I am 62 years old and recently told I have Polycythemia however I do not have any symptoms. I do not have joint pain, itching, fatigue, shortness of breath, weight loss, sweating, blurred vision or bleeding from the gums. It was discovered during a regular 3-Month blood test, I have a history of diabetes in my family.
I don't get the flu or virus and don't take any shots. I don't remember the last time I was sick and neither does my mother.
My questions is, does this disease really come on list this and has anyone else started out this way?
Ray.
Written by
4beatles
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I have ET myself (too many platelets) and my mother has PV (too many red blood cells). I had lots of symptoms, but my mother had few. You will probably find quite a range of responses from people on the forum that reflect the diversity of experiences that people with MPNs have. Some are without symptoms, and others are affected so badly that they have to retire from work. Probably the most common symptom is fatigue, some of us also have some of the more "exotic" ones that were on your list, but it is definitely not a case of "one size fits all".
The good thing is that your condition has been discovered whilst you were feeling well rather than after a stroke or something dramatic like that. You don't say if you have seen a specialist or haematologist. If you have Polycythemia it will be important for your blood to be regularly checked even if you are feeling OK at the time.
Hope that you continue to stay really well and symptom free. I think most would say, eat healthily, do some exercise, keep up the fluids (particularly water!!).
My name is Louise and I have had PV for 10 years. I’m 64. I’ve buddied around 32 newly diagnosed PV patients ( all ladies!) via the buddy scheme set up by mpnvoice.org.uk
Just to give you an idea, I reckon I had probably had PV for around 7 years before diagnosis. The only inkling I had for around those 7 years were visual disturbances ( migraine like flashing lights and a broken glass effect)
My gp was unable to come up with an explanation ( she WAS fairly useless looking back over a 25 year association )
In 2009 I started with the most frightful neck and headache and itching.
That’s when I booked myself an FBC test.
Be thankful you have zero side effects. You were caught in time. Not all PV patients have side effects. I now have none at all either. If this hadn’t been picked up you may have rattled along for years and then possibly either had a stroke or severe side effects.
Quite a few of the ladies I buddy don’t have side effects either.
Go to the forums arranged or better still attend the patients day in November this year if it’s being held.
We have a saying in the mpn world, knowledge is power, and you need to be your own project manager, particularly if you don’t have a haematologist who specialises in mpns.
Any other other questions don’t hesitate to ask.
And don’t forget, the folk who post on this site are usually the people who quite likely are maybe not feeling well, or looking for support. For every one of them, there will be 100 who are absolutely fine!
Carry on with life. You’ll be absolutely fine, but do make sure you read everything you can, and please attend a forum or patients day. They really are worth going to.
Have you been diagnosed with PV (poycythaemia vera) which is Primary Polycythaemia caused by one of a number of gene mutations that cause you to produce too many red blood cells. Have you been tested for the JAK2 mutation? Secondary Polycythaemia, again causing too many red blood cells in your blood, can also be caused by a number of secondary conditions such as COPD, kidney tumours and even dehydration, to name just a few. This may cause no symptoms. As suggested, look on the mpnvoice.org.uk site where you will find a lot of helpful information. The route to diagnosis can take time but you have no symptoms this bodes well for you and I wish you all the best.
As others have stated on here we all unique individuals, sometimes with no symptoms, sometimes many. I also have Polycythaemia which was diagnosed three years ago. I visited my GP because he advised me to pop in after some physiotherapy. By chance, he happened to take my blood pressure which was high compared to my usual reading of low side of normal. I had no symptoms and was feeling fine and was very surprised to be diagnosed with polycythaemia following blood tests. Three years later, I still feel fine with minimal occasional discomfort, daily medication and regular good care from the hospital. I would also suggest that Louise's advice regarding attending a forum is really good. There is wonderful informative support available and I found meeting other lovely people with the same condition really beneficial.
I am 73. Exactly what happened to me. I had slightly high HCT of 49 for the last 8 years, maybe way longer. No doctor even mentioned it to me. Then last November, boom, I had a few weeks of feeling tired and a bit unfocused, had a blood test and my HCT was 57 and climbing. I have a little itchy skin when coming out of the shower and my feet are a bit purple at time- none of which even raised my attention until my hematologist asked about this. So, Yes what you are experiencing is not unique.
Thanks to all who responded, I really appreciate the comments. I seen a Hematologist/Oncologist first time last week. As of now my blood test results are not high enough to warrant the more elaborate tests however they will be removing a pint of blood this coming week and the next week and then more blood test.
I am surprised at how hard I have to work to drink the amount of water needed. I think this forum is going to help.
Hi, You are lucky. I was same apart from headaches and itchiness prior . Mostly cured now after 5 years and monthly venesections.Just shows that things need not be that bad. Do lose the blood though. If not you will blow up like a strawberry and die eventually.
Hi Ray, I am 57 and diagnosed at 51. The only symptom I have is the itchiness which is annoying. It doesn't last long and I can make it go with a 30 min brisk walk! Seems to be brought on with a change of temperature in the mornings. I don't have fatigue or any of the other symptoms. Feel perfectly healthy, have a good diet and life style. I am on daily 75mg aspirin and have the occasional venesection. Just hoping it stays this way. I try not to obsess about it now, although it was a real shock on diagnosis because I never seem to be ill or catch anything and my view of myself was changed somewhat! Best of luck.
Hi Ray I'm 66 years old and was diagnosed with PV last December spotted during a routine blood test for psoriasis and psoriatic arthritis. Absolutely no symptoms at all, Had a blood test the year before and all was absoltuely fine so crept up in one year. I have joint pain because of psoriatic arthritis and I was being prescribed a drug that required blood to be taken before starting the medication. Erythropoietin was in my boots too so might help to know about that hormone. Have you been tested yet for the mutant gene? I am JAK2 positive Exon 12 so it might help for you to find out if you are JAK2 positive. This helps as you can then research your condition fully, I found I was more accepting once I had done some investigation. I hope this helps.
Also have Polycythemia, but mine progressed (about 6 years ago) from Essential Thrombocythemia that was diagnosed over 30 years ago. My Oncologist/hematologist did not recognize the progression until about 6 months ago. The only symptom I ever had was hypertension. Once I started the phlebotomies, my BP went from average 135/95 to 115/75. Be sure to consult with an MPN expert - not all docs are. FYI - my new MPN specialist doc is checking the JAK2 Mutant Allele Burden. Chances are mine re low - thus better prognosis. Hope yours is as well.
At Dec'2010, I have treated for Polycythemia when my PCV was 56 but I am not having any symtoms, Mutations.Spleen, heart and lungs are normal.
I am taking asprin 75 mg only and no symptoms by god grace.
In between 2011 to till now, I going for venesection when my PCV cross 50. It may be once in year or twice. In this period most of the time my PCV returns from 50 to 45 or 46 and don’t know the reason
In last 2 year, I gone for venesection 2 times only. After 1.1 year, I gone for venesection 500 ml on 03-01-2019 when my PCV was 51.7. at that time my Hematologist said, My PCV will be reduced to 48.7. But I refused, every time it drops to 6 to 7 point. He is not accepting.
On 16-02-2019 have checked my CBC. HB 15.1, PCV 45.9, RBC 5.33.
Again checked on 15.03.2019 my CBC report is HB 15.1, PCV 44.8, RBC 5.18.
I think research is very less, since Polycythemia affects 1 or 2 in 10 million people.
Hey we live in the USA. mY HUSBAND is 58 and his hematocrit is 58. His hemoglobin is 20. Been this way 1.5 years. VA doctors & outside oncologists still dont know why. Jak2 & Polycythemia vera negative. Lung ct scan all okay. negative. What are your numbers?
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