Have to decide between Hydroxycarbide or Interfe... - MPN Voice

MPN Voice
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Have to decide between Hydroxycarbide or Interferon on July 4th? Cant i just keep having a Venesection every few months? I have ET

Can anyone help me chose ? I am 59yrs so have been told that I have a choice as Interferon used for younger people and Hydro used for older people, both have risks. I platelet count of 550 and really don't want to take any tablets or have injections as I have so much work to do and finish off and very worried about the side effects. Anyone else give me their experience on these drugs and why cant I have have more blood letting and no drugs ??

Big love !! xxxx

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Hi. If you are having venesections then presumably you have PV? How often are you being venesected?

A platelet count of 550 is pretty low. In an otherwise healthy patient under 60 it wouldn’t suggest a need for drug intervention especially if you don’t have debilitating side effects - and on the basis you haven’t had a previous thrombotic episode or other compromising health issues. As for venesections there is some evidence (I’m sure someone will provide the link to the relevant research) that frequent venesecting can be counter productive. What’s happening to your haematocrit levels?

With regards to the meds. I started on HU (I’m younger than you) and have had no adverse side effects whatsoever. Quite the opposite. My platelets were 1700 and are now just about with normal range. And I no longer need venesections. I feel a completely new person!

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I had Portal vein Thrombosis 4 years ago, that is when they found the JAK2 gene. My blood is very sticky, so i think they gave me venesection just to give my blood more room to move before i start the drugs.

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So I imagine the combination of a previous thrombotic episode, a raised platelet count (that hasn’t remained low on ‘watch and wait’) and the fact that you are almost sixty have all combined to put you in the ‘high risk’ category. All the same, it’s definitely worth having a detailed conversation with your haem team as to why drugs and why now.

I resisted drug intervention for a very long time but by the time my platelets reached 1700 it was a no brainer. And the reality is the HU turned out to be a bit of a miracle worker. We get very hung up on the potential side effects of these drugs but like the overwhelming majority of people I experienced only good things. Let us know how you get on.

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HI Ebot,

My haem would like to start me on HU at 800 platelets count and I am at 750 right now. So, you had over 1,000 for a long time before starting HU - did you have som noticeable symptoms as you reached 1,000 platelet count? I do not have symptoms right now at 750 platelets and have been diagnosed 15 months ago. Thanks for your anticipated response.

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It was a bit more complicated. My platelets were around 1200 for a long time. My iron levels were also ridiculously low and quite honestly, looking back, I felt pretty awful. Tired, breathless etc. However, I was of the view ‘better the devil you know ...etc’. And I just got on with it. I started taking small doses of iron supplements which made me feel a bit better. But then (about four years post diagnosis) my haematocrit levels started to rise and I had a second BMB which confirmed PV. I started having venesections which worked to an extent except I still needed them regularly to keep my counts within range. And of course I stopped the iron supplements. It was when my platelets hit 1700 that I realised the scales had tipped and HU seemed the far more sensible route. At no time did the Prof push me down the drug route although they had certainly by that point put them on the table for discussion - and I think were probably relieved when I said ‘yes’.

So in short, I was always told age 60 or a platelet count of 1500 was when they would start having a conversation with me about drug intervention. However, they were always keen to know how I was feeling and I imagine would have been open to discussing drugs had I felt the symptoms were overwhelming even if the counts were ‘OK’. Looking back, should I have resisted the drugs - given how effective they turned out to be? I don’t know. But certainly at 700 I think I was still telling my GP I was perfectly fine and didn’t need to see a haematologist!!!!

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Hi there,

I am 57 and my platelets hover at about 550 and have venesections about every 18 weeks and there is no way I'd take the drugs (apart from Aspirin) and have already talked to my consultant about this. She said at 60 it is the usual protocol to put people on hydroxy or inteferon etc but I can choose not to if nothing changes dramatically. I suppose it depends on how rapidly the haematocrit rises. It is a balancing act, risk wise! If my counts change, I will reconsider. I know some people are fine on them.

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Thank you for this. I had portal vein thrombosis 4 years ago, which is when the found the JAK2 gene but my platelets have remained ok up until 6 months ago, where they have remained above 500. I think they gave me the venesection just to give my blood a bit of space before i start the drugs. I really dont like the idea of the drugs at all. I am on 13mg of warfarin every day

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Hi, I am in very similar situation to you... and have the same thoughts. I assume that you are PV positive. How long diagnosed?How frequent do you do the blood letting?

By the way the "normal" range for platelets is 150-450 ( actually in '000 units) so you are not so far away. My platelets level is same as yours but I am older at 62 years and male.I do monthly (~6 weeks) venesections to stay with a hematocrit below 45%. (This is the critical count for clotting events....). I take baby aspirin and feel fine. Normal life.Exercise and fit.My Haemo suggested NOT to take HU if all else was well.If white cell counts stay reasonable then it is OK. I have been observing how many UK and USA doctors immediately medicate with HU (Chemo). I have decided to watch and wait ( 5 years now). My thoughts only.... I will move to HU when indications make it the right call.But not for now.Your case may be different but the choice of chem (HU) is not trivial...even though loads of people have no side effects at all.For me venesection is easy...I prefer it.

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This is good to hear..... Thanks xx

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We each have to make our own decisions but they are probably best made before a stroke etc rather than after.

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I had portal vein thrombosis and 3 areas of my liver had died .... no wonder i didn't feel very well four years ago !! My platelets have been fine all this time, I have been on 13mgs warfarin every day and now in the last 6 months, over 500 and now chemo ???!! I was not expecting this at all. They took the blood last week, i think just to ease the amount in circulation. I'm going to ask if having this done is an option rather than heavy duty drugs .... Macmillan at the West Suffolk Hospital have been BRILLIANT !!!

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Why are you talking about venesections if you are ET?

I was put in Hydroxy at 53 and there are lots of people on it under 59.

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Think they just wanted to give my blood some space to move, as my platelets were over 500. I have only had it once as I await drugs on 4th July ... I do not like the idea

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Mine were at about 1000 initially but because of other risks put me straight on Hydroxy and by titration swiftly got me into the dose I am now on, 2 per day Mon to Fri and 3 per day on Sat/Sun. Platelets have been around 300 since, except one quarter when they rose to 550 at the time I had surgery on a hernia which got infected.

Sixty seems a tipping point but it is up to you and your platelets aren’t far above normal, if you don’t want it then you have to tell them.

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It is your body, and you know how you feel. The encouraging part of HU or Interferon is that it realy decreases platelettes nicely w/o too many side effects. But your platelettes aren't that high. Mine fluctuate between 700 and 900 and I'm on aspirin (50 years old). It's encouraging to hear that some people can actually undergo remission when taking some of these drugs. There is controversy in the medical world on when to start with meds, even after 60. I feel the same way that you do, and hope either way, things go well!

Hugs!!!

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I am actually 67 and only on aspirin, I have ET. Platelets 750, with no symptoms. Everyone is so different.

Lyn NZ

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Lyndiloo/ when were you diagnosed? what age?

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2015 and I was 63.

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good for you- I hope that will be me too! thank you!

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I am 61. My platelets is at 750 with no symptoms. Doctor would like to start Hydrea at 800 platelets which idea I am not convinced. are we benefiting by the delay of taking Hydroxyurea? Thanks.

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My platelets did rise to 970 once back in 2015, then they went back to 601, so I wouldn't be rushing on to HU or anything else if you have no symptoms!

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My counts were rising and I was given the choice of hu or interferon. From my understanding, the interferon can reduce the numbers and lower the disease burden, while the hu only treats the numbers. For now I have chosen hu because of travelling long haul, and not wanting to worry about storage and needles, but I’m open to try the other later. My blood counts have improved and I’ve had zero side effects on hu. In fact, my foggy thinking has improved and I feel sharper and have only had one migraine since starting and my skin is a lot less flushed. I am 53 with ET and Jak2

Very best wishes

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wow !

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what was your platelet count ?

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I can reassure you that traveling with interferon is easy.

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1.5 million and now it is down to just over a million

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mine is only 565 ..... never heard of the millions ! x

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Hildrethbird, just fyi, when your haematologist says 550/565 that's 550,000 per microlitre blood so the 1 million/ 1.5 million isn't so crazy...

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It's a bit confusing, especially because of different ways of translating counts. I was three times normal and I am now down to two times normal. It is scary, but I have found that the medication I dreaded works for me

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Please speak to a MPN specialist. The fact that you have already had a clot and are taking warfarin makes you a high risk for clotting. I have read somewhere that 25 to 33% of untreated mpn patients may have a stroke or MI. My Doc said that the main predictor of a future clot is a past clot. Having a stroke or MI can be serious or fatal. I am 69 ET Jak2+ platelets jump around between 450 - 550. I take only aspirin per the recommendations of my mpn specialist.

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Can i ask you if platelets count are between 450-550 WITH ASPIRIN? What is you platelet count when you dont (or in the past) take any medicine?

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I have taken aspirin since the day of diagnosis. I have not yet taken any other medication. Just saying speak to your mpn specialist, everyone is different with different needs when it comes to medications.

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I am on 13mgs of Warfarin everyday

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Aspirin does not affect the number of platelets but reduces the capability of the platelets to clot.

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Me too! I am ET with CALR mutation, Platelets 750. Only on aspirin. My Haem told me I had 1% chance of a blood clot, Just the same as someone with high blood pressure having a chance of having a stroke. Looking after your cardiovascular health is just as important.

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What is good way to find an MPN specialist. My doctor is hematologist/oncologist but I want a second opinion on when to start Hydroxyurea. I have PV/ET JAK2+ and platelets of 750. Thanks

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Where do you live?

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Google "MPN Research Foundation find a MPN specialist"; it should bring up a link to "Find a Hematologist-MPN research foundation"; that should take you to the "Find a hematologist" page; Near the top of that page in red is a link to "The MPN Forum", click on that link, that should take you to the "MPN Forum Magazine" page, scroll down that page and it lists recommended MPN specialists all over the world including the US and the UK. Good luck finding one near you.

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I would question why now starting medication when usually having a thrombotic event is the first indicator to start meds. I wonder whether with no having a venesection they believe your condition has changed. If your platelets have always been at a similar level then that wouldn't play a major factor & warfarin/aspirin is to stop the stickiness as much as anything. Usually venesections are because of reducing your HCT level. If you have past blood results to hand can see which are changing but I think I'd be asking questions as to why now, what are your benefits, can you try venesections for a longer period. It could be that your cholesterol has increased or your Blood pressure which puts you more at risk. If you know the full reasoning it's always easier to make an informed decision. Best of luck x

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I am on 13mgs of warfarin every day .... I think they took the blood just to ease the platelets. Only had it done once ..... I did ask if I could take it home to make some black pudding !! I write humor and got a laugh xx

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Hi Hildrethbird. I believe that most ET patients start much later with meds and venesections. But everyone is different. My ET started at 45, I had my first, very small TIA at about 50 with 650 thrombos. Diagnosis at 52 with 823 (3rd TIA). Was immediately put on aspirin and Anagrelid. The fact that I had tendencies to episodes was a reason for meds. Other are at over 1,000 and take only aspirin, without venesections. I’d get a second or third hematologist opinion. Meds are sometimes a necessary evil, but we should take them only when it is really necessary. 🙂 Anag

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Hi - I am 60, recently diagnosed ET JAK2+, with platelets around 550.

I also have familial hypercholesterolaemia and (possibly familial) high-normal blood pressure. Because of these latter two conditions I was put straight on to aspirin and started Hydroxycarbamide 2 weeks ago. I am also having venesection this week to reduce red blood cells quickly ; this may be a one-off treatment.

I had minor side-effects for 10 days, now feel absolutely fine and my platelets are down to 480. I saw the Haemo this morning and she has adjusted the dose slightly to try to get platelets below 400.

Honestly the only issue I have is that I will end up on tablets for 3 things - but that's just the way it is and I would like to stay feeling well and reduce the risks of illness as far as possible.

Mel.

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Hi personally I’d take I would try interferon. Only because I wasn’t offered it after awful side effects with 14 anagrelide a week plus 17 hydroxi.

After dropping the anagrelide back to seven a week and having raised platelets as a result, I was given the choice Increase hydroxi or anagrelide. Despite side affects. Luckily enough 10 anagrelide plus hydroxi did the trick. Phew!!

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I am on 13mgs of Warfarine everyday .... just so you all know !!

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The fact that you need warfarin for a previous thrombotic event is a marker of being in a higher risk category for future events and for treatment of your platelet levels. Venesections are not a usual treatment for ET but for PV.

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Oh well ..... It gave me a bit of hope that i didnt have to go through all of this drug stuff. Going to start positive healing thoughts into my bone barrow and start loving it a bit !!

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Hi !! I was only slightly older when I started on Pegasys. But for many years I did with provoking forth my natural bleedings (menstruation). It worked quite fine ( about 8 years). I was bleeding like a pig every month, but I got used to it.

Then one day my blood-platelet level suddenly had moved up to 1700 -- and then I contacted my doctor ;)

In Denmark they do not willingly let you have venesections, which is a pity, cause letting blood (chemical-free) is healthy, at least if you are strong and in a good condition and eats healthy food.

Pegasys is not too bad. I would go for Pegasys if I were you-- also because Hydroxy is worse when it comes to photosensibility which can cause melanomes --brrrrrrr !

I have allergy to almost everything ;) -- so sunblockers are not for me to use.

Good wind and good luck. Hope you find a fitting path <3

Yarrowleaf

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That's an interesting one as I too had a thrombus which caused portal hypertension (had to have my liver replaced but that's another story...). My platelets are now in the normal range but as I'm deemed high risk, I'm taking aspirin and warfarin only...no plan for interferon or HU for now. Hope that provides another case study for you. The venesections are unusual....I am regularly anaemic and receive blood or iron!😊

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I believe being offered a choice is great. It’s your choice. I fought to have Pegasys. I would suggest for you to read up on both medications.

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Started HU 5 months ago 500 mg a day now on 1000mg for 2xdays then 1 tablet for 5 days. Platelets were 1689 now 850..I have ET and Calr positive. I'm 55 . I 've been lucky few side effects.. tiredness.. fatigue a bit. I've taught myself to be kind to yourself when tired.

I drink alot of water I'm careful in the sun.. I'm an avid gardener so I cover up wear a hat and glasses and use sun screen.

It's different for everyone.. at 55 didn't think I'd take medication until I was 60 however with such high platelets I wasn't taking any chances.

I've had my ups and downs but I began yoga which has helped my mindset. It's an anxious time for anyone with this medication. Don't be afraid just ask the right questions and by comming on here you are doing alot to help yourself.

Good luck with your treatment

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