Hi, I have recently been told that I have ET as I have the Jak2 variation and a high platelet count of 512, so have just received Hydroxycarbamide 500mg to take daily. I am fortunate, that apart from itching after hot showers, I haven't had any symptoms. I am 67 so am told I am "high risk", but in trying to learn about this condition, I'm getting the feeling that taking Hydroxycarbamide to lower platelets and so reduce the risk of clots, is not necessarily correct? Do others know anything more about this, or should I just follow my Haematologists guidance and start taking them? Any replies would be most welcome and thanks in advance.
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hello dabs121, welcome to our forum. I would suggest that you have a look at the information on our website mpnvoice.org.uk, there is lots on there that will help you to understand more about your ET. There is also some great advice from other patients about coping with the itch.
With regards to the Hydroxycarbamide, it is very effective at bringing blood counts down to normal levels, reducing the risk of clots or bleeding in most people with MPNs. There is also evidence to suggest that hydroxycarbamide reduces the long-term risk of bone marrow scaring or myelofibrosis. If you have essential thrombocythaemia (ET), hydroxycarbamide can reduce your platelet counts. You can read more here mpnvoice.org.uk/about-mpns/...
Your haematologist will have taken into account many factors when prescribing this medication for you, i.e. what your risk factors are; what your blood counts are; past and current medical history. It might be a good idea to discuss this with your haematologist, to express any concerns you have about taking Hydroxycarbamide, and to ask her/him to explain why it has been prescribed for you. You can also ask your haematology nurse specialist about this, they will be more than happy to answer your questions. It is very daunting when you are advised to take Hydroxycarbamide, or indeed any medication for your MPN, so it's a good idea to ask your haematology team to explain in more detail why they want you to take it.
Hi Maz, Thank you for your prompt reply and information. It's nice to hear from someone who has this. I think part of my hesitation was all the lovely side effects that Hydroxycarbamide "might" give me, when I'm lucky to be feeling fine. The sensible answer is as you say, to prevent the risk of bone marrow scaring or myelofibrosis, along with lowering the risk of clots and bleeding.
I'm sure my Haematologist did explain why Hydroxycarbamide has been prescribed, but after having consulted Dr Google, it's all a bit a blur, but think it was because I'm considered high risk being 67 and JAK2 positive.
How have you found being on Hydroxycarbamide? Do you have any side effects?
hello David, you are very welcome. It's worth bearing in mind, that you 'might' get some of the side effects, and equally, you 'might not', and if you do, you can always discuss alternatives with your haematologist.
I have been taking them since 2008, and quite honestly, they made a huge difference to my quality of life, my platelets weren't particularly high, in the 800s, and I was under 60 when I started them, and no high risk factors, I actually started taking them because I was suffering very badly with ET symptoms: debilitating fatigue; dizzy spells; head pains; confusion, to the extent that some days I could hardly function, just getting out of bed some days was difficult, and it was no fun.
So my haematologist suggested that Hydroxycarbamide might help, I didn't want to take them, I was petrified to be honest, but I had to do something to feel better and get my life back, so I thought I would try them and see what happened, if they didn't work, or they made me feel worse or whatever, I could stop taking them. But they did work, thankfully, I didn't really have any problems, just a bit of diarrhoea at the start which settled down, and that was all. I do sometimes, very rarely, get ulcers in my mouth which is a known side effect, but I have mouthwash prescribed by my haematologist to help with that.
I still don't like taking them, but I know they are controlling my platelets, which don't tend to go over 350 now, and I only get occasional bouts of fatigue and dizziness, so all in all, they have been great for me.
I appreciate though that this isn't the same for everyone who takes them, this is just my experience of them.
Not an easy decision . I was diagnosed just over 2 years ago and STILL putting of taking hydroxicarbamide. !! I'm 65 always avoided conventional meds in favour of natural remedies ( with support from professionals)
I have JAK2 POS. Platelets gradually crept up to 1000 (last blood test results 2 days ago) I always said I'd start taking meds when reached this point . Now it has I'm thinking wait a month as results can be up or down in same day ... and MAYBE Lower ..
I feel better than I have for many years
Which is why I struggle to accept I need to take hydroxy. My symptoms are bit of a tight head sensation, sometimes floaty and a red toe. Last year toes were purple so much improved
I'm considering taking 500 dose every other day .
Maybe you could discuss that possibility with Dr? As your Platelets are not to high .
Hi Carolyn, Thank you for your reply, much appreciated. I am sorry you are having symptoms related to your ET but its good to hear that your natural remedies have helped. I will ask about the possibility of taking the 500mg every second day to start with and see if that's sufficient for me. I am very pleased to have found this site, it is so good to read of others situations and get their thoughts and advice when you are joining such a "special" club being roughly 1 in 100,000 who have this condition. While it is nice to be special, winning a part of the national lottery would be more fun but maybe not so interesting. I'm learning more about haematology than ever imagined!
Your story is very similar to mine. I was diagnosed with ET in 2016. My platelets were 502 and I am Jak2+. Because I was aged 60 I was automatically handed the prescription for hydrea.
I did question this decision at the time, as my platelets were relatively low. The haematologist pointed out the associated risks of thrombotic events (even with low numbers).
I know it’s a personal decision to begin treatment. However, for me I didn’t want to take the risk of suffering a thrombotic event, so began treatment.
I have been on a low dose of hydrea for almost six years with no issues. I’m also delighted to hear from Maz that it prevents scarring in the bone marrow too. My platelets remain stable at around 320ish.
Hello mhos61, Thank you for reply too. It is interesting to hear from somebody in a very similar situation. I think, as I am reflecting on taking Hydroxycarbamide, it does seem sensible to follow the Consultant's advice, plus its reassuring to hear you have had no issues with it, so fingers crossed, I will be fine on it too.
Like you, I don't want to suffer a thrombotic event. Since writing my earlier replies today, I am speaking to a haematologist tomorrow and will see what she says but will probably start them this weekend.
I too have ET and jak 2 mutation I am on hydroxycarbamide and aspirin due to age ,no symptoms ,but follow my hematologist advice I ask questions and want to know everything only diagnosed 6 mts ago but on 500gm a day and 1000g on Sat and sunday the 2 extra on a sat and sun started 4th nov had an appointment today and platelets decreased to 439 feel great after not being so good with the raise in meds after 6weeks got my mojo back don't need to go back now till 30th April ,doing walking joined slimming world thought weight gain was hydroxycarbamide ,but 1 st week weigh in today lost 2lb a great boost to my well being sorry this is long but it may help someone
Hello ChillyAsh34, It is good to hear that you don't have any symptoms from the hydroxycarbamide, which has been my worry, so I aim to start it on Saturday, as I'm busy tomorrow. Like many health issues, ET included, staying fit and active is good for your circulation. We have 2 dogs, so I walk them daily and do other active things too. If I can loose my extra Christmas couple of pounds, that would be a bonus!
Has your Dr ordered a bone marrow biopsy (BMB)? It's considered desirable at Diagnosis for future reference in our journey. It also gives more precise info on your MPN including your allele burden(AB) . You can also get AB from a blood test but much other info is unique to the BMB.
The itching you experience is a classic PV symptom.
You're right Jak2 + over 60 is "high risk". I'm there too and do ok on 500/day HU.
I started with over 1,000 platelets.
Has your specialist shared your other blood numbers? HCT, WBC for example? You should track these too, and possibly your Dr wants to lower some of these with the HU.
Hi ETguy, No, I'm not to have a BMB as from my bloods my Haematologist felt it wasn't necessary. I had made a note to ask if my allele burden (AB) has been measured. Until this week I had bloods taken via my GP's practice and had another set taken at my hospital visit this week, which I haven't heard the results from yet, so they may have checked AB.
I have a note of my other blood numbers, which I got from my GP's practice and will track them.
Its a steep learning curve at the moment, so thank you for the links to reports. I am the sort of person who likes to work on facts and data and to understand know what is going on, so I may make informed decisions about my treatment.
Agree on the facts/data. It's often hard to connect the two unfortunately.
I went thru the same supersonic searching and learning period at my Dx late last year. The Voice here is great to learn from and to get direction to what you want to learn.
With regard to data, the ET study I linked has this section:
<<The presence of pruritus in PV is associated with a lower risk of arterial thrombosis.>>
<<Among 396 ET patients, presence of AP (itchy showers) was found in 42 (10.6%). ET patients with AP were more proliferative, more symptomatic at diagnosis and more difficult to treat. Furthermore, they presented increased risk of thromboses (30.9 versus 17%, P = .03; OR = 2.2 [1.01;4.66]) and phenotypic evolutions (33.3 versus 13.3%, P = .0007; OR = 3.2 [1.44;6.77]), during follow-up>>
If this is accurate you do want to get all the data you can, BMB (marrow histology) , allele NGS (Next Gen Gene Sequencing) Even if it's not obviously useful right now it is likely to be later as therapies are in a blossoming stage this decade and some are likely to depend on your detailed mutations and possibly marrow condition. Also if you progress in the future, having your initial histology can be important for comparison.
I can 2nd the post here from meatoaf9, knowing ET vs PV is not always so easy, esp without the BMB and other data. My Dx remains PV but also includes ET. My Dr says I have "MPN". I'm fine with the vagueness to pick and choose but it shows you may not want to take your current DX as final.
It's unlikely a non-specialist took allele, so follow up is a good idea.
As you consider HC, it actually can have long term benefits at least in PV. This chart from a recent post shows it helps, if less so than INF;
I've done well with HC but plan to switch to Besremi. You will also see in this forum some Drs do not consider PLT level to be critical within reason, this is a subject of debate among some experts. But you do want to be sure on HCT control for example.
Hi ETguy, Thank you for this information, it's interesting. I will be seeking more data from my haematologist, which I hope she is able to give me, as I agree, it is useful to have a baseline to monitor my ET from. As you say, there are new medications coming along, which is very good news. Not taking my current diagnosis as final is a good point to bear in mind. From what I have read already I can see there are quite a lot of grey areas between MPN's, so I understand why your Dr says you have an MPN, when you may have a bit of both PV and ET.
It's good that HC has worked well for you and I hope when you switch to Besremi you find it continues to as well.
Hi there. I too was diagnosed 6 years with Jak2 pos ET. My platelets were similar to yours and when Hydroxy was suggested was very shocked to think I would have to take that course of treatment. I was on a low dose, 500 every other day for some time, but platelets were not progressing low enough. Now I take 1500 daily. I also take Clopydogrel as was intolerant to Aspirin.
I can honestly say that I feel no side effects from this at all.
I hope these replies help you along your way and I am sure if you want to re-blog on here you will get lots of help.
Hi everyone Good to hear people are doing well. I’m taking Hydroxy along with aspirin. I have ET with MPL mutation. I was terrified at the start as I am 49 and my youngest only 13. Having very little negative side effects so far from the medication and my platelets have dropped from nearly 1600 to 550 on a dose of 1000mg daily. It has slightly helped my fatigue too.
My question today is has anyone been able to have HRT patches my haematologist can’t prescribe it at the moment as platelets still high and this increases the risk of a clot.
Hi, I have ET with jak 2 , and take aspirin and hydroxy ( for last 25 years) my platelets are well controlled under 400. I am now 51 and have been on hrt tablets for the last 6 years. I was suffering terribly from insomnia , after a relatively early menopause, decision was made after long consultations with both gp and haematogolist, which acknowledged increased clot risk ( although bare in mind hrt does also protect against heart disease and osteoporosis). I could have started it earlier , but was reluctant to take more medication, but in the end it became a quality of life issue, and we all felt small increased risk worth it. So perhaps re visit the issue when platelets under control , because ET patients can take hrtGood luck
Hi Kate2008 / Jenny, I can appreciate that being younger then me when you first heard you had ET was frightening. My first Googling of JAK2 got my anxiety soaring but on reading that MPN's are not aggressive, I was very relieved.
That's great that your platelets have dropped and you have few side effects from the medication. I have felt fatigued more over the last 6 months, but have put it down to my age being 67, so will be interested to see if I feel more energised once I start my Hydroxy.
I hope you get answers to your HRT question soon - maybe make it a new blog title to a wider audience notices it.
Your question in relation to hrt maybe overlooked in this thread, as this post relates to the question posted by dabbs121.
You will get a better response if you write your own post. If you’re not sure how to do this, at the top right hand side of this page you will see ‘write’ highlighted in blue, tap on this. Give your post an eye catching title relevant to your question, and I’m sure you will receive a better response.
Started taking hydroxycarbamide tablets, initially one a day but increased to two each day when I was 70. Now eight years later my platelet levels are consistently around 200 and I have never experienced any adverse side effects.
Hello Riverjohn, Thank you for your note, its very reassuring to hear you are doing well after 8 years of treatment. I am much more encouraged to proceed with it now.
Hi. My platelets were 1600+ 2 years ago. 6 months of Interferon didn’t work but Hydroxycarbimide has. Last week they were at 409!! No symptoms which I’m grateful for. I’m. 42 with CAL-R mutation. Maybe seek a 2nd opinion or reassurance. All the best x
Hi DoubleF79, Wow, your Hydroxycarbamide has worked well for you and no symptoms, which is great. All the positive comments here have been very reassuring that starting Hydroxycarbimide should be fine. Thank you.
I too was dubious in taking Hydroxy but it was explained that my high platelets (1500) plus my age (76) made it advisable. I was put on it even before my BMB confirmed dx of ET Jak 2 on the understanding that if it turned out I didn’t have ET I would be taken off it. I have been so lucky in that I’ve had no side effects so far. The long term possible side effects are daunting but I don’t dwell on those at this point of time. One day at a time! My energy is great! I am extra careful about protection against Covid or any other infections though. Masked and distancing a lot! My team at Guys Hospital is wonderful. Any concerns I have (I did have two large bruises which spontaneously popped up before Christmas) I can call the nurse and be advised accordingly. Brilliant service! I wish you well! Sometimes it is hard to come to terms with a new dx but, having had lymphoma in 2006, I was not really shocked.
Hi Michali45, Thank you for your note. It is nice to hear that you are fine on Hydroxy. I agree, while there may be some long term effects its best not to dwell on them. Its good that your full of energy and being sensible to avoid any infections, which we are all better t doing now - maybe one positive thing about Covid, something I didn't think I'd hear myself say!
What I have read or heard about Guys Hospital has always been very good, so you are lucky to be supported by them so well.
Thanks for the reply David and best of luck, let us know how you get on when you start medication.And thank you Carol glad to hear good news on the HRT
There are other options as well such as Pegysus ( form of interferon). It’s not always offered as first choice of medication as it’s very expensive. Worth looking into. Self injection which sounds horrific but it really is quite simple. Each medication seems to affect people differently and it’s finding the one that suits you. Wishing you well
Hi Hopethelp, you have, that's an option I hadn't heard of. I'm going to go ahead with Hydroxy and see how it pans out over the next couple of months, but if it doesn't work out, its interesting to know there is an alternative. Regards,
Hi dabs121, I was 75 when diagnosed and am not considered high risk. My platelets are between 500 and 600 and I take aspirin. My hematologist says she would worry when the platelets reach 1000. I have no apparent mutated genes but I have MDS which means my haemaglobin has immature cells. I take injections for that now but no other medications because presumably it would upset the see-saw nature of my condition.
Many years ago I would itch and have hives after a hot shower but I have moved around the UK quite a lot and assumed it was down to the water (mostly I suffered from this when I lived in the north of England where the water is soft), and I no longer have this "allergy". Personally, I would seek a second opinion regarding medication. I don't consider I have any symptoms from high platelets other than a bit of easy bruising.
Hi Maggie, That's great you were not considered high risk, but now if your over 60 they think you are "over the hill", so to help slow progression of E T, they generally recommend low dose Hydroxycarbamide initially. I am getting the feeling they should consider your physical age and not your chronological age. I did seek a second opinion, this morning by coincidence, from another haematologist and she confirmed that I should start taking Hydroxy too. So I'm going to be a good boy and start with it tomorrow morning.It is interesting what you say about the water, as it is very soft where I live. I find that if I shower quickly, ie don't stand and enjoy a hot soak, then the itching is less noticeable.
Nice to hear from you, David. I was told I was low risk according to those scores they use but was shocked to have a prognosis of only ten years. As you say, they should consider physical age rather than chronological age, as I still feel 27, despite joint problems. I have fatigue, due to fibromyalgia, and having a diagnosis of another fatiguing disease doesn't seem to have made it much worse. In my case, the fatigue is caused by a lack of healthy red blood cells. They said there was no cure and treatment could be dangerous. I can only guess that this is because the RBCs and platelets are at odds/balancing each other, whichever way you want to look at it. I guess there is some reason why Hydroxycarbamide is not suitable for someone my age with an overlap condition. All the blood tests seem to be stable and I am taking erythropoitin injections which help with the breathlessness that I was suffering by boosting the RBCs. Interesting that you have noticed the same thing about hot showers.
Well, I hope your low dose of hydroxy makes you feel better; at the end of the day, along with longevity, it's how we feel that counts. Kind regards, Maggie
Nice to hear back from you too Maggie. You have certainly been through the mill with it all but all credit to you, still feeling 27. In my mind I do too, but my few creaks and groans remind me I don't have the stamina I used to. Advising any treatment is a balancing act of the pros and cons for each of us individually, which I would think is why your medical team have advised you not to have Hydroxycarbamide. It is good that your blood tests are stable and that your injections are helping you as well.
I live in US, I am 76, female, never been diagnosed. My platelet count is 760,000, no symptoms whatsoever, I asked my GP for a Dx, he said there is none you are great. For insurance purposes he comes up with normal exam and hyperlipedemia. I take no medication. My RBC count is one point higher than normal. I gave red blood cells at the donation center--they called said thank you, but don't come any more, blood cells are clumping, can't filter it, can't use it. It is now Jan. my next appointment with GP is June. Can I wait until then to tell him? He said I should lower LDL I plan to start a statin. I am so happy and full of life right now. Staying in to avoid covid, which is raging thru US, no symptoms, no treatment, right?
I started on one hydroxy when I was 55. JAK2 positive. The reason I agreed to start this was because of my symptoms. Vertigo, blurred vision,brain fog, double vision(when I had that while driving in heavy traffic, I knew I needed treatment).My platelets were over a million and blood counts were off all over the place. Last blood test everything is in the normal range.
Remember that every case is different. For me I could not deal with the symptoms, especially double vision. Your case may be different. Good luck.
Hi MPN123, That's good to hear that your blood test results are normal, which shows that Hydroxy does its job well. Fortunately I don't have many symptoms, but have wondered if my lethargy at times has been due me having ET and over the last year I have had more "senior moments" which may have been brain fog, so I will be interested to see if both these things improve - fingers crossed. I wish you continued luck too.
Brain fog!! Oh is that what it is called?! 🥸. Oh yeah! There are days!!!!!! Gets very frustrating especially when people just don’t understand and say oh same thing happens all the time to me. Can’t make them see it is so different and no it’s not the same thing. It’s a black hole not just “forgetting”. You have to have known something to forget it. So hard to explain. Was sent to a neurologist for tests. HA some test! Which one is a triangle and which one is a square. 🤓. Passed with flying colors. Oh well. Just go with the flow and smile😁
I wish I had not been as symptomatic as I was. I wish I was not on Hydroxy. But I am because of my symptoms. My recollection is that your platelets were just a little high. Your symptoms are low. If a doctor asks you to start taking it, get a second opinion. 500+ is not that high at all and have never heard of a doctor saying that someone is at a very high risk of a thrombotic event at that level. I HAVE heard them say at 1.5 million you ARE at high risk. Even on hydroxy, I do have fatigue, it is common. I still have brain fog at times. But no vision problems. All my blood counts are now normal there were highs and lows all over the place. TRUST doctors(get second,third opinions), and ask them questions. This is just my experience. ET is not a fun thing to have but it beats a lot of other things.
Hi MPN123, I got a second opinion a couple of days ago and was still advised to take Hydroxy, really as the long term benefits appear to outweigh the risks for me, mainly because of my age, being 67, so I started them yesterday with no immediate reaction. It's a shame that you still have ET symptoms, but good that your blood counts are normal, so it is helping you in that respect.
That’s me in a nut shell… same numbers and diagnosis.. only I’m 78 female. Two years ago started with 500 mg Hydrea every day.. numbers starting dropping so went to every other day…still dropped so went to every third day and that’s been it for almost a year. Holding steady at low to mid 400s. Yes there were some side effects…made me sick for a a couple of months but went away..increased fatigue but that’s very common with ET. Once in awhile sore mouth doc said rinse with baking soda..helps. Other than just “normal” MPN stuff no problems with the Hydrea. I’m one of the lucky ones. Since I knew nothing about MPN I followed hematologist directives and all has been good. Fatigue is the worse tho. I guess I’m not brave enough to handle this all on my own. Good luck.
Hi Scrollernut, Many thanks for your note. I'm sorry to hear you have had some side effects but it is good that you have a good haematologist to look after you. We all need support and I have found the many replies here of others in a similar situation very reassuring. Good luck with your continuing treatment.
Hi David. Sorry am a little late picking up this thread but what great encouragement you have been given here. I can only reiterate what many have said. I was diagnosed last year in March and started Hydroxy in August when platelets were around 550 and creeping up. I had BMB in February 2021 and ET Jak 2 positive. I too was extremely reluctant to start Hydroxy and all the side effects it was possible to encounter. I had very little. Very slight nausea a few times which passed quickly. I am considered high risk being over 70 and am on one tablet Monday to Friday and two Saturday and Sunday. My platelets have come down gradually and had a test Monday this week. For the first time they are under 400 at 387 and all bloods good. The haemo nurse was very pleased so meds are staying same at the moment. Yes initially like many headaches, blurred vision, ringing in the ears tingling etc red burning feet. Still getting some headaches and tingling even now with them at this level but can live with it. I hope you are able to take on board everyone's reassurances and positivity as you start this. Its an amazing and helpful place to be on this site.
Hi Oscarsboy, It's never too late and good to hear of another person who has found Hydroxy to be tolerated well once you got used to it. It is good that your platelets are now downand your symptoms are easier to cope with. I am very humbled by all the words of reassurance. It is always nice to know that there are a lot of kind and caring people around the world.
I was diagnosed last year with ET JAK2 at the age of 62 and was considered to be in the high risk category only because of my age as I have no other risk factors for thrombosis. I was given the option of HU or just aspirin. Since my platelets were showing a rapid increase in the course of one month, from 650 to 790's, I decided to go the HU route.
For me, HU not only dropped the platelet levels, but increased energy, practically eradicated migraines and brain fog, and decreased overall aches and pains. Even after watching the video, I decided to stay with HU and the risk of the increase in a chance of other cancers to be able to live with a clear mind and less pain.
HU response is highly individualistic, some, like myself have no side effects, others simply cannot tolerate it at all. If I were like you, not particularly effected by the ET and with relatively low platelet count for someone with ET when not treated I would ask (push) my doctor about taking a trail run of 81 mg of aspirin as the first course of treatment, rather than go on HU unless the platelet started to increase dramatically.
Hunter5582 posted the following video that showed some indications that HU did not make a difference in terms of clotting events. If I had seen this first, I would probably have taken the route of aspirin only, but I believe that that would have been a mistake given how much better I am doing on HU.
Hi Nightshadow, That's good to hear that HU lowered your platelets and gave you increased energy and got rid of your migraines and other aches and pains. I tried to watch the video but unfortunately it doesn't work for me, hey ho. I spoke with another haematologist today and was advised again that I should start on the HU as it should help prevent progression of my ET, so setting this against the slight risk of other cancers, I'm prepared to go ahead and provided I don't suffer any significant side effects, I will stay on it. I will be interested to see if I feel more energetic and less tired than I do some days.
I am taking 75mg aspirin already so hopefully the two keep me in good form.
Hi Dabs, glad you found this forum. You have received a lot of valuable advice from the people on this forum. I would only add one thing. If you have not had your EPO level checked you might want to. After many blood tests and a BMB in 2018 I was diagnosed with Jak 2+ Et age 68 at that time. I was diagnosed with PV in March 2021 when my Hct and Hgb spiked up to 55.5 and 17.5 and I started HU in July 2021. The hematologist admitted to me that the EPO test I had in 2018 was not looked at by him and the very low result I had then would have made my diagnosis at that time PV. My Hct then was only 46.5 and two different pathologists read my BMB and both said ET. I would have been started on HU back in 2018 if my diagnosis was PV. But I had no treatment for over 3 years and felt very well during that time. The only difference is that my allele burden went from 27% to 50%. Maybe starting HU or interferon back then in 2018 would have delayed or prevented the progression to overt PV, I don't know, it's probably just the natural course of the disease for some. I do know I would rather have ET than PV. I would just recommend that you have a EPO level checked as it could possibly affect treatment. I have had no problem with HU and all my blood counts are now WNL. Best of luck to you always.
Hi Meatloaf9, I have been very impressed by all the advice I have received and it is most helpful and reassuring. I have not had my EPO level checked, to my knowledge, but had not heard of it until now, so a big thank you for mentioning it. I see that it relates to the production of healthy red blood cells and I know that by red cell count was normal. However, I will add this to my list of questions for my Dr. Thank you for telling me about your experiences relating to finding out if you had PV. It is good that you have clarity on your diagnosis now and that you felt well during the 3 years it took to get this. Allele burden is another figure I am going to ask be clarified as well, as it appears to be another benchmark to monitor.
I am glad to hear that had no problems with HU as well.
Hi dabs121 Maz has said it all,I too have ET. I was feeling so rough prior to diagnosis I couldn’t wait to pop the Hydroxicarbomide. In fact I took the first dose before leaving the hospital.
I think the worst part was getting my head around what was wrong with me and then trying not to given in to it.
Bad move !! you do have to accept it and realise that fatigue does slow you down a little else you make things worse. Well I did anyway.
Hi Wyebird, I'm sorry to hear you felt so rough before getting your diagnosis and hope that your hydroxycarbamide is now helping and has few side effects.
I agree, the initial finding out took me a while to clarify and sink in. I was only told I had the JAK2 mutation in a phone call I made to get my blood test results from my GP's practice. I used Dr Google to search around it and fortunately I know a haematologist, who when I mentioned it she got me to get the rest of my blood results and then explained I had an MPN. She reassured me it wasn't bad bad news, but that it was concerning and it would need monitoring for the rest of my life, but that it shouldn't shorten it. I was lucky to have
her explain this to me and I am now viewing as just part of the baggage I am collecting as I get older! As long as my glass of wine is half full, I'm happy!
Dabs121 welcome to the forum! As you can see this is an amazing community of people with great knowledge and experience - which given the rarity of our diseases is hard to come by. On that front, is your hematologist an MPN specialist? Given the rarity of MPNs most doctors and even most knowledgeable hemos do not have the specific knowledge base to treat MPNs. When my GP first suspected I had an MPN, due to various high platelet readings over a few years, he himself told me to find an MPN specialist and not just a regular hematologist. There is a list fo specialist here on the forum mpnforum.com/list-hem./Hopefully there is one close and accessible in your area.
I can tell you that seeing an MPN specialist can be a game changer - both in their ability to answer questions and guide you as well as their knowledge of the different treatment options and just their experience with having "seen" these diseases many times before (when the average doctor and hemo will not come across the condition during their time in practice).
Hopefully you can speak with a specialist (even if on a consultant basis working with your regular hematologist). The first thing my specialist did was order a BMB (bone marrow biopsy). It was not a fun procedure (for me - others have said it was not too bad) but I am glad we did it - 1) to confirm diagnosis (ET as in the original blood work it could look like borderline PV or perhaps, as happens more than I had known - masked PV (PV masquerading as ET) - the BMB led to a definitive diagnosis; 2) borderline reading - since these conditions exist on a continuum it is also good to establish a baseline at time of diagnosis - if symptoms/conditions/bloods change in the future and you need to get another one - the specialists can compare your latests BMB to the original one and see if indeed there has been any meaningful change. Since I am hoping to live for quite some time (:-)) I thought being able to track any progress/change made a lot of sense.
As for the Hydroxyurea - it is typical first line treatment for ET. Different doctors have different cutoffs for prescribing the medication. For some it is numbers dependent (how high of a platelet count one has); for some it is age based (most automatically put it at least into consideration at 60 years of age (although I have read that some doctors as of late are pushing that to 65 for asymptomatic patients with no history of thrombosis); and for others it is symptoms-based - how many symptoms a patient has and how they are dealing with the ET.
In my personal case, I was on aspirin and watch/wait for 6 years. My platelets steadily climbed from about 520 to mid 900s before my official diagnosis post BMB. Even at the 900s level my specialist was content on watch and wait given my age (51 at the time); the general lack of symptoms and no history of thrombosis. About a year ago my platelets shot up to 1,400 at one reading and I also had bleeding of the gums (never happened before..ironically at very high platelet levels we are actually more likely to suffer bleeding versus clotting) - I really wasn't suffering from other symptoms beyond hot/red hands and feet at times and a little itching once in a while after a hot shower - but the specialist thought it prudent for me to start HU. I started out at 500mg/day (one pill) and eventually worked my way up to 1,500mg/day (3 pills a day) as we were not seeing the results for which we had hoped. At one pill a day I was fine and even at 2 a day but by the time I got to three a day I was suffering from significant side effects (extreme fatigue; blackened nails; extreme hives; shortness of breath) so my specialist worked with me to get the switch to Peg approved. I started Peg about 5months ago - initial results were positive and I have had little side effects. As of late have noticed an increase in the red/hot hands and some headaches so wondering if the Peg is not working as well as we thought but just got bloods drawn so we will see. Either way, I am very grateful that we have the medicines/options we have today!
One final thought - you will see/hear on the forum time and time again - knowledgeable, aggressive patients tend to get the best treatment. When I first went t see my specialist, I brought in a binder of articles and information (much of this from this forum) and the history (graphed/charted) of my blood work. I also had written down a list of questions I knew I wanted to get answers to and I also knew that in the moment with additional information and the little time we get to spend face-to-face with doctors, that if I was not prepared with my questions in advance, I would likely fail to ask many and then kick myself later as I wish I had asked. It took a little insistence at first (not super comfortable) but I got through all my questions and now my specialist asks me to send him any involved/long questions in advance of our appointments and he is ready to answer them when we sit down.
Hello Solyesh, Well, where do I begin. Firstly a big thank you for taking the time to write to me. I am very impressed with this forum, it is very welcoming and friendly, plus reassuring support for those of us, special enough, to have an mpn - it is quite an exclusive club! As you say, the average Dr and many haematologists will seldom, if ever, have had a patient with this disease. I have looked at the MPNforum List of MPN Specialists and there is someone, Dr Mark Drummond, about an hour and a half's drive from me in Glasgow. It is very interesting that you found seeing an MPN specialist so helpful. I agree, that setting a clear understanding and diagnosis of this condition, which we will have for the rest of our lives, is essential in managing it as best as we can. I will see if I can contact him and have him review and advise on my diagnosis, even if initially he supports it, it would be good to have an MPN specialist as part of my medical team.
I have just started on HU at 500mg/day, so will see if this is beginning to work for me in 4 weeks time when I have my bloods checked again. I hope it works for some time as your experience of it on higher doses did not sound good! I hope your recent bloods show that the Peg treatment is still working for you and that your recent symptoms subside.
I found throughout my working life that it was indeed the "squeaky hinge that got the oil" and it is maybe not unsurprising that it applies to patients and their treatment too! I think we are fortunate as patients today, in that we can access data and, in this good forum, the experiences of others, so we may discuss our condition and treatment options from a position of knowledge and understanding . I went with a list of written questions to my first Consultant Haematologists visit, which was only last week, and already have more questions noted for my next discussion.
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