I had a very traumatic venesection a week ago today (23 April). They tried 3 times and each time my veins gave little before they blew. They then tried a 3 way cannula, which was also unsuccessful. They could only manage to get 280mls, far short of the 560mls they needed to take. Both of my arms are now badly bruised. I was well hydrated and both arms were warm, so I have no idea why it happened.
My right arm is now very painful when I outstretch it or carry anything... The pain is like an electric shock, which travels from elbow to wrist. It's a strange sensation!
Has anyone else ever had this? Will it get better as the bruising fades?
My HCT was .52 at the time, hence the reason I needed a venesection, so I'm now feeling like rubbish, with bad PV symptoms. There was talk during the appointment about starting hydrea - my haem said to think about it and we'll discuss it further at my next appointment on July 2nd. The traumatic venesection is making me think that perhaps it will be a good idea...but, I'm reluctant and really worried about the side effects of medication.
Well, I've had my Monday moan - so I'd best get ready for work.
Karina.x
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Kari1961
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I had PV for 12 years now and been on Hydroxy for the last 5 years with no side effects whatsoever. I usually have a venesection once per year. Please don’t be afraid to try it.
Really sad to hear about your problems with venesection. I wonder if your blood is still thick? Mine wouldn't run when I started treatment, but I haven't actually had problems with venesection. The haematocrit needs to be kept below 45%. I had a small heart attack because my haematologist in Spain didn't want to bleed me too fast, but I think that was a mistake. I take an increased dose of Hydrea now, 3xday, never had any problems apart from occasional mouth ulcers and I have a gel for that, they soon go. My haematologist in France is very keen on keeping the haematocrit low and also control of white blood cells, I think he sees it as more beneficial to use Hydrea than too many bleeds which can lead to weakness and exhaustion. Hope this helps. Good luck!
I feel you! I cried the first time I took Hydrea. I tried to manage my counts through venesection only, but I became so iron deficient, it affected my heart. I am only 41, so being on Hydrea long term doesn't excite me (diagnosed 5 years ago), but to be honest, I have completely adjusted to it and have zero side effects (I had some in the beginning, but they subsided). I now venesect once or twice a year which I prefer. Far less traumatic!
I do take outstanding supplements and I make sure I look after my body's ability to detox the chemicals and I take good care of my immune system (whilst still drinking wine and having a life!).
I am currently at the top hematologist in our country and he says that Hydrea is one of the safest, best studied forms of chemo.
Thank you Jo. I'm so grateful for your reassurance.
I'm not a crazy 'party animal' but still enjoy a glass of wine occasionally after work or when socialising with friends and family. I like to think I live my life with a good balance of 'health' - good balanced diet, lots of water and walking everyday for exercise, and 'well being' - enjoyable nights out, having a drink or two and having the odd naughty weekend of eating nothing but junk food and watching Netflix!
I'm also self-employed, which is great in one respect as I can manage my work day according to my PV symptoms and hospital visits. I am very lucky as my clients' know of my PV.
What I can well do without is many months worth of exasperated symptoms due to new medication. After last weeks venesection and continuing pain I'm beginning to realise that Hydrea may well be a blessing.
Hydrea was recommended to me by Dr. Verstovsek at MD Anderson in Houston, Texas. I was on it for 5 years with good results for my CBC, but it did not control my itching. I have recently started on Jakafi, very expensive, and it does control my itching, but does not do as good a job with my CBC levels..
Thank you. I've recently been prescribed Cetirizine for the itching by my haem. So far, so good! My itching didn't bother me much during the day or after a shower/bath but was horrendous at night when trying to sleep. Since taking it I've been able to sleep itch free.
I have been having venasections for a few years and a couple of times it took over an hour to get blood out. The only time I have had pain like you describe was when I went to my gp for a blood test and the nurse put the needle in too far. It took a few weeks for my arm to stop hurting and it was an experience I don’t want again.
I have had a few of those nightmare venesections over the years. There is real emotional trauma when you experience it. Be kind to yourself at the moment. My experience is that both the pain and bruising and sharpness of the memory will fade. I echo an earlier comment: don't be afraid to begin Hydroxy.
Hi Karina, I think April to July is too long to be left with a HCT of 52 try ringing to see if you can get a sooner appointment, maybe if you lay it on a bit telling them you are extremely worried, they will fit you in. I'm sure they keep a few appointment slots for just such occasions. If you're having problems with venesection then you need to start the tablets sooner rather than later. Can't understand why they sent you away untreated with that high a HCT. Be firm and tell them you want sorting out now. After all to them you are just another name on their production line, whereas to you it's your life that's at risk if you don't get treated
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