Elevated platelet
Posted , 7 users are following.
I was diagnosed with PV in July, since then Ive been getting plebotomies which has been helping my levels. This week I was told my other levels are still good but my platelet count is high. Im such a newby and dont have my doc appt for 2 weeks, so a few questions for you all:
1. Can you manage platelet count anyway other than drugs (really want to try to avoid)?
2. Any idea what causes the increase in platelet count? Thought I read somewhere the phelbotomy can cause a temporary increase in count.
The doc is only recommeding the drug and I feel like they have been pushing it the whole time. Id really like to explore and know if I have other options.
thanks!
ray
0 likes, 8 replies
angela_o..o rayrayfl
Posted
Hello,
I could have written that!
Apart from the fact that I was only diagnosed this spring, it sounds just like me.
The reason that the platelet levels rise is this. Platelets act as a sort of plug or sticking plaster. So when your body suddenly loses a pint of blood it panics and sends platelets out to fill in the unexpected gap.
I am holding out against the drugs too. My reasoning goes that the drugs slightly increase the risk of you getting cancer whereas the phlebotomy and aspirin alone don't help to reduce the platelets so you are more at risk of having a stroke or a heart attack. As everyone in my family has died of cancer but nobody (yet) has died of a stroke or a heart attack, my money is on the latter.
rayrayfl angela_o..o
Posted
Ive been looking into maybe using foods and herbs to lower platelet count. Any chance youve tried this? Im wondering if there would be any success with that (have to image it could help, but would love to hear a success story!)
angela_o..o rayrayfl
Posted
Ha ha, if it was just a case of eating certain foods I am sure that the doctors in the NHS would have saved themselves a bob or two and recommended that.
For what it's worth, I read that quinine though used historically to relieve the effects of malaria was discovered to have a strongly negative impact on platelet production in people and it was thought to be quite a dangerous substance in the past for that reason. Whether quinine would have the slightest effect on us whose bone marrow is running riot and deaf to all argument I don't know, but I have taken to drinking a bottle of Fevertree tonic every evening in place of the glass of wine I can no longer have.
Other things that are said to keep the platelets moving along and not loitering on corners are dark chocolate (see favanols) and sesame seeds. I find it little hardship to eat a bar of Lindt 99% choc every day and I could eat tahini till the cows came home so I might as well enjoy myself even if the science is a bit dodgy.
keith28441 rayrayfl
Posted
50% of people that have Primary Polycythaemia have raised platelet counts so don’t be concerned if they continue to rise steadily as your Haematologist will monitor this and take appropriate action as needed. For example, mine started out at around the 480,000 mark and now they are currently at 679,000. Phlebotomies will impact on your Ferritin (iron) levels and this may be temporary however, they are often low in primary polycythaemia because of increased demand for iron. Mine are currently at 3. Many of us on this forum that have primary PRV have low iron levels. I have until now, managed with Phlebotomies alone but recently my Haematologist discussed putting me on Hydroxyurea however, the hospital review panel (that unbeknown to me reviewed my case a few weeks back) has said I need to go on interferon alpha injections instead due to my age. Apparently, they believe I am too young to go on to Hydroxyurea. The reason for wanting to put me on any form of myelosuppressive drug is that they consider I am at high risk of clotting. I did suffer from multiple pulmonary embolisms in 2008, long before I was diagnosed with PRV and this was apparently a factor however, other reasons were that my red blood cell count is still way too high as are my platelets even though my Haematocrit and Haemoglobin levels are under control. So for me there are a number of contributing factors that led to this decision although I have to say I am not too keen to start this drug. I am due to start it week after next but want to discuss it further with my Haematologist before making any final decision. What I would recommend Ray is that you ask your Haematologist as to why he/she is so keen to put you on any drug and then make an informed decision. Not sure of your age but from what I understand, people over the age of 60 are considered high risk of clotting and therefore they tend to want to put people on these types of drugs as a matter of course.
Hope this helps
Kind regards
Keith
rayrayfl keith28441
Posted
I am 69 years old. After I was diagnosed and started with the phebotomies my platelet count was around 350,000, now about 2 months later its over 600,000. The phlebotomies were helping my Haematocrit and Haemoglobin levels, which are now in range, but of course then my platelet count started climbing up. They are now recommending I go on Hydroxyurea. I guess maybe my age puts my in a higher risk category. I will talk to my haemotologist about all this at the next appointment, but its looking like these platelet counts arent going to improve any other way unfortunately...
Zapamania rayrayfl
Posted
Hi Ray my plates started @ 490 4 yrs ago and now have hit a million. I tried Hydroxyurea but I couldn't handle it. Too many side effects for me. So now I'm on Jakafi the side effects are more tolerable. Good luck with your decision. Linda
peter98873 rayrayfl
Posted
Hi rayrayfl,
Treatment for PV is by either venesection or drugs. Both have their disadvantages and advantages. You mentioned that your doc is pressing you on this. Have you been referred to a haematoligist, or just seen your GP?
There are a number of drugs available to treat you, the main one being Hydroxycarbamide. The long-term effect of this drug needs careful monitoring as it is a cytotoxic preparation and normally prescribed by the haematologist. It has some unwelcome side-effects but then, so do many other drugs too. Venesection is an ongoing treatment performed in the hospital at fairly regular intervals.
If you haven't already done so, look at previous postings on this site and you will discover the vast amount of information supplied by other patients with PV on just about any aspect relating to this disorder. Whatever route you decide to take, just bear in mind that if untreated, PV will cause you difficulties. Be guided by your haematologist who is best placed to deal with your case and advise on what is the best way ahead for you. Every patient is differently affected and the same treatment is not necessarily right for each sufferer of PV. It is a progressive and rare disorder that needs professional supervision. There is no cure but effective treatments are available. I have been treated for many years now with drugs as the normal course of treatment for me.
Hope this helps. Good luck.
andrew45678 rayrayfl
Posted
Hello Ray,
Sometines people with PV have both high hematcrit and high plateletts, sometimes just high hematocrit. I've done a fair amount of searching on-line and have never been able to find anything other than drugs that will help keep platelets down. That being said many haemotologists (but not all) like to try to keep both your hematocrit and plateletts close to normal. Phlebotomy works pretty well to keep hematocrit in range, but doesn't do much for plateletts. But there seems to be a good amount of research that shows that a high level of plateletts (as long as it's < 1.5 million per microlitre) has no correlation to increased risk of blood clots. High plateletts may however increase the risk of bleeding. My own feeling is that I'm not eager to take drugs (most common is hydroxyurea) if phlebotomies control my hematocrit and I don't have any terribly bothersome symptoms. I do take baby aspirin to also reduce the risk of clotting.
The choice of drugs or not is also dependent on your symptoms and your risk level - high if you have had any history of blood clots or if you are > 65 years old.