Hi All, I was diagnosed with Polycythemia Vera last April. Since that date I have been having bloods every month and venesection monthly. I have pain in my hands and feet and constant kidney pains. These are always worse come the end of the month when treatment is due. I also suffer with fatigue and again this increases in severity by the end of the month.
I have spoken to my consultant and had the usual tests/scans. All I get told is the venesection will control the illness and to manage my fatigue ! My issue is that I work full time , I cannot afford to stop or just take days off when im so tired I can barely drive. I feel useless most of the month and worry this effects my marriage. I literally do not know what to do or where to turn as im struggling to manage daily life and feel that im a burden if I moan or complain. Any advice would be most welcome
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iswhatitis1
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Thats awful. I am sure there will much more experienced folk here who can advise. I would ask if you are seeing an MPN Specialist and support nurse who should be providing you with support and advice.
I hope things improve and you feel better as time goes on. Fatigue is bad enough but pain on top of that too is such a challenge.
Thank you for your reply.Im due with my consultant tomorrow and I have asked for support nurses to be involved.
The fatigue literally at the end of each month is crippling and I just wondered if anyone else suffered this way? As for the pain I dont think there has been a day in the last year where I have not had some form of pain somewhere. Its just so frustrating and I really do not like to moan. Strange as it sounds in someways it would just be nice to know that im not unique !
Were you diagnosed in April this year or April 2021? If you’ve been having venesections monthly for over a year there’s no wonder you have such a heavy symptom burden.
There are cytoreductive treatments, such as hydrea and Pegasys to control your disease. Because you’re young Pegasys would be the better option if you decide to go down that path. Quality of life is important too, and it sounds like yours is being negatively impacted.
At your appointment tomorrow be sure to explain the adverse effects venesections is having on your everyday life. Now is the time to advocate strongly for yourself. Thinking you’re a burden if you complain is definitely the wrong approach. As my hubby says, the squeaky wheel gets the oil!
HI and thank you for taking the time to message me.I was diagnosed April 21 , started with venesection weekly as my levels were so bad. This then changed to fortnightly and then monthly which is where it has stayed. Mo9nthly my levels are always over target hence the venesections, im just struggling as I really do not get any help. The consultant calls initially monthly but now every 3 months. Usually its an understudy rather than the consultant herself, they ask the same questions and I say the same things and nothing changes. Life is becoming more and more difficult, I struggle with pain daily and the fatigue at the end of the month before treatment is ridiculous. I left my job as an ambulance tech as I could not do the hours and opted for a healthier job behind a desk ! But now i literally fall asleep sat there daily . Its just getting beyond a joke now and its getting me down. I will take on board everyones comments and push my consultant
If you haven’t had your consultation yet, I would ask today for a referral to an MPN Specialist.
You can stay with your local team too if the logistics for you are difficult, however, you can still request a ‘second opinion’ or opt for ‘shared care.’ I requested the latter option recently after dithering for years, so glad I did.
You can ask your haematologist or GP to refer you. These are rare diseases and a general haematologist is not specialised in MPNs. Someone struggling like yourself desperately needs that specialised input going forward in their healthcare plan.
Sorry to hear you are having such a rough go of it. PV symptoms can be difficult to manage as can the results of the treatment. There is much more to PV than the primary risk of thrombosis that some doctors tend to focus on.
Fatigue (asthenia) is the most common MPN constitutional symptom. Many people with PV experience this issue. It can be the direct result of the PV. However, it can also be the consequence of the treatment. Many meds have this as an adverse effect. Fatigue is also an adverse effect linked to the venesection-induced iron deficiency you would have after repeated venesections. The whole point to the venesections is to induce iron deficiency without inducing anemia (they are not the same thing). Your body cannot make RBCs if there is no iron to make them with. However, there are consequences to iron deficiency. These can include fatigue, loss of concentration, alopecia, and reactive thrombocytosis - all of which I experienced when I was using venesections to treat the PV. You may need to do a little detective work to figure out what is causing the fatigue. One clue would be when it began. Before or after the venesections.
There are good resources on how to manage fatigue.
Pain in hands and feet (usually burning sensation too) is a very common PV symptom. Many of us experience this. It can present as erythromelalgia or be more subtle but still painful. This is a microvascular issue caused by an abnormal interaction between the blood cells and the vascular endothelium. I experience dthis issue when I was off of aspirin for a while. It stopped the day I resumed daily low-dose aspirin. Some people find that they need more than 1x/day. Some docs routinely recommend low-dose aspirin 2x/day. Daily aspirin is a standard of care for PV. You did not mention whether you were taking aspirin. This is something to discuss with your MPN care Team.
Regarding pain in general. The JAK2 mutation does mor ethan make you body make too many red blood cells. It also causes you body to make too many inflammatory cytokines. This creates systemic inflammation that can cause a host of secondary symptoms. Here a couple of examples of the research on this topic.
Controlling systemic inflammation is an important component of PV treatment for many of us. Fortunately there are things that you can do about this issue. There is support in the literature for the value of an anti-inflammatory diet. Some of us also use anti-inflammatory supplements successfully. I have had great success with curcumin and L-glutathione. Note that I use complimentary health interventions under the direction of an Integrative Medicine Specialist and with the awareness of my MPN care Team.
The abdominal/kidney pains are not something that should be ignored. Pain is a signal that something is wrong. It may be something minor. It may or may not be related to the PV. It is something that needs to be followed up and properly assessed.
As LittleLuna suggests, consulting with a MPN Specialist is very important. MPNs are rare disorders and most hematologists do not have the KSAs to provide optimal care. Do whatever it takes to see a MPN Specialist as soon as you can. Here is a list
FYI - I have had a MPN for about 30 years. It was ET but progressed to PV about 8 years ago. My old hematologist had me misdiagnosed and I was not properly treated for PV for about 5 years. The missed diagnosis came to light when I consulted a MPN Specialist. I was not able to tolerate hydroxyurea and opted for venesection-on for a couple of years. The side effects from the iron deficiency were worse than the PV symptoms. Therefore I started on Pegasys and later switched to Besremi. The IFNs have been much more effective and much easier to tolerate. I feel better and my quality of life has improved on this treatment plan.
Know that you can find a viable treatment plan to ,manage your variant of PV. This will be best achieved by consulting with a MPN Specialist who can guide your care.
Thank you so much for the in depth response. I will take on board all the points and will push the consultant more. I am just not that person who moans and i feel awful when i do. I will try the curcumin etc and I do train 4 x a week ( although it really is a push right now as im just so tired0 I refuse to give in but the pain is ridiculous and the lack of help from the hospital is driving me mad. Sorry for the rant and thank you again
It is not just moaning when you let your care team know what is going on. Communication is one of the pillars of an effective working relationship. The lack of help from your current care team may simply be that they do not know what to do to help you. This is why it is so important to consult with a MPN Specialist. If you want help, work with a provider who has the KSAs to help you.
If you decide to try curcumin, do let your care team know you have added a supplement to your care plan. Many providers are unfamiliar with complimentary health interventions. Some tend to say "no" simply because they are not familiar with the supplements and their potential interactions (which they do have). That is why I consult with an Integrative medicine doctor. Note that not all curcumin is the same. Some of the formulations are worthless. Be sure to pick a formulation that is bioavailable.
Saw your note about the insomnia. This is another common MPN symptom. It is thought to be related to the overproduction of inflammatory cytokines which can disrupt the circadian rhythm. I experienced chronic insomnia for over 20 years, I tried everything there is to try. Only one thing ever worked for me. A medication called Belsomra (suvorexant) which is a new class of sleep med that is a dual orexin receptor antagonists.
Note that I do not advocate sleep meds until other options have been tried
Good Sleep hygiene (this one is critical no matter what else you do)
CBT for insomnia (very effective for many people)
Melatonin supplement (helps quality of sleep)
Rest/relaxing supplements like - valerian, chamomile, tryptophan, etc. (can be used in different forms including teas).
Things I do not recommend based on personal experience are the typical class of sleep meds like Ambien or Lunesta. These meds will knock you out but disrupt sleep architecture. The sleep you get is not restful.
The dual orexin receptor antagonists work differently in your body, reducing the amount of active orexin (stay awake chemical) in the brain. This allows for a more natural sleep. This is what I came to after exhausting all other options. It is not the right option for everyone but has worked for me.
That was a whole lot of words to say that insomnia is something you can get help with. There are absolutely things you can do to deal with this issue. This list is certainly not all of the potential things that could help. I would add that when we are really stressed we do not sleep well. Dealing with the stress level would certainly help.
As Hunter says, be sure to follow up on the kidney pain. Has your usual tests included Complete Metabolic Panel (CMP)? This is important info for any kidney/liver worries. If there is something interesting there Dr would follow up with more detailed tests.
I also get occasional kidney pains, it was really bad during/after covid early 2020, but it's not entirely gone. I had liver issues too. But I'm less worried since I get regular CMP tests.
I understand where you are coming from. My own experience is that my symptoms have not gone away, even though my numbers are good. My consultant appears to manage my risks rather than my symptoms.
I've had over 66 venesections. I was on hydro, now on aspirin and pega, but still hsve brain fog and fatigue..
I was diagnosed earlier this year, had 2 venesections 2 weeks apart and was advised would move to 6 monthly blood tests as levels had dropped to an acceptable level.
5 weeks later the fatigue crept back in and has been so bad by 2 pm most days I could lie on the sofa and cry - I also work full time, thankfully from home but it’s hideous and feels like it’s taking over entire life.
I had a consultant appt scheduled 3 weeks ago & agreed venesections 6 weekly for now, one scheduled for today. Praying it makes a difference as after the first 2 I felt markedly better.
I don’t have kidney pain but the previous burning feet thing I had has come back.
It’s hard when a condition you’re meant to be able to live with takes over your entire life.
My other half is currently shut away upstairs after contracting covid & is upset I’m not more sympathetic - l literally just about have the energy to put food and painkillers on the stairs and do a days work/look after the dogs.
Oh how I sympathise with you, when you are under the weather and drained you shouldn’t have to dole out support to others when theirs is temporary. On that note I really hope your partner’s covid is just that and a speedy recovery is on its way.
OMG i completely understand. My whole life has been consumed. I have changed careers to make life easier yet still like you by 1400 i am exhausted most days, then i cannot sleep due to insomnia . It feels like a vicious circle that I cannot break. Im literally at the end now and just hope the consultant can give me some hope. Life is not fun right now
Its a tough place to be, I have only been diagnosed for 6 weeks and trying to come to terms with the condition.
This is an excellent forum and I have had some really good advice already which I have been able to use. There are some knowledgeable people here!
We are all on a journey here and although it's easy to say we must stay positive but we are all entitled to have a good moan.
There are a number of treatments available for PV and we are all different so it is really important to talk to your Consultant and dedicated nurse and let him or her know how you are feeling.
Discuss your treatment options to improve your quality of life.
I don't think it is an option to be told just to manage your fatigue you need help to try to establish it's cause.
I am suffering with fatigue although not crippling and I am trying to establish if it is the PV the hydroxycarbamide or the venesections causing it.
Exercise is good when you can and it does make me feel better and I am taking a couple of short naps rather than try to fight the fatigue.
Hi, I’d contact Macmillian nurses for support. I used them and they were fantastic. I have ET. so not as draining I’m also retired. I believe you are entitled to some sort of help at work. All I know is that someone I used to work with suffered from MS. She was given and LSA a few hours a week ( we both taught) and was entitled to it under I believe a government scheme.There is also PIPS. Difficult to get but worth a try. I recommend to get help from age Uk to fill it out. Take someone with you who is over 55 then you are eligible.
Also look at fatigue clinic. Your blood nurse should be able to point you in the right direction. That helped me too. They will help you re evaluate what your priorities in life are and what you can cut back on. Do give us an update.
Hi iswhatitis1, so very sorry to know that you are feeling like this, fatigue is very debilitating. I agree with the advice from the others, speak to your consultant and also, get some advice from the specialist nurse about the symptoms, particularly fatigue. With regards to working, it might help you to speak with your employer to try and find ways to help you at work, to make some adjustments to help you during the work day, even being able to take a few extra breaks during the day would help you, and be able to go and sit somewhere quiet, little things can make a difference. Best wishes, Maz
Hi love your tag and itiswhatitis,except there is more to learn and understand about PV. I look have PV and 3 years in my body is still trying to adjust and heal itself. My partner has been supportive and we work toghether on managing this life time change. Stay positive your in the right place their are experts and proffesionals that will guide and support you don't worry,your not alone mate.Adiewon
Thank you so much for the reply. Im trying to stay positive, this is the first time ive felt low. i just see how much my wife is suffering and I feel awful putting her through this. I have a telephone call today with the consultant and believe me i wont be quite so understanding and nice today !! Just seems a year on im still in the same place getting nowhere. Everyones advice and help on here has been amazing and I truly am grateful. I was starting to feel very much alone
Hi sounds like you got your mojo back,it's awful to see our partner,families suffering for us. But in my case the more assertive and knowledge l became about Myloproliferative neoplasm the more empowered they became. Top tip next time you talk on the phone to anyone regarding PV and the like tell them your wife is listening in. This helped Keith and l loads and the medics were more clear and patient answering questions exct. It will get better it would be wrong to say lm back to before my Thrombocythemia event l will never be there again. I'm resigned now and accepted it all and lm learning to accept the changes and feel so grateful lm still here with my loved ones.Take care stay strong
My first post here - was also recently diagnosed in Dec’21 w PV. Did 3 venesections but somehow didn’t reduce the HCT (still at 56% today!) plus I fainted at the last venesection and hence told the doc this is not for me!
But doc has started me on Pegasys and aspirin. Pruritus (itching after bath) is gone. Headaches much reduced but fatigue and brain fog is there.
Agree w the forum - find a good MPN specialist and read up on the various options so that the doc’s recommendation can be better appreciated.
Regards Joyfuljoyful123 post it is well worth discussing other treatments available and seeing if they would be suitable for you. I think pegysus is a great drug but is expensive so you need to ask for it as first line of treatment is hydroxycarbamide which is very much cheaper. There is also a new one out like peg called besremi. If your consultant doesn’t listen you need to find another. Drink lots of water to prevent dehydration. Good luck and please let us know how you get on
Hi, I have PV and also some fatigue. I find that if I get at least one hour of continuous movement per day the fatigue is greatly reduced. I use bicycling for my exercise when weather permits and a tread mill in bad weather. I used to exercise with weights by that did not help me with fatigue. Everyone is different.I would recommend having a consult with a mpn specialist and have your iron levels investigated as others have said, it would be a starting point.
I train 4-5 x a week at my gym, i also do 30 mins cardio daily on the running machine ( walking at incline ) . I always feel better after its just getting to the gym thats the issue, some days i struggle to drive home from work
I understand, some times I just have to force myself to get out and go and so far I always feel better after exercising. I think it helps if you like doing whatever exercise you choose. Your fatigue seems to be worse than mine, we are all different. Keep moving and best to you.
I've read many of the replies to your queries and as usual, all are helpful and informative. I too have PV and also ET. I suffer from similar symptoms and do get felief from phelbotomies (venesection). Recently though, I've had almost debilitating fatigue. Hunter, as always, offers many plausible reasons. My first thought when I read your blog, was to ask what your hematocrit level is...mine had dropped below an acceptable range causing me to become anemic. I started taking iron supplements to bring the hematocrit back up and so far it's helped. The catch 22 with phelbotomies is just that-they lower the blood levels which allows your blood to flow more smoothly and you to feel better with fewer symptoms, but you need to be careful not to lower your levels too much or you start to see your blood levels go in the opposite direction. Unfortunately, it's a numbers game and how you feel. Thanks for allowing me to weigh in
I also wanted to mention, that yoga, pilates and even weight training have helped me overall. There are days I've literally felt as if I've hit a wall, but often feel better if I move.Just sitting quietly and deep breathing helps me.
I also have regular accupunture (helps me with my insomnia) and have been seeing a Dr of Integrated Medicine, in addition to an MPN specialist. I take a variety of food based supplements that have helped me stay healthy...in my opinion. I eat clean, I meditate for anxiety, and I exercise when my body allows. It's a journey and and we are all different but the same in that we share MPN.
Seems I keep adding more to this chat...I was on HU for 1 absolutely horrible year. Obviously, it's not the drug for me as others have handled well. I lost weight, hair, and in general, felt lousy. I am no longer on HU or any other drug. I don't advocate this for anyone else, as I stated previously, it's your journey. I've had PV and ET since 2016 and this has been my best year so far.
Thank you so much for taking the time to reply, Literally the fatigue is crippling me and my bloods came back this week as below my target range so I cannot have Venesection as ill become anemic. To to top it all off im now having tests for lymphoma this friday as after discussing symptoms with my consultant she is now concerned that this could be an issue. TBH ive had enough and just about ready to say F it all and do what i want as nothing is helping
I'm so sorry! When I first joined this chat group I was hoping to find answers to alot of my questions about MPNs and their various symptoms. I did and so much more that I felt overwhelmed! What I've found is this is an individual journey and no 2 people are alike in their symptoms, (although there are similarities across the board), we all respond to treatments differently. As I mentioned in a previous text, I responded poorly on HU-the drug of choice for most Rheumatologists to lower platelets and to manage PV. Many on this site have been on HU and continue to be on it with very few side effects. I wasn't that lucky-my body hated it!Finding a Specialist in MPN and working together as a team, is vitally important. It's your body after all. How I approach my wellness, isn't for everyone. My platelet levels are much higher than what most share on this site and I have phelbotomies every 6 weeks or so, again depending on the numbers.
Don't give up and try not to become discouraged. Try taking your emotions out of the equation ( easy to say, right?) Instead, focus on what you can control.
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