My platelet count is currently at 1450, it has been rising steadily over the months since I asked to try coming off hydroxy, when on it they were around 600.
I rarely get symptoms apart from the odd bout of fatigue.
I have recently got bloodshot eyes I can only describe it as having an eye that looks full of blood, it’s not nice to look at but doesn’t hurt.
I have never had this in my life and wondered if anybody else has.
My next appt is at Guys in July, I’m overly worried and will probably wait until then rather than call them.
I am 47 and had ET for around 10’years.
Thanks
Justin.x
Written by
stevenjust
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I also have problems with high platelets too Justin, and so far I have already had two (2) TIAs. TIAs are minor Brain Strokes but can cause irreparable damage to us and our abilities to be able to function normally. Worse, a bad one might even be fatal...
My advice Justin, please do not wait until July to take action... Because that might well be too late. I am not trying to be dramatic, however, a Transient Ischemic Attack (TIA), can be a very serious event.
Many believe that platelets over the 1Million mark do place us at a far greater risk of having a TIA. Hence, Please keep taking your med's at least until you have seen your specialist/medical team etc.
It is simply not worth the risk... I do not like HU either. However, because I could not tolerate it they placed me on other med's instead. Maybe that outcome is a possibility for you also... (?)
I would get eyes like you describe and no one could figure out why. I was sent to an eye specialist and then a neurologist and then even an allergist.
After I was diagnosed with polycythemia Vera Jak2+ and received treatment and then got my blood back in the normal range, I have never had it happen again. Clearly that was the link! Since PV is rare, esp at my age, no one ever thought to check that as a cause. So, yes, there is a link, and it happened for me when my blood counts were too high. Please call your dr instead of waiting.
Hi Justin, I had a similar red eye issue once, waking up with a completely bloodshot eye, for no apparent reason. It was attributed to the daily low dose aspirin I am on which can cause such a problem. Are you on aspirin? If so, it could explain it. Mine cleared naturally after a few days. However, bloodshot eyes can also be caused by very high blood pressure so it would be advisable to go check it out at your GP.
On the issue of raising platelets, you should be on some form of cytoreductive therapy if they are 1.5 million, so please do discuss going back on treatment with your haemo. Pegasys interferon is an alternative to HU. I have been on it for 3 years and 8 months for PV with excellent results. Good luck. Susana x
Hi Justin, I also get blood shot eyes when my numbers are high and I haven’t figured out yet if high WBC or Platelets cause it to happen . I used to get it even befor I was diagnosed
Hi Justine, I also have quite number of times bloodshot eye, and only just few weeks ago was the last one. It was suddenly and it was rather big one. My whole eye was covered with blood. I am with ET Jak 2+ patient and my platelets are in good range. I am on Pegulated Inteferon Apha 2 for last 5 years. I had this situation with bloodshot eye on occasion, even before I was diagnosed with ET and doctors could not figure it out. I can not help but wonder now since we MPN's seem have bloodshot, is it related to our illness?
Take picture of your bloodshot eye and go see hematologists at Guys now. Don't wait!
Sorry to hear about your eyes. I would reiterate the advice already given about contacting your hospital especially as it is worrying you. Like tifftriesit above I have PV. In the early days following my diagnosis, my platelets were too high and my Hydroxy dosage in a period of adjustment to suit my needs. I had then what I referred to as my all Halloween look. Sometimes when unaware, I would really surprise myself seeing my red-eyed reflection. Warm wishes and I hope it will soon be resolved for you.
Hi Justin, Yes I had a couple of bloodshot eye episodes 14 years ago which led me to being diagnosed with PV. I would have it checked out just to be on the safe side.
Hi Justin. This message came at exactly the same time as I have the same thing. I tried to find something on here but to no avail. I am on Pegasys and inject every 10 days. However, at my last visit a few weeks ago, I was told that my bloods were good and platelets were in normal range. So why not start dosing every 14 days. He then said it was probably too soon and said stick to 10. I have and yesterday, there went the eye. Exactly as you describe. It creeps others out but not me.
I have had this in the past but not since I have been on Pegasys, so I went up to the hospital and although my Haema wasn't available, another one suggested a blood test. today, I have had the results saying that everything is fine. My bloods are good
However, I have organised an appointment with an eye consultant. I'll let you know how that goes.
Basically, all I wanted to say was, don't worry about your blood. It may be nothing to do with it. we have tiny, delicate veins in our eyes, which are easily blocked and apparently, that is something that can happen with ET.
All the best and try not to worry unduly. I'm sending a hug for you to make you feel a little better. x
Considering how high your platelet count is you may have aquired von willebrands disease. It happens sometimes in people with platelet counts over a million. It can cause hyphema which is bleeding in the eye. Google it and you will see pictures. I agree with the others that you should talk to a doctor asap. Never ignore eye symptoms.
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