I live in Plymouth UK, and have just been diagnosed with Polycycthaemia Vera , and am waiting to hear from my hospital my treatment which I believe will be phlebotomy ie bloods taken to reduce my red blood cell count.
I had a liver transplant 12 years ago and have enjoyed good health till now :(. Only symptoms I've had is extreme tiredness (Just recently) joint aches and lack of concentration. Also blurry vision which all makes sense now after my diagnosis.
I would love to hear from people who have the same illness. I am 75 years of age, and try to stay positive in all situations.
I lost my dear Wife six years ago, and live alone in Plymouth, Devon, U.K.
I exercise every day and do a fair amount of cycling around the beautiful countryside here.
This is all very new to me, but if I can offer support to someone I will.
Good luck everyone.
Peter.
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plym1uk
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Hello and welcome to the forum. I am glad you found your way here. This is the right place to be.
Like you I have PV. I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. At age 66 I have lived a rich life despite the MPN and plan to continue doing so. Also like you, I have a somewhat complex case. I also have Neurofibromatosis Type 1. This increases my risk of leukemic progression, The NF1 also caused a brain tumor found at age 63. I had to have brain surgery. I also developed an arrhythmia that required heart surgery a few years ago. Had a few other health issues and surgeries lately too. However, life is still good. I intend to keep it that way. I will live a good life to the fullest for as long as I can.
Phlebotomy/venesection is a mainstay of PV treatment. It is often a first step. In the short-term it reduces hyperviscosity by replacing whole blood with plasma. In the long-term its benefit is that it induces iron deficiency. (without anemia). This helps to control the erythrocytosis. Like all of our treatment options, venesection has a risk/benefit profile. We each respond differently. Our responses change over time.
At age 75, you are considered "high-risk" (age>60/65). Most hematologists would recommend cytoreductive therapy. Not all follow the age-based risk protocol. There are two first-line cytoreduction treatment options for PV. PEGylated Interferon(s) and Hydroxycarbamide. These are two different classes of medications with different risk/benefit profiles. Many health systems prefer Hydroxy to PEG because it is so much cheaper and some of the risks associated with Hydroxy have to do with long-term use. If you engage in cytoreduction it is up to you to research each of your options and decide what is in your best interests based on your treatment goals, risk tolerance, and preferences. There are also second-line treatment options like Jakavi, which in some cases are a very good choice.
My own story includes the use of Hydroxy (not effective and I could not tolerate the toxicity). I also tried a venesection-only protocol. This worked well for a while, but the side effects from chronic iron deficiency proved too bothersome. In May 2021 i started on PEG (45mcg/week Pegasys). Within a few months my erythrocytosis and thrombocytosis were under control. I have experienced no significant adverse effects. I am currently considered to be in complete hematologic remission. Note that not all respond as well to PEG as I have.
Treatment really can work. There is no cure for PV, but it can be managed. We each need to find our own path to follow. We are each different and need a unique treatment approach based on our individual profile. MPNs are rare disorders. Unfortunately, most hematologists do not have the KSAs to provide optimal MPN treatment. That is why it is so important to consult with a MPN Specialist. If you do not already have one involved in your case, here is a list. mpnforum.com/list-hem./
It is very important to develop a base of knowledge about PV and your treatment options. There is more than one choice and you deserve to review all of your treatment options. You can only do this with a basic understanding of PV and your treatment choices. Here are a few resources to get you started.
One of the things you will learn is that at the core MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway does more than make our bodies make too many blood cells. It also causes our bodies to make too many inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms and conditions we experience. Controlling systemic inflammation is a key element of managing MPNs.
Getting a PV diagnosis, a form a blood cancer, is scary but it is not an end. It is the beginning of a journey. The journey can have ups and downs, challenges and successes. We find things that work and things that do not. The thing is to never give up. Treatment options are improving. We can live good lives if we find the right approach. Sure there are challenges. I have faced some unique and interesting health learning opportunities myself. I am still here. i am still living a good life. Please plan to do the same.
I have had a chance to read your mail in length and wish to thank you for your input. I am a fighter and will do my utmost to keep ahead of this and live my life to the best of my ability. Life is for living, Feeling a little bit better as learning as I go along. Thanks.
I live in Exeter and was diagnosed with PV 16 years ago. I have been on Hydroxicarbamide for 8 years. I’m now 67. It suits me very well with no side effects. I find the best site for accurate, relevant information is mpnvoice.org.uk
Keep up your exercise when you can, you will learn your limits. I agree, our countryside is beautiful and we must make the most of it.
Lovely picture - I know that view very well as I too live near Plymouth. Bet it doesn't look quite like that today! We will be sharing the same Haematology dept. I also have PV and I take aspirin and Hydroxy. I spent a long time trying to come to terms with taking the medication - I am someone who puts off taking a paracetamol if I can help it. But after a time it just becomes second nature and I just get on with it and try to put it all to the back of my mind. I am 52 and have probably had this disease for at least 10 years, possibly more but was only diagnosed in 2017. I wish you well with your PV journey. Anytime you have any concerns or questions if you post, people will always come back to you to offer advice and support. All the best.
Thanks MW . How do you find the Haematology dept at Derriford I come under a Dr W Thomas Consultant Haematologist ???? When I had my liver transplant I came under Professor Cramp and his teami n Hepatology they were fantastic and saved my life 12 years back. I feel reasonably okay just so tired during parts of the day. I still exercise well plus cycling lol . Love life.. Thanks so much for your support. Peter.
Yes I do suffer from tiredness. You sort of get used to it and know your limits. I find the haematology team very nice but every appointment you see someone different. That can lead to some confusion (for me) and varying views. People here on the forum suggest getting yourself an MPN specialist. I've never managed to find the confidence to question the abilities of the Haematology Team. I keep trying.... Having said that they do have regular meetings with the whole team to discuss individual patient's treatments and I think they seek advice from others in the field too, so that is reassuring. The Haematology Nurse is really helpful and will always get back to you if you have a query. Its worth getting her contact details when you have your next appointment. All the best
hello Peter and welcome to our forum, I also live in Devon, (near Great Torrington). You sound very positive, which is great, and glad that you have found our forum, you will get some great and supportive advice from the lovely people on here.
We have a lot of very useful information on our website mpnvoice.org.uk so do have a look.
Hello Peter, , , I'm sure you'll cope well with your PV diagnosis having been through the trauma of being a Transplantee. And I sense a little relief at being able to put a label on your recent symptoms over and above usual tiredness. The exercise will help.
I can't offer much by way of help with your PV I just wanted to welcome you and Thank You for posting a great sea view there.
Hi Peter, sorry to hear about your diagnosis. Try not to worry too much as you will feel a lot better once your treatment starts. My husband felt a lot better after his venesections he managed these for two years with his PV before going onto hydroxy. His hydroxy worked well to begin with but he ended up iron difficient he was absolutely wiped out.He was diagnosed with PV at 41 three years ago his bone marrow revealed he had primary MF so he is now on ruxolitanib and is feeling a lot better in himself .
This medication has worked wonders so far we just hope and pray it continues to work well.
He's 50 this year and still manages to work full time .
I hope you start feeling better once your phlebotomies start.
As Hunter says here, HC is typically prescribed for older patients. If your other blood counts are also high your Dr is more likely to recommend HC (hydroxy).
<<Many times, PV patients will have elevated white count and platelets as well.>>
I have ET with possibly some PV. I take HC and it works well for my blood counts. It's actually a mild category of chemotherapy that can work well for those who tolerate it. But if you do get that Rx, it's important to use only the dose level that you need for blood control with minimal symptoms. Drs sometime Rx too much of it as was my case.
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I was in Southwest England (Falmouth, Winter 1986) , we went there partly to experience an area that most Americans don't go. Quite cozy in the cold.
We are so lucky to have MPN Voice fighting our cause and this professional forum to share our thoughts, ask questions, educate ourselves, and more importantly, offer each other support. I know how much it meant to me when I came across this forum six years ago. Maz and her team do a fantastic job.
That is a beautiful photo. You are so lucky to have such stunning views on your doorstep.
I am also under the haematology department at Derriford (I have ET and live near Tavistock) and I am also happy with them. They have been very efficient right through the lockdowns with regular telephone appointments and keeping a close eye on my platelets with more frequent appointments and tweaking of medication when they went awry!
Hi Peter,Welcome to forum. I was diagnosed with PV a year + ago at age 67 and have been treated with phlebotomies and pegasys. I traveled in Devon as a young man and remember how beautiful it was - I am american - you are fortunate to live in such a place. We all have our medical stories - but as weird as this might be, I found the MPN experience as something very interesting (detached from my medical implications) with all the research, ability to collect understandable data (bloodwork and bone marrow), and accessible resources that help you understand (like this forum). I hope I explained coherently - its a journey.
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