstrations demanding the Government does something about climate change and the Green Party did well in the local elections yesterday. But if we want to do something about the greenhouse effect, we have to, for example, stop taking these cheap air flights to holiday destinations in foreign countries. A huge change in our life styles is demanded.
I am so on your wave length!! Just changing to organic and whole foods changed my one garbage bag a day to one a week with an increase to 5 organic waste bags in the organic waste bin weekly. If I had a yard i’d get a 5 chickens to get rid of it. : ) My next car will be a hybrid. 2,5 Liters in the City instead of 8. The cheep flights and the people who take these include cheap hotels and cheap food. The natives are making almost nothing and nature is paying for it all! My family never went on vacation. Holidays were for resting, fixing the house, car, seeing friends, having parties. It was so much nicer!
hi searcher56, does your diet impacted to your paletes? or you just want to stay healthy? i tried diet also. i visited a nutrinionist a month ago, and was hoping thru diet, i can reduced the paletes. but my nutrinionist only said that the diet will help me stay healthy not reducing my paletes.
No, so far my healthy life style has done nothing about the platelet count but I will continue "searching" for a natural cure. I feel better than I have for years and all sorts of little ailments have disappeared from my life Wish you success in your efforts to improve your lifestyle and health, your will cope better with the side-effects of medications. I am on HU and hardly notice any side-effects.
Hi Vivihtp, thanks for getting in on this chat. I also don’t know if any dietician who claims to cure the platelets through diet, but yes, our health is simply much better and our quality of life is incomparably better! Perhaps this may lead the body to help cure itself as it’s supposed to? From my research, pomegranate juice(not the seeds), cranberry juice, tachini (sesame paste), salsify/black root, and a few other foods can do this. I know for sure that sweet potato and papaya made my platelets absolutely explode. I ate these almost daily and was up 300,000 in a month! As soon as I stopped, I went back down. If there’s something that makes them go up, something go will make them go down. I’ve heard about turmeric. As soon as all my amalgams are out and I’m free of mercury poisoning, I will do a controlled experiment on myself with Curcumin/turmeric. Sometime in November. Step by step. Cheers.
Welcome! You will get a lot of support here. I have never heard of that medication. I’ve taken hydroxyures for 12 years. There are side effects to any medication. You may experience more fatigue then usual And lightheadedness. But my doctor has adjusted it over the years when it got really bad. Good luck on your journey.
Thromboreductin AKA Anagrelide is more expensive than hydroxyurea. However, it works better and has less bothersome side effects for some people. Others tolerate HU with relatively little problem and benefit from it. Lots of these meds are toxins, so it is literally "pick your poison." One size does not fit all. I was having toxic side effects despite a relatively low dose. MPN expert doc took me off - benefits not worth risk. It is important to understand how these meds work. HU is cytostatic - it interferes with DNA activity and decreases the production of all blood cells. It interferes with all DNA activity in your body, hence its side effects. It is immunosupressant (mouth ulcers, Thrush, opportunistic infections); mutagenic (breaks allele strands and interferes with DNA self- repair), carcinagenic (particulalry skin cancer), potentially leukemogenic, teratogenic (birth defects). Men and women must not get pregnant while on HU (women wait 6 mos and men 12 mos post-HU to have kids). For men, HU can severely decrease sperm count and new research shows possible hypogonadism (decreased T). For sexually active men, HU can pass into sperm so condoms recommended by some docs. Women of child bearing years mpt on the med are advised to wear gloves if they even handle the bottle. While all that sounds daunting, all of these meds come with risks and benefits. What best meets each of our needs is unique to each of us. HU works fine for some, with little or no problems. My only thought for you is that if you have found something that works for you and you tolerate it, don't switch just to save money. Your health and quality of life are worth far more than the price difference between these meds. All the best. Hope you find a good solution to your quandary.
Fabulous reply Hunter!!
thx everyone....thx for your explanation and support...it means a lot to me...i discussed a lot abt this w my husband, and we decided to continue w thromboreductin aka anagrelide..
I believe that is a good choice. Please, always take time to learn, listen to your body carefully and make sure you can talk to your doctor about everything. Your relationship with your hematologist is very important. Are you in Germany or Austria? I take Thromboreduktin. That the name for Anagrelid in the German speaking world. That is why the others in our group were confused. I’m in Austria. Feel free to ask anything and welcome!
i’m in indonesia. in my country, we only have HU or thromboreductin for ET treatment...but my doctor said HU has a lot of side effects and suggest me w thrombo instead
Hi Anag,How much Anagrelide do you take and did have have too many side effects when you first took it. Atb,tina.🤗
Hi Tina,
I first took 1 -am and 1 -pm / each 0,5mg
My thrombos went from 909 to 600 in 1 wk.
Then 2 -am and 2 -pm and they further went down to 470 in a month. I did have heart palpitations about 1,5 - 2 hrs later and some fatigue.
My hemo wanted me under 350 do I took 2-2-2 morning afternoon evening (instead of 3 -am and 3 -pm as suggested by the company).
I had massive heart throbbing, not faster or irregular, just strong. I had trouble breathing.
After 4 days, I tried to take 1-1-1-1-1-1 from 7am to 11pm in order to not have too much in my body at one time. Was hardly better and I just went back to 4 per day, this time 1-1-1-1 at 7:00-12:30-6pm-10:30pm. No heart symptoms, fatigue rarely.
My thrombos do jump around between 480 and 670, but that’s ok.
If I forget to take one during the day I take it later. If there are two st night, ie. at 9pm and 11pm, I can’t sleep well.
I do believe this is bothering my liver. I am detoxing often to make sure it keeps working properly. If you detoxify, you must wait 3 hours after taking thromboreductin and two hours before thromboreductin, else you will wash out the medication.
One of the unfortunate side effects is that this med weakens your collagen, therefore your skin, muscles, everything gets weaker, because all cell walls get weaker. In order to help this this, I make beef bone broth. Liters of it. I take 2 Kilos organic bones and 3-4 Liters of water. I simmer them (they bubble a tiny bit) for 24 hours. You get many minerals (magnesium etc from the bones and after 21 hours, the collagen from the bones starts to come out. I filter everything out with a cheese cloth and at 100 degrees fill it into jars and close tightly. When cool I put in the fridge. Keeps a month. I drink 1/2 cup a day, warm with salt, or in food/soups. This is extremely healthy!!! I can’t stress it enough. It fixes your gut also.
I wish you all the best.
I think you are making a wise choice. Your health and well-being are worth more than any amount of money. While many hematologists use HU successfully for some patients, there is an emerging trend away from it. The MPN expert-doc consultant I contacted prefers other meds for the same reason your doc gave you. All the best to you on this journey.
Hi & welcome. Hydroxyurea is considered the drug of choice because it is tolerated by more people & has the fewest side effects. Most if not all of us were very scared at first about trying it. Now most of us feel like old pros having successfully been on it for years & some of us decades. The risks of side effects like mouth sores or skin cancer can often be eliminated or greatly reduced. No matter what you do, please feel free to ask questions, complain or share joyful events. We’re all here to support you & each other. Katie
Don’t forget for patients, who are anaemic, HU is really out of the question.
HU is out of the question for many patients. My comments only apply to patients for whom the drug is appropriate. I think/hope people understand that. Katie
I just wanted to clear that, since you were answering someone who recently received a diagnosis. There was even a doctor who almost put me on this, despite my anaemia.
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