Just wondering how everyone is getting on with having venesections.
I was diagnosed with PV in September 2021. I had venesections every 2 weeks , 6 in total to bring my hematocrit down to 44. I had a further 2 in February which brought it down to 40. Last bloods were 44.3. I think the Vampires are circling !! I have been feeling really awful, fatigued really since diagnosis, with the occasional week or two of feeling better. I have been so much better since beginning of May although my vision is blurry again, head buzzing and increased sweating.
I really think the venesections make me worse with fatigue. I used to give blood years ago but gave up because it made me feel rotten. Beginning to dread my next blood test as I think k I will need a venesection.
I have a review with my consultant tomorrow and will be discussing this.
Just wondering of anyone else has the same. I think from what I read, most folk feeling better after venesections.
I was thinking my iron levels will blow.
Thank you your thoughts 😊
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Mauritiu
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Worth talking to your specialist. I’ve been on venesections for six months now and they do interfere with your iron levels along with your haematocrit. My doc asked me lots of questions about how I was getting on and said “venesections are not for everyone” - some people are better off on drugs. Personally I’m sticking with venesections for now as I don’t feel too bad but prob am a bit more tired than I was previously. Good luck with it all
Thank you. I do think my iron levels are/were low but I think I will persevere with the venesections and see how it all goes, still early days for me. I don't really want medication just now if possible. All the best to you .
It should hopefully calm down a bit once you are on a regular routine. The intensive venesection at the beginning can be a shock to the system I think. Also you are recently diagnosed and I personally found the first months after diagnosis tiring from the stress of it all
Yes I was thinking all that too, guess when you think about the amount of blood removed in a short space of time the body will react! I feel really well today, looking forward for my review tomorrow with the doc but dreading it in a way too .Take care
Some feel worse with venisecting and some better. I venisected for 10 years and didn’t feel well after them. Instead of getting 450ml off every 3-4 months I changed to 125ml off every month. It made a huge difference, still not good but much better. Also the body can get used to it. Then of course there are meds which also have pros and cons but most of us end up on them eventually, a separate discussion perhaps.
Thank you for your reply, having less removed sounds interesting, maybe an alternative. I guess I will see how the next round of venesections goes.I am expecting meds at some point, it kinda scares me thay once your on them that's you for life 😔
I am 57, no previous blood clots although I have heart issues, tachycardia getting worse last 6 months, under investigation just now, A and E doc thinks it's it SVT, superventricular tachycardia . Something else to deal with 😵💫
HiYour comments are very familiar. I asked my hematologist to give me rest with the phlebotomy after fatigue hit a week after the third one I’d had. I got my iron levels tested as well as my other bloods and am indeed low in iron.
Lower iron is what they are after using the phlebotomy, but it’s a balancing act between those low iron and low hematocrit.
I don't yet have experience on venesections. But your comment about blood donation suggests something going on not related to your MPN since your blood loss sensitivity seems to predate the MPN. This could be worth discussing with Dr if you don't yet have Dr's opinion on this history.
Hi, I have talked to my haematologist about my previous experiences with blood donation and she suggested medication. I guess it's still early days for working it what's best for me just now. I am seeing my haematologist today so keen to hear what she says now.My hematocrit is 44.3 platelets 770 white bloods cell ok .
I know exactly what you mean. When I was diagnosed in 2018 I went through a crazy number of venesections in a short space of time, which left me weak and severely fatigued. Too the point where I would sleep during the day, sleep 9 hours at night and wake up drained and tired. If I have the odd one I’m fine but if I have a series of venesections then the fatigue really hits home to the point I’m housebound. My consultant says I’m very sensitive to the lack of iron. I’ve been on Hydroxy before but it doesn’t seem to sit well with me. I’ve been on Pegasys Interferon since January and it seems to be helping. I’ve recently had some venesections to lower my Hematocrit, but these were the first this year. It again left me feeling severely fatigued for 2 weeks after the 3rd one. I suppose it’s something we have to accept. On a plus it does eventually get better and I’m beginning to feel more energetic now. I think during venesections the heat doesn’t help at all and remember you need to drink plenty and I mean plenty of water!Hope you feel better soon, just give it time.
I had a target of 45 and was ok with venesections to keep it at that level but I then had another blood clot in my stent. They reduced it to 40 and since this been feeling really tired and experienced some shortness of breath in the same way I used to get when I was really anaemic in the months before my hysterectomy. My doctor discussed medication if venesections didn't work but I'm going to persevere for a bit longer and see how I go I might see if they can increase my target slightly (say 42).
What you are experiencing is not uncommon with repeated venesections. The intent of the venesections is to induce chronic iron deficiency without inducing anemia. These two things are not the same thing. Your body needs iron to make RBCs. Limited iron = limited RBC production. That is a good thing in terms of controlling erythrocytosis but iron deficiency can have significant adverse effects. I experienced fatigue, loss of concentration, alopecia, and reactive thrombocytosis ( platelets +200K). The iron deficiency symptoms were worse than the PV symptoms. This is why I opted to go on the interferons. Started on Pegasys then switched to Besremi. Note that I am hydroxyurea-intolerant. I had the option to try Jakafi but preferred Pegasys/Besremi. The IFNs have been more effective and much easier to tolerate than either venesection or hydroxyurea. Note that I also have a non-driver mutation (NF1) that increases my risk of MPN progression. The IFNs are the option we have most likely to be disease-modifying, decreasing our risk of progression.
If you are finding that the venesections are not tolerable, then you do need to let your care team know. There are other options. We each respond differently to each of the options. It is up to you to determine which option you prefer to use based on your goals, risk tolerance and preferences.
Thank you again for your reply. It had helped make thinks a bit clearer and understand it all. It us difficult to understand which medications might be better but I guess everyone is different. It's good to read others experiences with medication and what works for them 😊
Not only do we each respond differently to the treatment options but we also have different treatment goals and value treatment outcomes differently. The answers are not black and white. That is why it is so important to be clear on what your treatment goals are as the starting point.
Stay hydrated. Eat iron rich foods. You will adjust. Be honest with your care giver and read everything you can. This group has been an invaluable resource
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