Quick move to hydroxy - should I wait for venesection effects

I think a lot of how we feel physically depends on our confidence in our course of treatment and in those who are treating us.

Our bodies are all different and our experiences are all different. It would be a dull old world if we were all the same, though I am sure it would make the doctors’ lives simpler it were so. I am glad to hear that you have found the correct course of treatment. It can take a while. 

You seem to have trodden a well established path to reach your current situation.   The symptoms you have felt are quite usual in the circumstances.  Would suggest you do not forget to pass on any symptoms you suffer to your Haematologist and this is particularly important when using Hydroycarbamide over a lengthy period.  I have frequently suggested to people to seek the booklets on PV etc because they are regularly

updated and very informative.  Most Haematologists can provide these especially at a hospital.  Any illness you suffer when on these drugs should be notified as one or two serious matters could affect you without you really understanding the problem.   I know from personal experience.   Stay well.

Peter.

Hello Sue,

You seem to be approaching this problem very well.  My view is it is best to let the Haematologist do the worrying, just give him/her all the facts and symptoms to think about.   PV is a serious disorder with numerous variations to consider.    It is a long term illness to contend with so just don't take your worries with you.   By all means learn of things as you go along and adapt as necessary.  Because the disorder is so rare it's unlikely you will come face to face with another sufferer unless your clinic is in a big hospital.   In all the time visiting my hospital I've not yet come across another person with PV or indeed any MPN disorder but I believe there are now one or two about in my hospital's remit.   The haematology department have been massive for me.

That's where this forum is useful.  Best wishes.

Peter.  

Apart from your having had a bone marrow test, you sound exactly like me.

You say that your haematologist “had to agree” with your decision. Is there was a degree of friction in your relationship with your haematologist? Your haematologist is an expert in their field. You are the mistress of your destiny. I have been in a similar position as yourself. I too only take aspirin. I too have a haematology team who feel that I should be taking their advice to take hydroxycarbamide because of my age (66). But I don’t think that they exactly “had to” comply with my wishes. I have a very good relationship with them all.

Am I right? Who can say. I don’t know if I am “right”; I only know that I am doing what I feel is best for me. I could be completely wrong and end up paralysed by a stroke which maybe would not have happened if I had taken the drugs. I do know that if I took the drugs, however efficacious they turned out to be, I would “feel” ill, I would “feel” like I am living in the Land of the Unwell whereas on a day to day basis I feel fine just now.

There really is no correct answer to your question. You can only do what you think is right for you.

Best wishes.

Thank you very much Angela for your balanced and honest response. My hematologist claimed that medication was needed. I feel, just like you wrote. I feel great and I have no symptoms. Bone marrow testing was also moderate. Given my attitude and the results, she agreed with me, of course, without any friction.

I'd love to hear about people in a similar situation. What has evolved over time. Even if someone has found that a particular diet may help. What about omega-3 (in addition to aspirin)?

This disease is like the mythical chimera. Although the basis of it is an overabundance of red blood cells, some people have too many platelets as well and some have trouble with white cells.

In my case, the platelet numbers are high. I have, for my own amusement, adopted a diet which has been medically proved to reduce the number of platelets in normal people. But we are not normal people. My platelet numbers have stayed at the same-ish level (not nearly as high as they used to be) for some time. I have no idea whether my diet has contributed to this or not but I continue with it because it agrees with me.

If you decide to try something out, make sure that you base your ideas on scholarly articles that you find online. Don’t listen to fads, fanatics and fools. Read only what the medical profession says. Above all, eat and drink things that you like. No point in suffering twice over, once with the disease and once with the thought of what awaits you in the fridge.

Hello Rivka,

Of course, you should always be in control of your own destiny and particularly where your health is concerned.  Perhaps you need to know that PV was first discovered about 150 years ago by some researchers in S. America (I believe Mexico) when a paper on the disease was first circulated.  And so it remained until 1920's when it was again made aware of in UK.  In more recent years it has gained more prominence and just 15 years ago the Jak2 gene was identified by researchers in US who have since carried this forward to the present situation.  PV remains a rare and serious illness and because of this there is still much for the medics to learn about.   The treatments available for them to use are limited in comparison with most other illnesses.  Within the past few years some new drugs have been formulated to deal directly with PV (and other MPN's) but they remain limited in use, often because of price restrictions and the absence of long-term knowledge.  Prior to these new offerings and treatments the existing treatments were formulated to deal with other different disorders and were used to treat PV as a best available treatment.   The doctors can only recommend what is available to them and what they know of the treatments and of the disease itself.   Generally local GP's are not too conversant with these MPN disorders for they will lose contact with the patient who will will be referred to a Haematologist for appraisal and then treatment.  I well remember my own Haematologist receiving me at my clinic appointment and waiting eagerly to inform me of the then breakthrough with the Jak2 discovery which has now led to some new medications being introduced for PV etc.  So try not to be too dismissive of what is on offer by the doctors but any treatment must of course be agreed with you.  You are ultimately responsible for what you take and will obviously have an opinion on the matter.  Give careful consideration to any treatment, for each patient is different and has different requirements.  Remember, your Haematologist is the specialist for your illness and will try their best for you.   As with many other complaints a particular medication or treatment may be found unfavourable or difficult to use in which case there are now more offerings available but still in limited supply.  I have suffered immeasurably from certain medications relating to PV but always found the Haematologist ready to react with some other treatment.   It isn't always easy but I remain in relatively good health.  Keep well./

Peter.

Aspirin is a chemical which makes your platelets more slippery and less likely to clump together, form a clot and bung up one of your blood vessels giving you a stroke or a heart attack. It does nothing to address the fact that your bone marrow is churning out blood cells like a nuclear power station with a broken “off” switch. 

So you need to think about what the results of this process which is not being addressed. Without any treatment, your blood cells will contine to be generated and your spleen will have to work extra hard to try to remove them. Your spleen will grow in size. For the consequences of having an enlarged spleen you can consult doctor Google.

Your veins will become stuffed with blood cells, become more sludgy and thick and unable to be pumped to your extremities. Your fingers will turn cold and blue. You may get gangrene.

I don’t know what more may befall you if you do nothing other than take aspirin but it won’t be good.

At the very least you are going to need to have regular venesections in order to have some of the excess blood removed. This will reduce all your readings apart from the platelets, which will rise a little after each venesection because they are trying to block the damage done to your body by the “injury” of the venesection.

HI Rivka,

I think Angela has defined your problem very well indeed,   PV is a progressive disease and you will find that treatments will be adjusted as you go.   For this reason differing medications will be used depending on the stage of your illness.  It is up to you to accept or refuse these but please remember that there isn't  much available for the doctor, he will have do a juggling act.  Initially venesection will control things suitably but there it begins and ends for after this it will be Hydroxycarbamide that will be used to control  the platelet count and haematocrit level.  These are important and will need regular scrutiny.  Ask your Haematologist for any medical advice on these points.  Values will go up and down depending on several factors as with any illness but as long as the counts are managed well  this should not prove a problem.     PV can be diagnosed at a very early age but it is usually more prevalent as you age.  It seems that 60 years is a guideline for the majority of patients.  It is how the disorder is dealt with once found.  Currently it is incurable but with way treatments are being introduced and the ongoing research into the problem things can change.  Since I was first diagnosed there have been several noticeable improvements that have produced good results.   As I have said, if you are unsure of anything the best person will be your Haematologist.  Good luck.

Peter.

You may already know this but I will point out that PV is recognised as a genetic defect which you are born with.  In most cases it will not manifest itself until one is into middle age which is when the majority of patients are diagnosed.    The earlier one is diagnosed the more difficult it can be to treat long-term

However,  there is no evidence to suggest that the disorder is of an hereditary nature or that it can be transferred to others.    Take things as they come, and you will recognise that it can comfortably be lived with using the controls available.  Maintain a sensible diet and exercise as you can as this can also help.

This forum is readily used by others who can always offer helpful advice.  Best wishes.

Peter.

Hello Peter

I wonder what you're saying. My doctor says it probably started now. I thought differently. Maybe it was just discovered now. I remember that I had always had a viscous blood that made blood tests difficult. No one thought it meant anything. 40 years ago, when I was pregnant, I had a placenta separation, with sad results.No one thought it meant anything. Hot showers also caused redness and a bit of itching. So I thought'if it was there'and if there is a progress, but it is so slow, it is a pity to take aggressive drugs.

Can you refer me to appropriate updated  articles?

Thank you

?Rivka

Hi Rivka,

Thanks for your message.    Little was known about PV before the defective Jak2v gene was identified as the cause of PV about 15 years ago.  Since then research has taken the issue much farther and introduced some useful advances of knowledge and treatments.    Many patients have no signs or symptoms for many years but as time passes, these will very gradually increase but it is not unusual for these symptoms to be noticed and disregarded by patients as of no consequence (as did I).  Once the symptoms become more obvious and begin to take effect that is when medical advice is generally sought.  PV and MPN'S are progressive disorders commencing with the defective gene, which is very often not identified until much later in life and when it is becoming most prevalent.  It is when the disease makes itself more obvious that a diagnosis will likely be made.  The disease can be identified at a very early age but this is unusual.  It is in middle life that it usually manifests itself and when treatment commences.  The symptoms first noticed are the itching and possibly gout with perhaps skin discolouration (redder).  Males are more readily affected by PV than females.  It is because of the rarity of these MPN disorders that it took so long for them to become realised as serious and gaining attention.

Many general doctors know only basic details of PV and the treatments used because once the illness is identified the patient is referred to the Haematologist who will thereafter test and treat the patient.  It may be a little different outside UK where medical practices are often different.  If you would care to visit the sections available on this Patient web-site you are now on there is a great deal of information to be found which answers many queries,  There are different web-sites that can be used but make sure that these are properly medically produced and amended when necessary.  One can often obtain official 

booklets from Haematologists which I found very useful in discovering what these diseases represent.  From what you have explained of the history of your PV I would suggest that it is the defective gene at birth that is the source of your PV.  It is not known as an hereditary disease or transferrable.  Gook luck.

Peter.

Happily, I live in Israel where there is good and accessible medicine. My hematologist is in the ward of a large, advanced hospital. Still, as a person who has been informed that he has a serious illness, I want to be as sure as possible that I, along with the hematologist, make the decisions that are right for me personally, and not only according to the protocol.

Highly appreciates your knowledge and patience.

Rebecca

Highly unusual to hear from a patient in Israel.  I know your medical system is very efficient and that can only be good for you.  The rarity of PV is said to be 1 or 2 in 100,000 people but these things can vary but not by very much i would add.  You are most certainly correct to take a deep interest in your plight as it assists your understanding of PV and the treatment offered.   This is a personal issue and should be formulated just for you on the test results obtained as these results are personal and should remain so.

As I pointed out earlier PV is a very variable disorder and symptoms often differ between PV patients.   Each patient is an individual and needs to be treated as such.  Your Haematologist will be your greatest ally and you may find it difficult to come across another person with the illness due to its rarity value.

Keep well and I hope things progress kindly for you.

Peter.

Keep well

Dear Angela

I wonder why I was not recommended to do venesection.

?I am glad about it  ?ecause I have trouble finding veins. They are thin and deep.

I'd also like to hear about the diet you mentioned/ thank you and be well/

Rivka

The strange combination of things that I eat and drink aren’t a diet exactly. I eat a normal range of foods although I am a long-term vegetarian and I no longer drink alcohol.

The additional things that I eat and drink are designed to lower the number of platelets that I produce. You don’t say what your blood readings are so I don’t know if your platelet levels are high.

In any case, I would never recommend that anyone else adopts my approach. I am not medically qualified.

I don’t know why your doctor has not suggested venesections. You could ask and let the rest of us know.

my platelet levels are? o.k (248). ill ask about the reason of not recommending  venesections (just to learn) in my next appointment in 4 month.

?I heard that omega 3 can be a blood thinner. I don't know if its good with aspirin. do you know some thing about?

thanks

Rivka

I am just back from the hospital chat and although my haematocrit has gone down to the magical 45% (from nearly 60 two years ago) my platelets have continued to rise and are now in the mid 700s. So much for my fancy “diet”. But I shall go on with it because I like it - even though it hasn’t done me much “good”.

In the waiting room I met another woman with polycythaemia! We shook hands like comrades in arms.

I feel fine for 99% of the time. I only really notice that I get out of breath when I walk uphill these days. In the past I used to be a keenwalker and could almost run up hills. Other symptoms such as itchy skin are fleeting -maybe a few days. That is why I am so reluctant to go 9nto a regime of daily hydroxycarbamide. The doctors say things like “you won’t notice many side effects” to which I reply “but more than I notice now?” and they say that they don’t know. So I say that I am fine feeling fine, thanks, and I’ll leave it at that.

By the way, which part of Israel do you live in? When I was a student, about a hundred years ago, I worked for a summer on a kibbutz near Megiddo. I’m not Jewish, I just fancied it. It was quite an interesting experience.

Peter.

Hello Rebecca,

I visited my Haematologist just 3 days ago for the 4-weekly tests.  I should point out that my PV about 2 years ago progressed to MF which is also one of the disorders within the group known as MPN's 

(Myelo Proliferative Neoplasms) and to which PV belongs.  The results of my visit to the clinic were described as very satisfactory.  The medication I now take is Ruxolitinib (medical name) and Jakavi (manufacturers name) and I have used this medication now for 3 years.   Prior to this I was prescribed Hydroxycarbamibe which I took for a very long time which had become a problem for me due to adverse reactions.  At the time I was participating in the medical trials for Jakavi in UK which were also being conducted in other parts too.  My consultant Haematologist stopped the Hydroxy... treatment and obtained authorisation for me to take Jakavi.  You will gather that this is a new medication and not yet universally available for prescription.  The results have been absolutely positive so far with my blood tests returning to normal.  As a consequence I now feel very well and no symptoms.  Jakavi will also be a very expensive drug to obtain or prescribe.  It's long-term effects are unknown.  There are other similar type medications becoming available mostly in US where much of the research is conducted.  My supplies are from UK-NHS so for me cost is not an issue.  My view is that Hydroxy... if probably well supervised, can be a useful treatment for PV etc.  This medication was initially formulated to treat other disorders and still is.  It was always considered a "best available treatment" for PV as so little was known medically and otherwise about this complaint.  It still holds a place in PV treatment but unlike Jakavi, is not specifically directed to treat PV etc. which of course Jakavi is.  My condition slowly improved over about 18 months following my introduction to the new drug and seems to have stabilised with my continued use, without negative effects.  It should be stressed that different drugs will and can have different effects on those that use them.  With good medical control PV etc can be used over a lengthy time and should allow one a normal life span.  My medics agree.  The best requirement is to lead a healthy life, good diet and exercise, careful treatment regime and some trust in your medical advisers.

It has worked for me.  Sorry to elaborate but it might save you needing more enquiries.

Take care.    Peter.