Hello, I have been just diagnosed with ET, I have had a horrible few months preceding with ischeamic toes. After lots of tests and specialists, it was discovered that for about the past 6 years I have had elevated platelets. Despite having an amaurosis fugax in 2014 , it was never discovered. I have also had 2 bouts of Atrial Fib over the past 4 years. I am on Apixaban for AF , and Clopidergrel and now this week commenced Hydroxurea. It is good to know what’s wrong and why I was having such hellish pain in my 5 th little toe but a bit of a blow all the same. Is drinking lots of water advised to flush out your kidneys?
Look forward to hearing from others x Christine.
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Cabert
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Yes, indeed and have sustained nerve damage in my feet, toes especially. I have a glove-like sensation in my toes and my soles. I found DULOXECOR very useful, it is generally used to treat major depressive disorder (depression), Diabetic Peripheral Neuropathic Pain (nerve pain caused by diabetes) and Generalised Anxiety Disorder (excessive worry) DULOXECOR belongs to a group of medicines called Serotonin and Noradrenaline Reuptake Inhibitors (SNRIs).
Hi Christine, sorry to hear you have ET, but being diagnosed is hopefully the start of the journey to feeling better. Painful toes was also one of the few symptoms I had pre-diagnosis, the other being visual disturbances (silent migraines). At the time, I was hitting 50 and just dismissed these as aches and pains of getting old! Then I also developed very high blood pressure and that led to a series of tests that eventually resulted in a diagnosis of PV. I was put on low dose aspirin (and a hypertension med) which resolved the symptoms. But platelets kept rising to 1.5 million and HCT to 0.50 so I started Pegasys interferon in 2015. Pegasys has been great and keeps counts in range. It is advisable to keep hydrated as Peg gives me a dry mouth, but I do find that tricky, as if I drink a lot of water I spend all my time going to the loo! I have no notable symptoms now and lead a normal and busy life with full time work. Best of luck to you! I trust you will find the meds keep things well controlled with minimal side effects. Susana x
Glad to hear that you finally know what is going on and why you have been experiencing symptoms related to the ET. There is likely a link to more things that you experience. At the core, MPNs are inflammatory disorders. The JAK2 mutation does more than drive hematopoiesis It also causes your body to make too many inflammatory cytokines, which is thought to cause many of the secondary symptoms we experience. Thrombocytosis symptoms are also not just about how many platelets you have. It is about how the blood cells behave. MPNs are quite complex.
Given your symptoms/risks, it certainly makes sense that you have initiated cytoreduction. To answer your question about hydration - the answer is yes to staying well hydrated. Hydroxyurea is a toxin and hydration can help minimize the adverse effects. It is possible to over-hydrate which with A-Fib you need to be careful about. Just be sure to keep your electrolytes in balance. I pay particular attention to this as I have PV and was treated (surgically) for paroxysmal atrial tachycardia. I still experience occasional sinus tachycardia and am risk for developing A-Fib. My approach is that when I am working out or doing chores in heat that make me sweat a lot (and drink more) I always include drinks with electrolytes (but no sugar/food coloring) just to stay in a good balance.
Thanks for your reply, it’s all pretty new but I am so glad that I now know what’s wrong with me... hadn’t felt well for some time and then when the clots in the toes came it was a nightmare. I actually have 2 cancers, don’t know which one is rarer, in 2019 I was diagnosed with Multicystic peritoneal mesothelioma. Had a right hemicolectomy in October 2019. That problem is in remission and appears totally unrelated to this one.
Something to be aware of is that the JAK2 mutation predisposes us to other types of neoplasms.
Here is one example of the research
"Mutations in JAK2 have been identified in ALL and other hematologic malignancies. JAK2 is altered in 2.65% of all cancers with lung adenocarcinoma, myeloproliferative neoplasm, breast invasive ductal carcinoma, polycythemia vera, and colon adenocarcinoma having the greatest prevalence of alterations."
There is more out in the literature on this topic if you care to look. Suggest talking to a MPN Specialist about how this may apply to you. DO be aware that many oncologists will not be familiar with MPNs due to their rarity.
My own take on this is that it reinforces how important it is that we make good choices to NOT increase our cancer risks. Also to be sure we follow up on the routine monitoring that everyone should be doing anyway. That includes breast, prostate and colon cancer screenings.
That is really fascinating. Perhaps there is a link. I will take on board your advice also to make good choices, I appreciate your support. Thank you Hunter.
Hi, I was told to drink plenty of water, always use sun screen and, in my case, lots of iron rich foods as short of iron. I guess, this varies from person to person.
Thanks, yes as this drug affects all blood cell production it makes sense. I am having a further blood test in a week, 2 weeks post commencement of HU and will ask if I need to take folic acid? We can’t wrap ourselves in cotton wool but it makes sense to give our bodies every optimal chance. Thanks for your reply.
hello Christine and welcome to our forum. You have definitely had a bad time of it over the last few years, but as you say, it is good to know now what you have so that you can move forward.
I would advise that you read as much as you can on our website about ET, mpnvoice.org.uk I am sure it will help you, and of course, the lovely people on this forum will answer your questions as well.
Thanks, have my first review tomorrow. Does everyone start on a low dose of HU? I am hoping that mine isn’t increased but suppose it depends on bloods, which I had done yesterday. How are everyone’s arms going, seems like never ending jabs. Had a BMB on Friday. Will get that result too, best wishes all, x
I started my Hydroxycarbamide/Hydroxyurea treatment (just over a year ago) at 7 capsules a week (1 x 500mg daily). Quite soon it was increased to 8 a week and later to 9 a week. I'm awaiting the results of my latest blood test and hope that there won't be another increase. My last test (early this year) showed that the platelets had come down to within the (UK) normal range for the first time since they began to be monitored closely.
As HC/HU is toxic, I expect that the aim is always to have the lowest dose that is able to control the platelets and improve the symptoms of the ET.
You might be interested to know that in the early months of my HC/HU treatment I was also prescribed Allopurinol, to reduce the risk of gout (which could arise because the destruction of a high amount of platelets by the chemotherapy in these early stages might overburden the kidneys). After a while I was told that the Allopurinol could be discontinued.
MPNers are advised to drink plenty of fluids, especially water (I have read that at least 2 litres a day is recommended).
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