Quick move to hydroxy - should I wait for venesection effects

Good to hear about the improvement in your situation.

We'd love to know that it will continue for a long time.

I think that because the detection of the mutation jak2 is relatively new, before that, they could not detect the initial conditions of the disease. I was in the hematological surveillance for something else. When nothing was found, at the last session before the cessation of follow-up, the doctor suggested the mutation test because hemoglobin and hematocrit results were slightly higher on the border. She was so surprised to find a mutation that asked me to do the test again, maybe there was a mistake. After the second test confirmed the mutation, she wanted to start treatment.  I did not agree, and we "compromised" on the bone marrow test, which is the test that you can verify exactly. The results of this test showed moderate interference. So we decided to wait with the drugs, apart from the aspirin, and continue our follow-up?.

I was very worried that the bone marrow test would hurt. But it was not terrible. A bit like root canal treatment ..It was worth knowing exactly what the situation was

Sorry you suffered a bit with your bone test.  Over the years I have had quite a few and never experienced any discomfort.  Were you not offered a painkilling injection before the procedure took place?  This is normal procedure in UK and US.

Peter.

Yes. they used painkilling injection before the procedure took place.

​May I ask how old are you Peter? you seem to have gone through a lot with this P.V

Hi Rebecca,

As I have previously mentioned I was 1st diagnosed with PV some years ago and then realised how I had been getting the symptoms long before this.  I have progressed since then with the disorder and am now into my mid-eighties.  I have always maintained an active and healthy life-style and still do, together with a sensible diet.    When I was first diagnosed very little was known about PV etc and I determined to learn all I could about it.    That's why I am able pass on details to others.  I also converse with the Haematologists to keep up-to-date.   Yes, I have suffered with PV and some of the medication which has not been easy at times.  The progression from PV to ET to MF was painless and just happened without thinking about it.   I would say that my biggest problem came from the very extensive use of hydroxycarbamide and the symptoms it raised.  The Jakavi has set most of that right now and as I previously said, I feel pretty good and back to normal with my blood tests very stable.  If you are prescribed Hydroxy... it is not to be feared, just ensure it is well supervised by your medics and that an increase in dosage over a long time can affect your symptoms.  By the time this might affect you I am certain other medications will be available for general treatment such as Jakavi successfully has done for me.  PV is a variable illness and will not be the same for all.  Everyone has their own biological pattern.

Hope you can understand this.  Best wishes.     Peter. 

Peter, thank you very much for the detail. It helps to understand, and to maintain optimism.

I wish you many years of good quality of life.

Sorry for the digging. But since you mentioned respiratory problems, as related to a type of P.V I ask if anyone knows about any conection of P.V with the problem of sleep apnea​ (Which I also have​)

Hello Rebecca,

Thank you for your messages.    Yes, sleep apnoea has often been discussed on this site and been said to be associated with Polycythemia etc.  I would say that I have never experienced this problem personally and I gained the impression, in some instances, that apnoea treatment had been usefully conducted and used successfully.    Obviously it is a specialist treatment and I seem to recall that once the apnoea was medically dealt with, the PV was no longer a problem.   I will not be visiting my Haematology clinic for another 3 weeks but I will make a point of asking a few questions on this subject for an expert opinion.  If by then you haven't come up with any firm conclusions I will pass on any information I may have.  My hospital  is classed as a teaching hospital and maintains a large Haematology presence from which I have greatly benefitted.  You are now understanding the complexity of PV and how each patient needs individual attention.   I wish you well.

Peter.

Peter, I'm so glad I've arrived, quite by chance for this forum, and I can ask and talk to people who knows and can understand my situation. In addition to meet   your kindness and desire to help.

I was diagnosed two years ago with sleep apnea, and I am treated with CPAP which is very helpful. And only now, two years later, is the diagnosis of  the P.V.

Thanks for your suggestion to ask for me what is known about the relationship between the two. I will wait patiently for your reply.?

hope you will get good news for yourself.

Rivka

Hi Rivka,

When I first encountered PV very little was known of it and this forum was not obvious, if it existed at all.

So you have been fortunate to be able to have somewhere to refer to for information.  Were it not for my hospital haematologists I might have been out on my own.  They have been very helpful in every way and treated me as one would have hoped.   I have learned much over the years and am happy to pass on any useful information that helps.   I know that other PV sufferers using this site will always help when 

needed.  Take things as they come, think it all through and you will become more relaxed as time passes.  Very often matters are not always as bad as they seem.  PV is very treatable with the proper

medical care.  My condition has been stabilised for 18 months now and with a bit of luck I should continue  to hold my own in the future.  In fact I would say that there is probably a good chance that the progression has been halted.  Stay in touch and I will let you know in due course what the opinions are with apnoea and PV.    Stay well.

Peter.

Hello Rivka,

I visited the hospital clinic yesterday and managed to raise the question of Apnoea and PV.  It was stated that PV does not create or cause difficulties with Apnoea.  However, the reverse is not the case.  Apnoea is a complaint of the respiratory system and is usually found in patients that smoke or are exposed to other environmental factors.  It is a disease affecting the lungs and heart where these are unable to extract a suitable oxygen supply from the blood.  PV has no direct correlation with this process and is not said to be a cause of Apnoea.   Treatment for polycythemia will not deal with Apnoea but treatment for the latter can reduce the effect it has on PV which is caused by low blood oxygen such as is found in the above mentioned illnesses.  PV will over-produce the red blood cells to make up for any lack of oxygen  it needs.  Further PV can produce symptoms that are found with sleep apnoea but they do not create the complaint.  Secondary PV can be prevented if the Apnoea is successfully treated.  Factors for sleep apnoea are smoking, inhalation of carbon monoxide and certain chemicals.  High BP and diabetes are contributors too.  Both PV and Apnoea are found by testing the red blood cell count.  The oxygen carried by these red cells is really a key factor for reach require a suitable supply to maintain a healthy circulation.    There is much more that can be said in this aspect but I will refrain from entering into the domain normally dealt with by doctors.  I hope this can provide the answers you need.  I wish you well.

Peter.

Hello Jim,

So you are a fellow sufferer from PV.  You are not alone.  I would say that Hydroxy is almost certainly at the base of your problems.  I have been through all this myself and after many years of using this medication I was forced to stop taking it due to some very severe side-effects.  At this time I was a participant in the medical trials for Ruxolitinib (Jakavi) and my consultant arranged for me to be transferred onto this new drug.  I could no longer stand Hydroxy.  Since then I have improved measurably and my blood counts have returned to normal.   As for using Ruxolitinib (medical name for Jakavi) I was fortunate inasmuch as I was still taking part in the trials and It certainly helped my consultant to get the necessary authorisation to be prescribed this.

i can tell you it is a very expensive drug to prescribe.   There is certain criteria a doctor must fulfil and one of these is that Hydroxy can no longer be of any benefit to the patient and needs different medication.  I am not sure of what else applies but there are several other factors too.   Ruxolitinib will have to be fully justified before authorisation is granted.  Once this has been agreed by NHS and NICE then things will go ahead.  So it really depends upon what your consultant can sort out for you.  I am  not sure whether 2 years with PV meets the detail needed but you can but try.  I wish you well and hope your suffering eases.   Hydroxy is much better at controlling your platelet and haematocrit counts than venesection which cannot do this.  It may be you have been given the two treatments to cover all aspects.  Let me know how you get on.  I have been on Ruxolitinib now for over 3 years and it has been excellent for me.   Best of luck.

Peter.