Hi All
Was diagnosed jak2 et 4 months ago, i was offered hydroxy but after reading side affects i declined it. My plt level were 480 after being 620 at local doctors. recently had second hemo meeting and levels back up to 600 but declined hydroxy again. Am i being over cautious of the side affects of hydroxy. Trying to live healthy and feel fine but am i riding my luck of getting blood clots or even a stroke.
Thanks to any replies
You are asking a very relevant question that does not have a black and white answer. It depends on your actual level of risk for thrombosis/hemorrhage vs the risk of adverse effects from cytoreduction. The factors to be included in determining your risk include which mutation you have (JAK2, CALR, MPL, or triple-negative), the presence of additional non-driver mutations, co-occurring medical condition, and history of thrombosis or hemorrhage. Note that there is not a linear relationship between level of thrombocytosis and risk of hemorrhage; however, there is a linear relationship between level of thrombocytosis and hemorrhage. The higher the PLTs the higher the risk of hemorrhage.
The other relevant risk factor is age. The most common protocol considers age 60 to be the risk determinant. There is another protocol that uses age 65. Some MPN Specialists do not use and age-based protocol to determine when to initiate cytoreduction. They individualize the decision based on the patient's presentation. We do not all age the same. We do not all have the same medical profile at age 60. My MPN Specialist once noted, "65 is the new 35. " I love that doc!
It is worth noting that cycling between 480 and 620 is not uncommon. I used to cycle between to 500s and 700s before I initiated cytoreduction. It is normal to cycle by as much as 100 in a single day based on what is going on in the body.
You will need to determine your treatment goals, risk tolerance, and treatment preferences. Based on the priorities you set, you can make an informed decision. There are multiple options to treat ET, including hydroxycarbamide, Pegasys, and anagrelide. There are additional medications in clinical trials. It is also an option to continue with aspirin + monitor.
Suggest that you look into all of your options for treatment, comparing the risks/benefits. There is currently a shortage of Pegasys, so you would have to wait if that is your choice.
We all respond differently to these medications. I was refractory to and intolerant of hydroxyurea. I have done much better on the interferons (Pegasys then Besremi) to treat PV with thrombocytosis. The erythrocytosis and thrombocytosis are controlled and my JAK2 VAF has reduced from 38% to 10%. What matters just as much is that my quality of life has improved on the current treatment plan. I feel better now than I did 10 years ago. At age 69, I am living a good life and plan to continue doing so.
Wishing you all the best as you move forward.
Thanks Hunter, it really helps to read your replies
As always- What Hunter said!
Best,
PA
PS: To avoid going on a rant or worse about HU [again]- look at my posts/responses and you'll see my hx of side effects and the multiple reasons I had to quit taking it.
Best,
PA
Having resisted taking any medication apart from aspirin for 2 years, i understand your concerns.
My platelets went up to 1000 before I decided the risk of stroke etc wasn't worth taking
I now take hydroxicarbamide 500 every other day. Along with some supplements to help lesson any possible side effects.
Platelets down to an acceptable level.
Did consultant discuss other meds with you.? If not perhaps do some research and ask at next appointment any of the options are suitable for you.
Hunter has given good advice. Can't add anything !!
thanks, its good to know i am not the only one with these concerns
I have had et jak2+ since 1994 I could not stomach even baby aspirin so was put on a drug called diprimydole twice a day to thin the blood but a few years later got a burning pain thought it was heartburn and was chewing gaviscon for months saw my consultant who in the October ordered CT scan I got it done in the November I had it done but because it being near Christmas was in agony over Christmas and new year as soon as the GP was back open phoned for the results got told off it has been festive period changed tune when told them when scan was I had to see GP it a clot on the liver I got appointment at haematology and was offered Hu or interferon which heard bad things about so went on Hu and never have looked back Stay safe
Scottish terrier
You’ll hear a very mixed response about side effects. There are many of us who suffer few, if any, but like all meds they have to list them all!
sorry to hear your recent diagnosis. It is a nuisance.
Like you I have been very wary of treatments offered and have declined them despite having high platelets. I did this as I have had no history of thrombosis/ bleeding etc. I did a lot of research on Pubmed and drugs.com plus demanded an appointment with an MPN specialist . This is well worth doing and many folk here feel happier with their decisions once speaking to one.
As Hunter already mentioned there is no connection with platelet levels and risk of thrombosis, if you haven’t had a previous thrombosis. That’s very clear in the literature.
I think having a good clean, healthy, nutrient dense diet is sensible for this. NB: you won’t get accurate, up to date info on this from your health provider 😏 Not even worth asking them.
Medicine is usually 20+ yrs behind the real world - just think of all the horrid drugs / medical treatments given out despite knowing they we’re dangerous, ( thalidomide / frontal lobotomy - Nobel prize awarded for this one! 😵💫.)
Hunter also said platelet levels can vary about 100 in a day. Maybe I’m just odd, but on several occasions mine varied by approx 300 in just one hour . My haematologists had absolutely no idea why. It varied in both directions, same hospital, same test facility. No explanation.
I also note that WHO reduced acceptable platelet levels in 2008 from 600 to around 400, in some tests the upper range is 450. (I'm kind of skeptical about who benefits from this change, having read books by retired JAMA , BMJ editors)
I hope with your diagnostic tests they also tested your vitamin levels? If not I think it’s well worth getting your GP to do these ( vits ,D, B12, folate, iron panel) . Quite a few members here have noted they had vitamin deficiencies and have felt better with correcting these deficiencies, me included- in a BIG , hugely significant way! It’s not ok to be just into range, so always see where your levels fall by checking where you are within the test reference range. A test result on its own is meaningless.
I too am Jak 2+, platelets at dx were 1400’s and have dipped to 750’s and risen to 1600’s on nothing but aspirin . After checking with MPN specialist she agreed with my regime of ½ aspirin every 3rd day for the very minor tingling ( erythromyalgia) I get in my toes every 3 days . That’s it. I keep active and have cut out processed , rubbish food .
Good luck on your journey . Welcome to the club 😁
ha ha not really the club i would have chose to join, thanks for knowledgeable reply. lots there for me to think about going forward.
Morning!
I have eaten organic food ( absolutely nothing processed) drink only water and naturally caffeine free tea for 16 years since I was diagnosed with PV. No alcohol.
I believe we’re all different in our views but also absolutely believe in our brilliant haeamatologists and taking any drugs as advised.
I would most certainly have had a massive stroke if I hadn’t followed the advice of my haemo who specialises in MPNS. He has way more experience in MPN’s of course than I have - and I trust him implicitly.
Lifestyle and diet can most certainly help us to be and to feel well - but medication, depending on your diagnosis - is essential.
I would encourage everyone to follow medical advice. I ve had 5 covid boosters, a pneumonia jab and a flu jab.
Having had bronchitis and pneumonia ( despite my Uber healthy lifestyle here in the Lakes) necessitating a bucket load of antibiotics I don’t intend to go down that route again !
Best wishes
Louise
Really happy to hear you have a great haematologist, with a special interest in MPNs, that you trust and that you are keeping yourself well on your chosen treatment path.
Sadly my haematologist had no experience with MPNs hence I sought a 2nd opinion and that MPN specialist and I totally agreed with what I had already worked out, with my independent research and my own medical knowledge from working in the NHS. In fact I was able to bring to her attention some studies and information that she had not been aware of and she was very grateful and interested to know more. I like that in a Doctor. Nobody stops learning, ever.
Please don’t think I’m saying don’t ever do what the Drs advise. But it’s also sensible to look at the bigger picture of “health “ and where possible make changes for the better, and which might or might not be taking a medicine.
Also I do think it’s helpful for newcomers to be aware that not everyone decides to follow the advice and still live happy, healthy active lives. Each person has to weigh up the pros and cons for themselves and come to a decision that feels right for them, at that particular moment in time, which of course can change as circumstances change.
In my personal experience , I had two ‘specialist ‘ Drs telling me completely different things ! I decided to follow the least medicalised route, as that happened to coincide with the results of my own research looking at studies on pubmed. It wasn’t a guess or a gut feeling but based on solid scientific evidence in published medical journals .
Please do consider trying hydroxicarbamide. I took it for 16 years very successfully without any side effects at all.
Came off it simply because it started to cause small pre cancerous marks on my face. Easily treated with Efudix cream.
I m now on Jakafi ( Ruxolitinib)
Best not to read the side effects until you get them is my thinking. You might find HU works brilliantly for you as it does for many thousands of others.
Best wishes, Louise. Ps I m 70 and have PV
Agree with you - on HU now for 14 months (1000mg per day - 5days & 600mg on Fri and Mon): no side effects whatsoever. Got my platelet count from around 750 - 850 down to about 270 where it now stay for last 8 - 9 months
Thanks Ainslie thats interesting to know
Risk factor can simply be age ...
Hi,
I have PV and I was offered HU when diagnosed. I chose to wait until I was 60,around 18 months before I agreed to treatment. My platelets were 860 by then. At my consultation I was then offered HU or Peg interferon. I reached out to the forum for support, and overwhelmingly the response was recommending interferon. 12 month in, my levels are good and I'm now exploring a maintenance dose.
I feel your concerns on HU, I had them too. I can see though, that many do have a positive experience,and it does lower platelets. I liked the thought of interferon and it's possible affect on JAK2.
I know the forum will support you and others will explain this, far better than me, but I wanted to share my personal experience, hoping it may help too.
Keep us posted xx
Hi Lyndjs , yeah the help and support on this forum is amazing.
Thanks to everyone
As I said, there are literally thousands of people who take HU for years with no side effects.
I guess it’s horses for courses.
Interferon made me extremely poorly ( hospitalised) and made me into a serious coeliac! ( if you have previous mild symptoms with an autoimmune condition such as rheumatoid arthritis, lupus, gluten etc it can exacerbate that condition seriously)
ALL drugs have side effects of which we need to be aware but I think it’s wrong to put folk off prematurely.
I do find a lot of posts on this site can be scary and quite negative ( I know, inc this one! ) but I will always be guided by my very expert haematologist.
Louise
I think it's a tough decision on which treatment to take, and as you say there's side effects for all the meds. Sorry to hear you experienced them and you were so poorly.
Great to hear you've a good haematologist, and my apologies if my post came across as negative, that honestly wasn't my intention. I just remember how difficult the decision was for me too.
Lx
Been on HU for 9 months. No major side effects to speak of, yet. Fatigue yes, but is that the PV or the HU? Before I was diagnosed I was having vision problems, dizziness and headaches as well as fatigue. If you are living without any symptom I can understand your reluctance to go down the HU route but if you do have these symptoms the HU may even improve the quality of life. I don't like having to take this medicine but at the moment have chosen to follow medical advice. It is your decision though, good luck with what even you chose to do.👍
Hello I've been on hydroxycarbamide for 10 years and I feel extremely well . Better than not being on it.
It is scary at first
Best Wishes
Angelina
Hi, sorry for the late reply.I've Et , and been taking hydroxy for three years now. 500mg x 12 per week.
I feel well and currently the only side effect I have is slight tiredness mid afternoon. ( That could be my age!) Having said that though, I am aware side effects could start anytime during treatment.
I was very worried about starting treatment too, but if you do consider going down this route the only advice I would give is to take it with plenty of water, and keep up your fluids throughout the day.
Best wishes with your decision.
thank you for your help
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