I have been running between 600-800 with no medications
When I was diagnosed at 32yrs old they were 900-1000
Well this Monday I went in for my 6 month routine visit and got a call later that day they they jumped to 1462
Dr wanted me in to discuss taking hydroxurea
Hesitant to take it
Before I left they ran the numbers again and my platelets dropped to 1300
I've been stressed also I am training hard for my body building completion in September so I'm wondering if that's the reason for the jump in my numbers?
Anyway I got the script filled for hydroxurea
Still very hesitant to take it but what alternative do I have?
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Lorid68
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Hi Lorid68, completely understand how you are feeling about having to start taking Hydroxyurea. I think that perhaps you need to discuss this more with your consultant, ask her/him to explain in more detail why you should be starting medication, ask what your risk factors are with regards to the platelet numbers, and also worth mentioning your training, just so that you are aware of all the facts as to why your consultant has advised that you start Hydroxyurea. Best wishes, Maz
Many people on this forum are concerned about taking Hydroxycarbamide. Is it because it's a chemotherapy drug? I took it for 17 years, starting in 2003 and I didn't even know it was chemotherapy. MPNs had not been classed as cancers then and HU was just a form of medication. I got on well with it, very few side effects, the most troubling being occasional mouth ulcers.
I started my dose today 500mg hesitant but a blood clot or stroke is worse! And seeing everyone on here with good outcome has made me feel a bit better about starting it 😁
Good luck! I started 7 weeks now on 12 pills of 500mg a week so far no side effects. Hoping it’s working my platelets were at just under 1200 that’s despite my trying lots of alternatives to get them down
I am also hesitant to start this drug too! I am 68! Fit and well still working, so that keeps me on my toes i have been told sunshine is not good for Hydroxy, and I love the sun! Need it for my psoriasis. Its a tough call.
I agree 100% I actually say it caused my ET! When I was first diagnosed in 2015 my platelet count was up to 970, I was highly stressed also had anxiety. My stressful events did pass and my platelet count dropped to 601 now at 707. I am not on any chemo drugs either. I am taking a OTC med called DIM watch the space on this one to bring my count down.
Its a Women's Hormone Support. (Di-indolylmethane) A substance found in cruciferous Vegetables, which supports liver health for normal oestrogen levels. Have a google. I follow an MPN page on FB here in NZ where a lady has great results bring down her platelet count. I will take it for 3months and then have a blood test to see if it works for me. Here's hoping!! I bought it at Health 2,000. best wishes Lyn, Ps no side effects.
Thank you for telling me about this. Will look into it. I was diagnosed in March this year. I have changed what I eat and how I excerise in an attempt to slow progression. Have not had my bmb yet. Getting that in a couple of weeks yikes! Thanks again.
HI I totally agree with what mazcd has said i have been on it for many years sue to three blood clots i have never looked back yes it makes me tired and also nausea but the nausea is taken care off by an anti-sickness drug but it is good to talk your fears over with your consultant between the two off you will come up with the best solution good luck
I understand!! I’m 37 and my platelets were at 1,440,000 last appointment 😕 I’ve been trying my hardest to avoid medication but my dr isn’t okay with me waiting much longer, and I understand. I don’t want a stroke. I actually have a teleconference visit set up with an MPN expert the end of this month to see what he says bc my hemo - who is great, but not an MPN expert - only says I will be in Hydroxyurea, but my research leads me to believe there are better options for someone my age!
My wife was on Hydrea for about 10 years then Anagrelide for a bunch more yet the platelets hovered around a million. It may have been a coincidence but they normalized with tocotrienol for red palm oil. Her oncologist had approved it's use and adjusted her anagrelide as the platlets lowered until he took her off the Anagrelide. I said coincidence because a year later a blood test raised suspicion of MF with a sudden platelet drop and a bmb confirmed it. I still give the tocotrienol credit for getting her off Anagrelide anyway. One side effect of Hydrea is loss of magnesium so increasing it in your diet and with supplements is critical.
My wife used 50mg twice a day with a fatty food and two hours away from a vitamin E supplement because they compete for absorption. It's available in 100mg caps too.
Wyebird, research the eye's need for thiamine. There is a fat soluble form called Benfotiamine that stays in your brain and body longer. Thiamine needs it's magnesium cofactor to change it to it's active form. Hydrea causes loss of magnesium leading to a vitamin B1 (thiamine) deficiency. Thiamine deficiency has been linked many health problems yet eye health is often overlooked. Multivitamins seldom contain enough of a high absorbable magnesium to meet that need. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists other causes of magnesium deficiency in addition to the daily requirements and well absorbed forms. Also look into "nothing boring about boron" for It's benefits. Research each of the B vitamins as they work better together. On the subject of platelets, I would like you to read "The Townsend Letter December 2017" Even though your not dealing with myelofibrosis take note of the supplements involved and research each for it's effect on ET. Slowing progression is a big priority and may stand a better chance at the ET stage. Always consult with your health professional before using any supplement.
Thank you, I take magnesium supplements. I take what the opticians advise. Vision ace . It seems to have halted my macular degeneration. I’ve been taking it for almost 15 years since diagnosis aged 50 .
There are scientific papers supporting and papers saying there is not enough evidence. Either way, I take eye vitamins as precaution. What do I have to lose.
Hello. I am on Hydrea for 6 years after a Massive longembolism. I feel safe with the product. Another long embolism could be the end for me. I was 3 weeks on IC. Side effects: I hate that my nails are so fragile, little bit of hair loss and sometimes tired for no reason. But every thing better than longembolism.
So hope you can find out as much as poss. I ve been taking Hydroxy for 2 years now. At first I was very nervous about side effects but can support you and say my levels are down to around 350 and I have to date no side effects. Just due my next check, completed every 16 weeks so I feel in very good hands.
Hi nice to hear you are doing so well on hydrea. Being your platelets have gone down so much is it possible that you can take a break from meds. Has this been mentioned. Just interested in case I ever get lower platelets again !
Hi, I started taking hydrea 4weeks back . Just like you I was very hesitant about taking this medication, but platelets running over 900.
I have often thought that stress could be a factor as the past 2 years I have had a lot of worry.
It took me weeks to get my head around taking hydrea, but started 4 weeks ago. Up to now I've had one attack of gout which next day went. Also get a burning sensation in my feet. Otherwise feel the same.
I have got an apt end of month, will be interesting to see how much platelets have lowered.
That's kind of you. So hope too you can get platelet levels down.
Yes I live in Worthing West Sussex, our haem team are excellent and keep very close eyes on health This time I am also having a lactose test to check extent of ET and also to check no other damage to the systems .Very thorough.
Hello , I took hydroxurea and aspirin for about 6 years, when I was 27 and first diagnosed and had no side effects. My platelets were 1,500 and I took 3 a day (starting at 5 to bring the platelets down!) There were no other options for me at that time. I have had 11 years on aspirin alone and now 10 years on Anagrelide and aspirin.
I think it's wise to speak to your consultation, as Max says, and even get a second opinion if necessary. Good luck with everything. Lisax
Hi I was diagnosed and high platelets 6 years ago. started on 4 x 500mg a week and now on 21 per week! Perhaps I am lucky but it makes no difference to me at all. I just wondered if anyone was given a life prognosis with this as I was yet I see many on this site who have been taking it for at least 5 years longer than the prognosis I was given. Would be very interesting to hear this.
Good luck, I think like some that perhaps whatever it is better than stroke etc.
I've only recently started hydroxy. started with 500 and waited to see how i felt - nothing. Also didn't lower platelets much so went to 1000 - same - felt no effects but platelets fell to within range. I don't expect everyone to feel as I do, but I trust my doctor who has a list of credentials that is awesome, with a general sense that he cares. Most certainly he knows more than I do. Additionally, the thought of the increase of risk of a stroke increasing got into my mind. I think age is a big consideration, too. I've been fortunate enough to have lived to be 80 so the awareness of what the future holds has become accepted by me. Were I younger I'm sure I'd have a different perspective. Best of luck to you in whichever road you decide upon.
It is not always clear why we can experience a jump in thombocytosis. Numbers can vary by as much as 100K per day. Inflammation, injury, bleeding and other things can trigger reactive thrombocytosis. Perhaps the very high level exercise could contribute, but the jump in platelet levels does seem rather high. You did not mention any symptoms to accompany the unusually high numbers. This actually matters more than the numbers per se in determining your treatment plan. It is also the trend over time rather than a single jump that matters.
Regarding the hydroxyurea - there are other options. PEGylated interferon and Ruxolitinib are also options. There are other options as well. It is important to understand that ALL of the meds used to treat ET have a risk/benefit profile and we each react differently to each med. It is important for you to review each of your options and evaluate what is in your best interests based on your own priorities and risk tolerance. This is a discussion to have with your treatment team. This includes continuing your current tx plan.
Hydroxyurea facts: HU is a cytostatic medication. It interferes with DNA activity in your cells, including hemapoietic stem cells. This slows down the production of blood cells. That is its benefit. HU affects other cells in your body too. It breaks allele strands and interferes with the DNA self-repair function. It is teratogenic, carcinogenic, mutagenic, and potentially leukomegenic (with long-term use). HU "is a highly toxic medication with a low therapeutic index." Signs of HU toxicity are common at therapeutic doses. (American Society of Health System Pharmacists). There are a number of adverse effects that can accompany HU that you need to be aware of (see attached references below).
Only you can determine whether the risks are worth the benefits. If you do decide to use HU, there are some additional things to know. If you are in a relationship and are sexually active, then it is recommended that you use a condom. HU passes into semen and it is important to protect you partner from exposure to a toxic substance. The non-using partner of someone using HU is advised to wear gloves if handling the bottle to avoid exposure. HU can also cause hypogonadism in men. It can decrease your sperm count, potentially to the point of azoospermia. This is not always reversible. There is some evidence in research that testosterone count may also be reduced and the size and weight of testes may be diminished. (This is just in research and not a part of clinical practice). There is a case study where this was not reversible.
All of the above is not to say you should not consider HU, but you do need to make an informed decision. Some docs have moved away from using HU, including the MPN Specialist I consulted with. There are other options. These options may be better tolerated, but they are significantly more expensive. HU = $70/month. PEGint/Rux = $4000/month. In many healthcare systems the doc will have to justify the use of the more expensive med should that be what you want to opt for. Do be aware that many hematologists have little experience with MPNs and the meds used to treat them. That is why it is so important to consult with a MPN-expert doc to receive optimal treatment. Here is a link to docs with MPN expertise. mpnforum.com/list-hem./ .
In the interests of full disclosure, I turned out to be HU-intolerant. I experienced toxicity at sub-therapeutic doses. Others do not have so much trouble with it. Dr. Spivak was the MPN-Specialist who I consulted with. He was very clear with me that I should not take HU. The regular hematologist I used to see just did not have the needed KSAs and actually missed the fact that my ET had progressed to PV 6 years prior.
Please do be sure to consult with a MPN-expert doc. You have reasonable concerns about your treatment plan that need to be addressed. At 52, you are younger than the norm for the use of HU. When HU is used, the docs typically wait until age 60 due to the long-term cumulative risks of HU (particularly when used 10 years+).
I think the thing to do is get the numbers down to reduce risk. I have a friend who had a life changing stroke that scares me much more. My numbers reached 1200 before l was put on HU. The WHO guidance is aged 60 or and numbers over 1500. After discussion my Haematologist also thought it the right time as with high platelets numbers he thought the risk from Covid might be greater with a second wave. So l started a little earlier. If my numbers had been around 700 l probably would have stuck to just aspirin- but we are all different. At the end of the day diet excercise alternative therapies stress relief all undoubtedly help but we also all have a chronic illness. Some Meds are unfortunately unavoidable at certain points and maybe a necessity. Discuss with a good MPN doctor that is also empathetic and find a way that is safe and beneficial to your lifestyle circumstances age etc
I have had ET for about 4 years. I am 76 and in good health. I eat a whole food, plant based diet. I do Crossfit 3x a week. My last platelet count was in the 700s. I have been hesitant to start HU, although my doctor recommends it. In stead I take two low does aspirins a day. One in the morning, and one in the evening.
My son is 18 and his platelets hover around 1.1 million. They have him on aspirin. There is no rush for him to take a prescription.
His previous hematologist wanted to put him on HU, but my son had done his research on meds and had decided on peg- interferon. The hematologist (at Children’s Hospital) didn’t have experience with PEG so she transferred him to an MPN specialist.
The specialist agreed that PEG would be the choice as he is younger. However, she didn’t feel he needed a prescription. He now gets bloodwork every 3 months and does a tele-health Zoom call. She wants an in person visit every year. This is subject to change if there are issues. Seeing an MPN specialist has been huge. Their knowledge and experience is wider.
You are young (I’m 53 and I’m finding my idea of young keeps changing! 😂). HU is not your only option. There are other alternatives you can look into. Ask your doctor lots of questions! Don’t be satisfied until you feel comfortable with the answers! Good luck in your body building contest!!
Discuss your fears with your heamo but drugs or stroke 🧐. No brainier . I had a stroke approximately 3 weeks After my 50thbirthday ( hadn’t got ET at the time not until 10 years later) and approximately 6 weeks after doing the‘ great north run ‘ so I’m talking from experience. I was lucky. I recovered.
Hi do you have any pain or discomfort or shortness of breath I do I had a marrow bone biopsy have you had one I have been on Hydrea for two months I do feel better for it and my platelets have come down from 842 to 652 lm on two a day 500 mg each good luck
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I was diagnosed in March this year. I have changed what I eat and how I excerise in an attempt to slow progression. Have not had my bmb yet. Getting that in a couple of weeks yikes! Thanks again. 
Hello
Has anyone tried alternate anti-inflammatory agents for MPNs?
Pegasys Copay! 
