Living with PV

[Swim360]

Hi

I'm new here and I've just been diagnosed with PV and taking hydroxycarbamide, 1 tablet per day 2 at weekends along with allopurinol for the gout symptoms I was experiencing that led to the diagnosis. I also had approx. 8/9 pints of blood removed to get on top of the high number of red blood cells I never new I had.

I am 5 weeks into the treatment and feel light headed, mild headache and fatigue in the afternoon, is the normal and will it ease when they tweak my medication?

I am a keen sportsman/swimmer will this condition restrict my ability to train and push myself?

Thanks

Brian

[Manouche]

Hi Swim360,It might impact your strength and endurance level for a few months or more till your haem manages to stabilize your blood count. As a 57 yo male and regular swimmer, it took me over a year to get back to my previous fitness level. Sport is part of the treatment regimen for our condition anyway!

[Swim360 in reply to Manouche]

Thanks for replying Manouche it really is appreciated! There is a lot to take in. I will take your response on board and look forward to getting back to my previous fitness levels.

[hunter5582]

Hello and welcome to the forum. Glad you found your way here.

We each experience PV symptoms differently as well as respond differently to the treatment options. There is no intrinsic reason that PV will restrict your ability to train and push yourself as an athlete providing you find the appropriate treatment.

Lightheadedness, headache and fatigue can all have various causes. All can be caused by the MPN, by the treatment, or be unrelated. It can take a bit of detective work to sort it all out. One clue is when did the symptoms begin?

Hydroxycarbamide (aka hydroxyurea) is known to cause heachaches, dizziness, asthenia and dyspnea. Adverse effects are fairly common at therapeutic doses. Some people tolerate this medication but not all can. I am one of those who could not tolerate it. As a caution, note that hydroxy can also cause kidney issues, including gout. Here is a bit of information on hydroxy.

online.epocrates.com/drugs/...

drugs.com/monograph/hydroxy...

Venesections will cause lightheadedness in the short-term for some people, The intent of venesections is to induce chronic iron deficiency. Note that this is not the same thing as anemia. Your body cannot make red blood cells without a ready supply of iron. Unfortunately, iron deficiency can also have its own side effects, which include fatigue. We each experience this differently. Iron deficiency can also cause reactive thrombocytosis. I experienced both issues when I was using venesections, which lead to changing my treatment plan.

The complication in sorting this out is that PV can also cause some of the problems you are reporting. That makes this harder to figure out. Sometimes the only clue is to track the issues and note when they started.

The good news is that if your current treatment plan does not suit you, there are other options to treat PV. Besremi (or Pegasys) and Jakavi (ruxolitinib) are both effective treatment options for PV. Some people tolerate these medications better than hydroxycarbamide. I have found Besremi (and before that Pegasys) to be much more effective and easier to tolerate. Note, however, that is my experience. We are each different.

It is very important to consult with a MPN Specialist when managing PV. PV is a very rare disorder. Most hematologists do not have the KSAs to provide optimal care for PV or the other MPNs. It is also very important to let your care team know what your treatment goals are and what adverse effects you are not willing to tolerate. This needs to be factored into your treatment planning. Here is a list of MPN Specialists just in case you need it.

mpnforum.com/list-hem./

The more good news is that PV can be successfully managed. You can carry on, have a high quality of life, and engage in the activities you enjoy. There can be challenges but they can be managed. It takes an effective collaboration with a qualified MPN care team. Success hinges on finding the right treatment plan for yourself.

All the best.

[Swim360 in reply to hunter5582]

Thanks hunter5582 your reply is really informative and helpful.I agree I need to work out what is causing what. It’s early days for me and getting the right treatment plan will take time but I will take your comments on board, quality of life is really important and I will discuss what you have suggested with my care team this week,

Many thanks

[hunter5582 in reply to Swim360]

It is really important to make clear what your goals are. I go to all appointments with a written agenda that includes my treatment goals. This is the basics of the agenda I use.

Treatment goals: Define for your doctor what your priorities are. Can be very specific at times. Two broad categories are Quality of Life and Length of Life. Which is more important to you? How do you define quality of life? What are you willing to do or tolerate in order to extend your life? These are some examples.

1. Extend quality of life.

a. Protection of cognitive function is the single highest priority.

b. Protecting vision, hearing, other senses and mobility/physical abilities second priority

2. Extend length of life (only when QOL intact)

a. Philosophically – better to get less tx benefit and preserve QOL with any tx

b. My medical POAs have very specific instructions regarding my care and when to d/c all tx.

Treatment Approach Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment

Treatment Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.

Medication Guidelines Provide your doctor guidelines about how you will make decisions related to medications. Base this on your priorities about what happens to your own body.

Wishing you all the best moving forward.

[Swim360 in reply to hunter5582]

This is really informative and helpful and I will take your advice. Generally, I guess, we adopt a they know best approach without really questioning.My next consultation is Thursday this week so I will prepare as you have advised, thanks again!

[hunter5582 in reply to Swim360]

Unfortunately, most docs - including hematologists, do not know much about MPNs. That is why consultation with a MPN expert is so important. Hope you get the expert consultation you need and deserve. Note that it is a good idea to ask the hematologist how many MPN cases they have treated.

[Melior]

Hi Swim 360 I was diagnosed with pv in November 2021 and am the same age as you. My treatment is venesection and low dose aspirin only. I experienced some of the symptoms you describe - light headedness and fatigue- during the treatment phase of my venesections when they were every couple of weeks. I also felt a little faint due to low blood pressure but this has largely resolved itself now I am in the maintenance phase and venesections are spaced out . I put some of the fatigue down to the psychological impact of my diagnosis as I struggled to begin with but as others have said you need to work on what causes it. I wish you well as you learn more and move forward.

[Swim360 in reply to Melior]

Thanks for replying Melior,my bloods have come down really quickly from diagnosis 5 weeks ago, I’ve just had 2 weeks off the venesection just taking the hydroxycarbamide and a low dose of aspirin. Ideally I would prefer to off hydroxycarbamide. I’ve got bloods tomorrow and consultation on Thursday. It will be interesting to see where my bloods are. I’m going to take hunter 5582 advise and be proactive in my treatment plan. I’ve not really considered the psychological affect I look at the other people on the chemotherapy ward and think there are a lot worse of than me. I guess it will hit me at some stage. I would be grateful if you can keep me updated on how your treatment is going,Many thanks Brian

[Maximus1964]

You may be low on iron I had the same symptoms when they took that much blood from me also. Have them check your iron .

[Swim360 in reply to Maximus1964]

Thanks Maximus1964, I had thought that my bloods were heading towards normal levels prior to my last venesection and I guess the hydroxycarbamide is kicking in now, I will ask today, thanks