Hello All. I am seeking your counsel regarding a change to my current treatment. I am 58 years of age, live in Australia (New South Wales) and diagnosed two years ago with ET and Jak2+. I have been on aspirin so far, but due to some recent microvascular ischaemic changes in my brain am commencing treatment with Hydrea at 1 tablet per day. I am seeking any tips and hints hat you may be able to offer re taking this drug?
Many thanks.
HI,
My husband has pv jak 2 positive he's been on hydroxy for a year now he's been great had no major side effects.
Only thing he's noticed is a dry mouth but that's nothing really.
Hey Kinsale ... 
My name is Steve and I also live in NSW (Sydney).
I am relatively new to our rather exclusive club. And I was diagnosed as Post Essential Thrombocythemia (ET) Myelofibrosis as of May 6 2016. However, I am Jak2- and CALR (type 2) positive.
My Bone Marrow Biopsy (BMB) showed a grade 2 level of scarring to my bone marrow...
I have also had a TIA (minor stroke) in late August 2015. As a result I was deemed 'High Risk' and started on Hydroxyurea (HU) 500mg per day, with low dose aspirin. My dosage of HU soon became elevated to 1000mg pd. However, I was finding the going very rough suffering from a range of unwanted side-effects.
I was 57 last May, hence we are somewhat similar in our ages too...
I changed my drugs to Interferon some months ago, and while I do not enjoy having injections every (2) days, I much prefer the side-effects to that of HU.
Actually, I am just waiting to learn if I can be made eligible for Ruxolitinib (Jakafi) due to my Myelofibrosis diagnosis etc...
Please feel free to contact me anytime if you ever want to catch up for a cafe etc...
Best wishes
Steve
Hi Steve. Thanks for the update. I live in Lake Macquarie which is just south of Newcastle and just under 2 hours north of Sydney. I can see that you have had quite a journey so far since your diagnosis and I hope that the potential move to Jakafi really works for you.
My haematologist talked to me re Interferon as a possible option if Hydrea doesn't work, but I am hopeful that Hydrea and I will have a long and balanced relationship.
I have family in Sydney and travel down at various times, so I am more than happy to catch up for a coffee and a chat.
Cheers
Mark
Hey Mark...
Good to hear back from you...
Yes, it appears that what does not work for some might yet work for others...?
HU was a small nightmare for me personally. Interferon by comparison seems much more manageable. However, it would be nice to do away with the host of symptoms that I must still deal with.
Many have reported, that Ruxolitinib (Jakafi), can not only reduce one's spleen size back to something more normal but also that those aforementioned symptoms at times have also decreased allowing for a much better quality of life to be experienced etc...
I too have a sister that I visit with who lives near Lake Macquarie, ...
Happy to catch up for a cafe sometime to discuss all things MPN etc...
Enjoy the rest of your w/e...
Steve
Hi, I am 63, and have ET. At first I was only on aspirin, when I got to 60 my platelets jumped in number so I was prescribed Hydroxycarbamide. I was on it for over 3 years, I took it in the evening to lessen the tiredness it can cause. Mostly I was ok on it. But then it caused ulcers on my feet so I am now on Anagrelide. Some people get side effects some don't. 😳 But many ET sufferers have been on it for years without problems. When I first went on it I was terrified and expected all sorts of things to happen - I made the mistake of Googling it 99.9% of what I found on the internet about it was rubbish! It was a relief to find this website and read other people's experiences with it.
Anything you need to know just ask on here someone will probably already have asked it, nothing is too silly to ask!!
Best wishes
Lizzie
Dearest Lizzie. Thank you so much for this wonderful advice. I have steered away from 'Dr Google' as I have made the mistake in the past of doing that and it just was too much. I have read about the ulcer side effect and will keep an eye out for it.
my haematologist pointed me to this website when she advised me of my diagnosis and I am so glad she did. It's a wonderful and supportive community - particularly for those of us living outside the UK.
Cheers
Mark
Hi Kinsale, I was diagnosed earlier this year with ET and also jak2+. Due to my age (61) I was immediately commenced on Hydrea. I have had no adverse side effects whatsoever to date. However, I am only on one tablet a day Monday to Friday. I have a break at the weekend as my platelets reduced significantly on this drug. I just recommend you take plenty of water with the Hydrea. I also take mine after my evening meal.
Good Luck
Mary x
I found taking my tablet in the evening worked better for me. I always make sure I have eaten something before hand. Am sure you'll be fine, Sallie
Hi kinsale,
I have been on Hydrea 12 tablets a week for 20 years no side effects except dry skin , always take it with meals. Now 72 and still going strong.
Town Crier
Thanks TC. I will keep an eye on my skin condition. 72 and still going strong - I really like that.
Dear Town Crier,
Do you mind sharing with us what type of MPN you had in the beginning and what it is now? Great news you're doing so well! Thanks.
Katie
Hi katie , this is some stuff I wrote a while ago, my notes now say ET evolving PV . However my platlets still go up if reduce Hydroxy carbamide.
Also now a grandad at last
From: CHRIS ATKINS <catkinspolymer@hotmail.com>
To: MPD-SUPPORT-L@SERV.AOL.COM
Subject: Essential Thrombocythemia and the RUBBER INDUSTRY
written in 2012
I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.
I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.
Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP at the time did no understand the significance.
It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?
Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.
all the best hope the spelling is up to the mark.
all the best
Chris Atkins
Brit 69 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.
Thanks Chris for your reply. I know rubber products not good to be exposed to. Maybe 1 day they'll find correlation. Be well. Katie
Hi I am ET jak2 positive started hyroxy in July 1 tab 4 times and 2 tab 3 times per week. I also take mine at night like some of the others have mentioned to reduce any side effects which todate, touch wood, there have been none. just remember to drink lots of water and take the tablets at the same time every day.
Hope you get on ok with them
Hi Jane. Yes - I thought that taken it in the late afternoon/ early evening mark got work for me. Thanks for the reminder re the water intake - not something I am consistent at - but that will have to change. It's great to hear that there hasn't been any side effects for you.
M
Hope you get on ok. I actually take mine just before bed about 10 pm with couple glasses of water . Nurse advised this to begin with as would potentially sleep through any side affects.
Good luck
Et jak2 as well. As soon as platelets were under control dosage reduced to 1 tablet 500 mg daily for almost a year now. Taking it with my evening meal has helped tremendouslyrics with nausea and as you will hear here hydration is the key.
Hi Mark, another NSW resident here - from Forster. Diagnosed just over 2 years ago with PRV and Jak2 positive and on daily aspirin and Hydroxyurea Monday to Friday. Like others I take the Hydroxy at night and also have to remind myself about drinking plenty of water. Have no real problems with the medication since I changed to taking it at night. Good luck, as everyone says this is a good site to be on. All the best, Sandra
Hi Sandra. Good to hear from you. I've had some wonderful holidays at Forster - it's a great place! I was just saying to Kerri that up until now my hydration was probably average at best. Now I have made changes at home and work to ensure that my water intake is more consistent and higher. So far (3 days in only), taking it at night is working, but we will see how it progresses.
Cheers
Mark
Hi Mark, Oops got TV on and just been told a 65 year old man bitten by shark just south of Forster - and I was about to say to you next time you are in the area get in touch and we could meet for a coffee maybe! It is a great place so don't be put off. Hope the night dosage is working well for you, keep well. Sandra
Hello Kinsale
I have ET (JAK2 neg). I've been on Hydroxycarbomide (I believe the same chemo in the UK) for 11 months. I started on 2x 500mgs daily, which increased to 4x 500mgs daily the past two months. I was dropped down to 3x 500mgs but my platelets shot through the roof so unfortunately I'm back up to 4x a day. I'm also on 1 aspirin a day coupled with other tablets for my heart palpitations.
Side effects differ with each individual and unfortunately I'm one of these people who suffer with side effects of any medication! In the beginning I had nausea, headaches, mouth ulcers, you name it, I had it! Now, 11 months on, I just get the fatigue, tiredness, burning and itchy feet but not every day, just every now and again.
For me, despite the odd side effects, I have never felt so well being on this drug, it does exactly what its supposed to do and I'm thankful for that.
Regards
Angela
Hi Angela. Gee it seems to be quite a journey that you have had so far, but you say that despite some side effects now and then, you have never felt so well. I can see that keeping focus on how well you feel overall is essential rather than focussing on the side effects when taking Hydroxy.
Thank you for sharing your journey Sandra I really appreciate it.
Cheers
Mark
Hi, I do drink lots of caffeine free fluids and have to be really careful to flush my mouth with fluids and drink a lot when taking HU or I get mouth sores. But I've used a mild salt water rinse when I get them and they clear up fast. I take 1,000 mg 3-4 times a week, alternating with 500mg. I was advised to keep my platelets below 450 because of age (65) and prior history of many blood clots. Other than occasional mouth sores I sometimes have fatigue, always have heat intolerance now and have had lots of forgetfulness since my dose increased to this level. But none of it interferes too much with my life. Good luck. Katie
Hi Katie. Thanks for the info re mouth ulcers. You mentioned caffeine free - I do so love my morning coffee, but is this going to be a problem? I have given up alcohol (sigh), and am trying to limit my sugar intake (double sigh), but my morning coffee when I first get to work is just bliss.
Cheers
Mark
I don't think so. Just be sure to drink lots of good fluids. Also, I drink caffeinated beverages for headaches. But I think I get more mouth sores from really acidic things like pineapple. You'll do well I think.
Why the sugar reduction? Just for general health & weight?
Katie
Oh - in the last 6 months I've been diagnosed with cluster headaches so I've just been cutting out some aspects of my diet to see if they may be a trigger. Also as I have a very sweet tooth, my general health would benefit if I reigned in my sugar intake.
Mark
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