Hi. I was diagnosed with probable PV on 23.1.18 with a haematocrit level of 63%. Was started on immediate aspirin and weekly venesections. By 22nd Feb it was down to 51% and heading down further the following week. At my Consultant appointment PV was confirmed. I was told that the venesections were not working for me, prescribed with hydroxycarbomide and bi-weekly venesections. My question is whether I should take the hydroxy straight away as according the results from the haematology unit, the venesections are working well. I would prefer to wait for medication intervention until it was confirmed absolutely necessary by the venesection results. Do I just take the medication or ask for another appointment or second opinion to decide on the way forward? Thank you for your comments - really appreciate this forum as I deal with my diagnosis.
Hello Sue,
I understand from the way that you write the date that you are in UK.
I am a bit confused. Is your consultant not part and parcel of the haematology unit?
Why the conflicting opinions about whether the venesections are working well or not?
I have refused to take the hydroxycarbamide since I was diagnosed two years ago (it is the course of choice for people over 65 where I live in England but I have always hated drugs of any kind and don’t see why I should change my mind now) so I just take aspirin (under duress) and have venesections about every other month now. Are you over 65? The consultant may just be “following orders” from the NHS by prescribing the drug as there is apparently a higher risk of having a stroke or heart attack if you are over 65 and opt not to take them.
One more thing confuses me. Have you been handed the hydroxycarbamide and just told to take them whenever you want? My hospital haematology unit would, if I had let them, administered the first course, along with an anti-emetic, while I was sitting in front of them. I would not have been given any choice about waiting to see if the venesections were working or not.
Finally, you are lucky to have been diagnosed. Such a high haematocrit is very serious. It does seem to be falling quite well, to my untrained eye. Mine hovers around 47% after two years and, although the staff keep on at me to give in and take the drugs, I personally am happy with that reading.
It is all a case of pros and cons, weighing up how you feel about things. Nobody can make you do anything that makes you feel uncomfortable. All they can do is offer you the benefit of their experience. In the end, it is up to you.
Thanks Angela.
Yes I am in England. I am only 53 so am keen to avoid drugs at present if possible. I have my hydroxy and was expecting to just take them daily but am obviously questioning whether I should and concerned about conflicting opinions - hence the questions on this post.
Very helpful reply - thank you.
I suppose that each hospital has its own guidelines and theories. I am in north Derbyshire and you would be considered quite young to begin a course of hydroxycarbamide if you lived here. As I say, 65 is the age when one suddenly needs to begin that.
Maybe there are other things in your blood test results that are pushing the consultant towards the drug regime. Feel free to ask him/her as many questions as you would like. It’s your life and your body. I have found that my showing an interest in the results, albeit a very simple, ignorant and inexpert interest, most of the consultants who see me are very happy to explain things to me and none of them are in the least condescending in their replies.
Take your time to make a descision. Don’t feel pressured or rushed into things. Now that you are being treated and your blood results seem to be showing definite improvement you can relax and ponder.
Lots of people on here have been in your shoes, We all react differently to PV. We all have our own stories to tell and our own answers to the problems that we have faced. There is no one perfect answer.
good luck.
I suppose that each hospital has its own guidelines and theories. I am in north Derbyshire and you would be considered quite young to begin a course of hydroxycarbamide if you lived here. As I say, 65 is the age when one suddenly needs to begin that.
Maybe there are other things in your blood test results that are pushing the consultant towards the drug regime. Feel free to ask him/her as many questions as you would like. It’s your life and your body. I have found that my showing an interest in the results, albeit a very simple, ignorant and inexpert interest, most of the consultants who see me are very happy to explain things to me and none of them are in the least condescending in their replies.
Take your time to make a descision. Don’t feel pressured or rushed into things. Now that you are being treated and your blood results seem to be showing definite improvement you can relax and ponder.
Lots of people on here have been in your shoes, We all react differently to PV. We all have our own stories to tell and our own answers to the problems that we have faced. There is no one perfect answer.
good luck.
Hmmm. I seem to be repeating myself.....
Old age.
Hi Sue, I'm in the US. You haven't told us what your other numbers are. Platelets, RBC, hemaglobin. Your hematocrit is very high for a woman they want it to be 42 or under. Phlebotomies would lower it, but raise your platelets. As far as the HU goes, the dosage has to be monitored quite closely, henceforth more cbcs. I couldn't tolerate it at all, only lasted 5 days. Everyone is different. There are some people who take it for years without a problem. You are young, so I can understand your reluctance. I think you need to have another discussion with your dr about the pros and cons before making a decision. Are you symptomatic? Itching, night sweats, ocular migraines?
Hello Sue,
I, like you, am 53 and was diagnosized with pv 1 year ago. Started with venesections for 4 or 5 months, as my hematocrite went down, my platelets were out of control (over 1 million) so my dr started me on Hydroxyurea . My numbers went down except for my White blood cells that grew too big. My bigger side effect was fatigue and some gastro-intestinal problems. I am now on Jakavi and life is good, no problem for now and all numbers are back where they belong. Ask your dr why he wants to put you on meds rightaway.
Marie
I was diagnosed with PCV ten years ago and had venesections for the first 6 or 7 years !
I was persuaded to go onto Hydroxycarbamide and I too was reluctant to take what is effectively a cancer drug, but since taking this, I have avoided further venesections and my HCT has levelled off - currently 40 !
I now only have 6 monthly appointments with the Consultant .
Angela too funny welcome to the club😔
Hello Sue,
As you will see there are different approaches to this PV disorder. Generally venesection is used to control the initial symptoms but it has limitations. Hydroxycarbamide will normally control the symptoms once the venesections have done their job. The problem with Hydroxy is that it is a much stronger medication to take with some unwelcome symptoms to combat, but platelets are a very important constituent of the blood and with good medical supervision these can be controlled with Hydroxy without recourse. One needs to be aware of the long-term use of this medication as it is a powerful drug and once its effects diminish can produce its own symptoms. However, it can really control PV and if medically supervised be an excellent treatment. I took this preparation for very many years before it reacted on me and I was prescribed a newer drug (Ruxolitinib) which has stabilised my blood count admirably. I would add that as a new drug its long-term use is not fully known. There are other medicines in the pipe-line which will eventually become available for use. The important thing is once Hydroxy is prescribed, to advise your Haematologist of any adverse re-actions, if any. This preparation better controls the platelet count of the blood which venesections are unable to do with the platelets forming an important part of the blood readings as well as Haematocrit. PV is a variable disease and its treatment individually prescribed depending on your Haematologists tests. It is also very rare and one of the group of illnesses defined within Myelo Proliferative Disorders (MPD's). You are obviously concerned about receiving this medication as well as venesections and I would suggest you discuss your doubts with this specialist who will control your future treatments. Dealt with correctly, you should look forward to a good and active life. You will note from this forum that some sensible advice is always available from like sufferers who will be pleased to assist you where possible. Best wishes.
Peter.
Hi Linda,
Yes, Angela is quite a card I agree but she does come up with some decent opinions. I was about to contact you on the other circuit but here you are so I will say that we have been snowed under here in UK which has kept us occupied. A thaw is already happening. This is the month of your hospital appt. Linda so I hope all is arranged and that you are ready for the moment. Everything here going along well with the Jakavi really making its weight. Very pleased so far. Any developments on the pegasus treatment ? Good wishes.
Peter.
Yes, zap, good luck with your treatment.
Peter must, I think, if I have got a grip on whereabouts he lives, have had worse snow than I have even though I am higher up and further north. But it only takes an inch of the stuff to send the entire population into a blind panic. I have been reading about Massachusetts’ weather woes and they seem much worse than ours. Still, spring must be on its way as the birds are all beginning to sing their spring songs. Happy days.
Hi Angela thanks for your good wishes. I live in New Jersey very close to New York City, about 20 minutes away. We had a storm yesterday with rain, sleet, high winds. Spring better spring soon, I've had enough. I haven't noticed any birds singing lol take care Zap
Hello Angela,
You are right about the weather conditions. Here in West Country we had no snow whatsoever until last Friday and then it all came swiftly with strong winds and that was it. With all the hills around this froze solid causing widespread disruption. Today it has with modest temperatures, started thawing. It is the ice that causes the difficulties here not so much the snow which will affect the moors particularly. I think it is the luck of the draw. I am just pleased I don't have to make the hospital at this time. I well remember April/May many years ago where I found 4-5 feet of it in N.Yorks. Hope you continue to stay well with your PV. I have found the Jakavi very supportive with good results so far. Still early days yet.
I do keep up with your forum entries - very good and particularly relevant where the ladies are concerned. Keep well.
Peter.
Glad to hear you aren’t stuck in a snowdrift, Peter.
I counted fifteen blackbirds outside the kitchen window this morning. Twelve male and three female. It’s going to be an interesting springtime when the hormones kick in.
It’s been thick white fog here all day. Which is quite good because it hides the snow. All getting a bit tedious now, not least the endless news items on TV about it. The slimos may have 150 words for it but there are only so many things you can say about water in its solid state, after all.
Good to hear that your treatment is going smoothly. Long may it continue.
SLIMOS????? WHO THE HECK ARE THE SLIMOS?
Eskimos, I meant. Apologies to the Eskimos.
Hi Angela,
Nice to hear from you again. We are almost clear of the snow now in my parts. Yes, slimos may be a new word but what the heck, there's enough of these around nowadays particularly with the modern young. With the broadcasters everything is overkill, I think we could do with a new word to describe them. I have also noticed the bird activity too, they are very early this year. Keep comfortable and healthy.
Peter.
Thank you very much for the replies. I am encouraged to take a bit more time and make sure that I get my questions answered. It is so encouraging to have a place like this where you can hear the experiences of others. Will let you know what happens as I continue to learn more about the condition and continue my treatment. Sue
Good luck.
It’s a confusing disease because it affects different people in many different ways.
As Peter says, it’s a rare disease which has only relatively recently been tracked down to genetics. Even the medical community is still learning.
However, we here on the forum all have something to contribute in the way of support, even so.
Let us know how you get on.