Potential adverse effects of long-term venesection used to treat PV.

[hunter5582]

I got curious after watching the Richard Silver presentation that was recently posted on the forum. Dr. Silver quoted some potential adverse effects from long-term use of venesection (AKA phlebotomy) to manage PV. I had seen those findings previously in the literature. I have also experienced some of them myself. I was wondering what ChatPGT would say if asked. I asked the question two different ways.

What are the effects on long-term phlebotomy to treat polycythemia vera?

Polycythemia vera is a condition characterized by the overproduction of red blood cells in the bone marrow. Phlebotomy, the process of removing blood from the body, is commonly used as a treatment for polycythemia vera to reduce the excessive number of red blood cells. While phlebotomy can effectively manage the condition, there are some potential effects of long-term phlebotomy to be aware of:

Iron deficiency: Frequent phlebotomy can lead to iron deficiency over time. Since red blood cells contain iron, the removal of blood through phlebotomy decreases the iron stores in the body. Iron deficiency can cause fatigue, weakness, decreased exercise tolerance, and other symptoms associated with low iron levels.

Anemia: In some cases, repeated phlebotomy sessions may lead to anemia. Anemia occurs when the body's red blood cell count drops below normal levels, resulting in reduced oxygen-carrying capacity. This can lead to symptoms such as fatigue, shortness of breath, and dizziness.

Iron overload: While iron deficiency is a common consequence of phlebotomy, in some individuals, it's possible to develop iron overload. This occurs when iron is absorbed more efficiently than it is removed from the body. Iron overload can have adverse effects on various organs and may require additional treatment to manage.

Thrombocytosis: Polycythemia vera is often associated with elevated platelet counts. Phlebotomy may decrease platelet levels temporarily, but in some cases, it can trigger the body to produce more platelets in response. This condition is known as thrombocytosis, which increases the risk of blood clots.

Increased cardiovascular risk: Although phlebotomy is performed to reduce the thickness of the blood and lower the risk of clotting, long-term phlebotomy may increase the risk of cardiovascular events. The reasons for this are not fully understood, but it is important for individuals undergoing phlebotomy for polycythemia vera to be closely monitored for cardiovascular health.

It's essential to note that the effects of long-term phlebotomy can vary from person to person, and the management of polycythemia vera should be tailored to each individual's specific needs. Regular monitoring and follow-up with a healthcare professional specializing in the treatment of polycythemia vera are important to optimize treatment and minimize potential complications.

What are the effects of iron deficiency without anemia

Iron deficiency without anemia, often referred to as iron deficiency without overt signs of low hemoglobin levels, can still have several effects on the body. While anemia is characterized by a low red blood cell count and decreased hemoglobin levels, iron deficiency without anemia typically indicates low iron stores in the body.

Here are some potential effects of iron deficiency without anemia:

Fatigue and weakness: Iron is essential for the production of hemoglobin, the protein that carries oxygen to tissues and organs. Even without anemia, inadequate iron levels can impair oxygen delivery, leading to fatigue, weakness, and a general lack of energy.

Impaired cognitive function: Iron plays a crucial role in brain function and development. Insufficient iron levels can affect cognitive processes such as attention, memory, and problem-solving abilities. In children, iron deficiency without anemia has been associated with reduced cognitive performance and impaired learning abilities.

Decreased exercise tolerance: Inadequate iron stores can limit the amount of oxygen that muscles receive during physical activity. This can result in reduced exercise tolerance, decreased endurance, and a greater sense of effort during exercise.

Impaired immune function: Iron is necessary for the proper functioning of the immune system. Iron deficiency, even in the absence of anemia, can weaken the immune response, making individuals more susceptible to infections and impairing the body's ability to fight off pathogens.

Hair and skin problems: Iron deficiency can lead to changes in hair and skin health. Without sufficient iron, hair may become dry, brittle, and prone to breakage. Skin may become pale, dry, and have a dull complexion.

Restless leg syndrome: Iron deficiency, including the non-anemic form, has been linked to the development of restless leg syndrome (RLS). RLS is characterized by an irresistible urge to move the legs, often accompanied by uncomfortable sensations. Adequate iron levels are important for preventing or managing RLS symptoms.

Impaired temperature regulation: Iron is involved in regulating body temperature. Insufficient iron stores can disrupt this process, leading to difficulties in maintaining body temperature and increased sensitivity to cold temperatures.

It's worth noting that the effects of iron deficiency can vary depending on the severity and duration of the deficiency, as well as individual factors. If you suspect you have iron deficiency, it's important to consult a healthcare professional for diagnosis and appropriate treatment.

This is consistent with what Dr. Silver presented and with what can be found in the literature. It seems that ChatGPT got it right on this question. 👍👍

This should not to be taken to mean that venesections should not be used. In fact, at the initiation of treatment, venesections remain a mainstay of treatment to reach the HCT treatment target for PV per Dr. Silver and treatment guidelines. Dr. Silver makes the point that the potential adverse effects of chronic venesection-induced iron deficiency is one of the reasons that cytoreductive therapies (e.g., interferons) are superior in the long-term management of PV.

This is certainly the case in my experience managing PV. I have experienced resolution of iron deficiency adverse effects and a better quality of life using interferons compared to venesection-only.

It is worth noting that we are all different in how we respond to each of the treatment options for any MPN. We each need an individualized treatment plan that is based on our unique MPN profile.

Wishing everyone all the best on your MPN journey.

[Wewo01]

Great information! Thank you for sharing. I hope you are doing well, my friend.

[bordeauxgirl]

Thank you Hunter for the explanation of the effects of Iron deficiency, it has cleared a lot of questions for me, now I have to get my Haematology guy to listen and give me proper answers.

[ainslie]

mmm, not so sure about this one, I think we need to be cautious about posting info from Chat GPT on here. I think we should using direct quotes from experts and their papers.

In a recent article in the London Times “ A senior Silicon Valley Exec has described ChatGPT as a “bullshit generator” because it is trained on inaccurate datasets “from the darkest holes of the internet”

Using a phrase coined by the Princeton professor Arvind Narayanan, Meredith Whittaker president of Signal and a former senior exec of Google , warned of the dangers to society and democracy the chat box could cause spreading misinformation. Unquote.

AI may have its place in the future perhaps but not a good source for medical info currently. Some of it may appear at first sight to agree with some of Dr Silvers views but maybe some of it came from his papers. We also see from Clair Harrison’s most recent vid on Rux that not everyone agrees with Dr Silvers views.

Re what Chat GPT churned about re venisection symptoms etc. I have venisected for 10 years and know many doing so for decades and some 40 years, I studied it to death and consulted many experts. As Clair Harrison stated it’s the standard first line treatment for low risk PV patients.

ChatGPT says it can cause iron overload, I have never heard that from any doc or patient or read it in any paper.

It says it can lower immunity, ditto to above, never heard of it, some drugs yes but not venisect.

Can increase platelets, not me or many , minor for some but so what , not usually a concern.

Cardio risk, really? Never heard of that either, I have heard the opposite though, ie venisection reduces cardio risk.

Affects hair and skin, haven’t heard of that either, Hydroxy and Peg are much worse for skin and hair, so not balanced accurate info.

Affects body temp , not me or anything I read or heard.

So concerning, AI maybe something in the future but right now hopefully not on this forum.

For balance , I agree and applaud most of your posts.

[Jamesxyz in reply to ainslie]

Great response by ainslie.

Let's remember when asking chatgpt something, you're just "talking" to a machine that's looking things up in an encyclopedia.

Followup with more detailed questions and you'll get absurd responses like

"I think I love you".

[hunter5582 in reply to Jamesxyz]

It was a great response for our friend ainslie. Love the back and forth we have on the forum. I was actually surprised that ChatGPT seemed to get as much right as it did, but it was not 100% right. Ultimately it is just a machine. I think its best use is to generate ideas about what to look into in more detail.

[Jamesxyz in reply to hunter5582]

Yes, remember the old computer programming saying:

"Garbage in, garbage out"

Chatgpt is just a computer program, likely written by some very clever people.

[hunter5582 in reply to ainslie]

I do agree about taking anything from ChatGPT with a large grain of salt, particularly since it does not give the references to the "facts" that it states. Sometimes it gets it right, sometimes it does not.

I should have noted that the bit about iron overload is the one thing i have never seen anywhere in the literature and that it seems very unlikely to occur since phlebotomies are removing iron from the body. There might be some very rare reactions, but I would take that one as a hard miss for accuracy.

My own experience with long-term phlebotomy-induced iron deficiency without anemia was that I experienced fatigue (decreased energy levels), decreased ability to concentrate, alopecia, and reactive thrombocytosis (PLT range + 200K). In addition, I have noted a decrease in incidents of tachycardia since my iron levels have restored, but cannot clearly link the two issues. I have found multiple references like this in the literature. "Too little or too much iron has detrimental effects on the body and can lead to arrhythmia and blood pressure anomalies." world-heart-federation.org/....

The body uses iron for more than producing red blood cells. Iron is a key nutrient along with potassium, sodium and other vital nutrients needed for the body to function properly. Here is one example of the data the impact of the impact of the iron deficiency without anemia. Some of the information on potential cardiac issues and other adverse effects are noted here. ncbi.nlm.nih.gov/pmc/articl...

This is a bit more of what I have found regarding iron deficiency.

healthline.com/health/iron-...

world-heart-federation.org/...

imm.ox.ac.uk/news/study-unc...

MPN treatment is a balancing act. We always have to weigh the benefits and risks of any intervention we choose to use. Every choice has intrinsic risks. We each can react differently to every treatment option. As other have noted in this post, long-term venesection-induced iron deficiency can have adverse effects. this is what Dr. Silver noted in his presentation. it is also the reason that newer medications like rusfertide are so important to develop. We need more options to optimize MPN care.

Chat GPT is an interesting tool. People are using it to find information these days. We will likely see increased use in the future. I think the best way to use it is to generate a list of issues and questions to check out in more detail. Finding the data that supports (or does not support) the "facts" the ChatGPT produces is ultimately a valuable exercise.

Wishing you all the best my friend.

[Manouche in reply to ainslie]

Hi ainslie,

You wrote: « Cardio risk, really? Never heard of that either, I have heard the opposite though, ie venisection reduces cardio risk »

That’s what the latest version of ChatGPT has to say about that:

« Phlebotomy may have both positive and negative effects on the cardiovascular system, depending on the underlying condition and the frequency and volume of blood removal¹²³⁴. Phlebotomy can reduce the risk of cardiovascular events in patients with polycythemia vera, a disorder that causes increased blood viscosity and thrombosis². Phlebotomy can also lower excessive iron levels, oxidative stress, and inflammation, which are associated with increased cardiovascular risk¹⁴. However, phlebotomy can also cause anemia, hypotension, and vasovagal reactions, which may adversely affect the heart and blood vessels³. Therefore, phlebotomy should be performed with caution and under medical supervision, and the patient's hemoglobin level, blood pressure, and symptoms should be monitored closely³.

Source : conversation avec Bing, 28/05/2023

(1) Cardiovascular benefits of phlebotomy: relationship to changes in .... pubmed.ncbi.nlm.nih.gov/240....

(2) Serious Cardiovascular Events and Clinical Outcomes in Secondary .... ashpublications.org/blood/a....

(3) Clinical applications of therapeutic phlebotomy - PMC. ncbi.nlm.nih.gov/pmc/articl....

(4) Cardiovascular benefits of phlebotomy: Relationship to changes in .... researchgate.net/publicatio....

[Manouche in reply to ainslie]

You wrote: »It says it can lower immunity, ditto to above, never heard of it, some drugs yes but not venisect »

ChatGPT : « Phlebotomy may have some effects on the immune system, but the evidence is limited and conflicting. Some studies suggest that phlebotomy can reduce inflammation and oxidative stress, which are involved in immune regulation¹. Phlebotomy may also modulate the production of cytokines, which are signaling molecules that mediate immune responses². However, other studies indicate that phlebotomy can cause anemia, which may impair the function of immune cells and increase the risk of infection³. Therefore, the impact of phlebotomy on immunity may depend on several factors, such as the underlying condition, the frequency and volume of blood removal, and the individual's nutritional status³.

Source : conversation avec Bing, 28/05/2023

(1) Current applications of therapeutic phlebotomy - PMC. ncbi.nlm.nih.gov/pmc/articl....

(2) The Immunomodulatory Effects of Phlebotomy - Full Text View .... clinicaltrials.gov/ct2/show....

(3) Phlebotomy, a bridge between laboratory and patient - PMC. ncbi.nlm.nih.gov/pmc/articl....

[Manouche in reply to ainslie]

You wrote: « Affects body temp , not me or anything I read or heard »

ChatGPT: « Phlebotomy may have some effects on body temperature, depending on the amount of blood removed and the individual's thermoregulation. Phlebotomy can lower the blood volume and reduce the heat generated by blood friction and resistance in the vessels¹. Phlebotomy can also cause anemia, which may impair the oxygen delivery and metabolism of body tissues, affecting their heat production². However, these effects are usually mild and transient, as the body has mechanisms to compensate for blood loss and maintain a stable core temperature³. For example, the body can increase the heart rate, blood pressure, and fluid intake to restore the blood volume and circulation². The body can also adjust the blood flow to the skin and extremities, and activate sweating or shivering to dissipate or generate heat³.

Source : conversation avec Bing, 28/05/2023

(1) 18.1 An Overview of Blood - Anatomy and Physiology 2e - OpenStax. openstax.org/books/anatomy-....

(2) WHO guidelines on drawing blood: best practices in phlebotomy. who.int/publications-detail....

(3) 18.1 Functions of Blood – Anatomy & Physiology. open.oregonstate.education/....

[Elizka]

Great information!

[lhammy66]

Thank you Hunter, I’ve moved from hydroxycarbamide to hydroxycarbamide plus venesections to hydroxycarbamide plus venesection plus interferon and am now recently controlled almost four years on by interferon alone. However I am afflicted by regular infections visiting hospital for intravenous anti-biotics three times over the last 18 months. Nonetheless my blood counts are now excellent (I was experiencing all three rising rapidly). I also have RLS so iron levels have been an issue for me for some time. However this seems to be the lesser of the issues although my sleep is always restless and really difficult some nights (I have tried every medication under the sun and am finally on clonazepam which seems to be just about holding things at bay mostly). The first serious infection, I had I left until my temperature had risen to 40.2 and my body was in sepsis, EColi throughout the system. That having scared the life out of me especially given that I was told another day and I may not have come through and that I felt really frightened for the first time in my life, I am now more vigilant but still the infections come. I just get to hospital as soon as my temperature gets to 38 degrees. So this information is interesting in terms of being prone to infection. Maybe the removal of hydroxy and venesections from my treatment will enable my infection fighting to revive a little.

[hunter5582 in reply to lhammy66]

Sorry to hear that you have experienced such a struggle. It sounds like you have a very complex case. It is hard to say, but i would hazard that your diminished immune response may have multiple causes. Iron deficiency might be one factor. imm.ox.ac.uk/news/study-unc.... Hydroxy could be another factor. It is hard to sort out sometimes.

You are correct that iron deficiency can be a factor in RLS. I have experienced RLS that was related to magnesium deficiency. It resolved when i normalized the Mg levels.

Wishing you success in sorting out a treatment plan that works for you. .

[lhammy66 in reply to hunter5582]

yes I can see that we are all very individual in our reactions to this condition. I am regarded as complex with a number of co-morbidities which probably doesn’t help. There have been moments where I have clearly given the consultant a few headaches in trying to do this that don’t overly compromise my other conditions but still keep me going. I’ll try your suggestions about diet. Thanks

[hunter5582 in reply to lhammy66]

I also have a complex case with multiple comorbidities. It makes my case very "interesting" - as in the Chinese curse "May you have an interesting life." I told my docs that I want to be "The World's Most Boring Patient." They think that is very funny. Oh well!

[lhammy66 in reply to hunter5582]

ha ha - yes and it’s necessary to find the humour in these things as it prevents madness! I’ve found myself making jokes as a way of coping I guess. Untangling what is causing what is something of a challenge. Good luck to us both.

[ritaandscooter1 in reply to lhammy66]

Hi, are your WBC's too low? I'm on venesections only and rarely sick. Still have not gotten Covid (knock on wood) My husband always say's it's because My WBC's are higher than normal! I do have lower iron levels but it hasn't contributed so far to infections. So sorry for what your going through. Praying that everything works out. Kerry

[lhammy66 in reply to ritaandscooter1]

my blood counts are all now finally in the normal range - WBC had been very high as had, red and platelets. Interesting discussion about lifting iron and magnesium though whilst on interferon. Slowly and via food sounds a good plan to me.

[lhammy66 in reply to ritaandscooter1]

and thanks also for your good wishes

[mhos61 in reply to lhammy66]

Hi ihammy66,

I’m sorry to hear of your history of continuous infections. I know from first hand experience (hubby) the seriousness of this issue, and additionally, the worrying aspect of antibiotic resistance to some infections over recent years. Even when you’ve recovered, it remains unsettling for anyone susceptible to infection.

I was trying to make sense from your post what treatment you have been on in the ‘last eighteen months’. You say you have been on ‘Interferon alone for the last four years’, but then go onto say ‘maybe removal of hydroxy and venesection will enable infection fighting to revive a little’.

For clarification, I am just left wondering if there is any basis that hydrea is implicated.

I understand you have comorbities which will play into this too. It seems your neutrophil counts are ok? In my husband’s case, immunosuppressive medications were responsible for lowering his neutrophil counts and leaving him open to severe infections.

My advice to you is, remain vigilant and be assertive with the medical professionals if needs be. I have had to advocate strongly on behalf of my husband in the past!

Best wishes to you going forward.

[lhammy66 in reply to mhos61]

thank you for this reply. I’ve been on interferon only for one a few months. Previously I was on hydroxy, venesections and interferon although venesections were stopped around May of last year and the hydroxy was removed slowly over a couple of months a few months ago. The 18 months I referred to is the period I have been getting regular infections with three of these needing hospital help. I have been on interferon alone for around 3 months which has now taken over and keeping my blood counts at normal levels. I think I read that hydroxy can compromise immunity somewhat and I think interferon too so going to one treatment may help but I suspect for some people they are simply just more vulnerable than others. I have also continued to work full time throughout and working in a university and researching in schools means that contact with people and travel is part of that life. I am currently negotiating a shift in what I do as I am finding work increasingly hard to do as concentration is nothing to what it was and clearly I’m mixing a lot with people. Unfortunately, despite my work pension not being very high they won’t give me any ‘pay-off’ for an ill health retirement as I’m over 60 and can claim the work pension. However it is not enough to live on until I’m old enough for state pension. So it’s all a bit difficult and I’m having regular sick leave and stressed because I’m letting folks at work down. I am beginning to see that I need to look after myself as regular infection is not good for me, nor are hospital stays on drip anti-biotics. So I’m working with the union to try and find a way through. Stress in itself won’t help I’m sure.

And yes neutrophils have been fine but I will double check on my next blood test. Thanks

[mhos61 in reply to lhammy66]

Got it! Yes, you were being hammered a bit there. Hopefully, the Interferon alone will suit you better with regards to infections. Time will tell, and fingers crossed for you.

In relation to your PV, it’s encouraging that Interferon has induced a complete haematological response for you.

Hydroxy can lower all blood counts including wbc. Therefore, it’s wise to keep an eye on the neutrophils, especially if one is suffering repeated infections. However, from what you have previously said I don’t believe your wbc was negatively affected.

You can certainly do without the additional work stress. And I would say, do not feel guilty about taking time off. Just in case you’re not aware, PV is defined as a cancer which gives you certain rights in the workplace, as long as you share this information with HR. I’m presuming if the union is involved you already know this though.

Good luck x

[lhammy66 in reply to mhos61]

Thanks and yes I have registered myself as disabled. The union is checking that my absences have been recorded against this too to make sure that everything is being done as it should be. I admit to being somewhat worried when hydroxy wasn’t controlling my counts and all were rising constantly (alongside the dose) and even added venesections weren’t helping much. When they added in peg it took about a year before this really kicked in and started work which is why they started dropping out the other therapies by degree. This is the first time since 2019 when all counts have returned to ‘normal’. So it’s taken a bit of time and is a relief I have to say. I just have to hope that slightly raised liver markers don’t rise too far. Then I can maybe be settled in therapy terms. My fingers are firmly crossed. Thanks again x

[MWxxxx]

This is really interesting - mainly, for me, it describes the symptoms of being iron deficient as oppose to anaemic, which I have never really understood before . I don't believe in my case this was due to venesections. It was how I was diagnosed. I was suffering from all of the symptoms described in your post and my GP gave me several courses of iron tablets as my blood tests showed although I wasn't anaemic, I did how low iron stores. This of course sent my blood count way high and I ended up having a course of venesections. I can't remember how many - may be about 6? This was in 2017 and I've not had one since. The venesections did send my platlets out of control temporarily but they stablised. I am now on aspirin and hydroxy with poorly managed white cell count. I am also still iron deficient and still suffer from all the symptoms listed. Every few months when I can no longer cope I am given a very small short course of iron tablets which brings my stores up without compromising my red blood count which generally makes me feel a bit better for a while.

From my point of view I find the list of symptoms for iron deficiency reassuring. I have had haematologists who recognise and have sympathy for my difficulty in coping with these symptoms but I have also come across haematologists who have said that even though my iron stores are low, I am not anaemic so should not be experiencing symptoms.

[hunter5582 in reply to MWxxxx]

Iron deficiency is quite common for people with PV. The KISS version is that our bodies use up all the available iron to crank out RBCs. There are most certainly potential consequences to iron deficiency without anemia. PV can be understood as an iron dysregulation disorder. nature.com/articles/s41375-...

It is a bit surprising that a hematologist would think the iron deficiency without anemia would have no symptoms. It would be fair to think that iron decency anemia would have even more symptoms however.

Glad to hear you find the information reassuring. These issues are not always well understood. it is important to find validation of the symptoms we experience.

All the best.

[Sanga]

hi hunter

Thank you as always for your useful post.

I have a question for anyone out there, who may have an answer.

Having been iron deficient for 7 years now due to this being the treatment for my PV, I’m now on interferon and aspirin. This has been successful in getting all my blood counts consistently within the normal range 🙌.

What have others done when on interferon to get their iron levels back up to reduce the symptoms describe here. All of which I experience.

Many thanks

Sanga

[Looolooo in reply to Sanga]

Once peg was working I was allowed a month's course of iron tablets. Hct didn't rise but hmb did and all nasty side effects of venesection disappeared.

[hunter5582 in reply to Sanga]

I chose to improve iron levels through diet-only. Iron is not readily absorbed by the body, so this takes time and patience. Over time, it does work. Understanding a bot more about iron physiology can be helpful.

youtube.com/watch?v=ahCy97F...(Not working as expected?)

[Sanga in reply to hunter5582]

thanks hunter v v useful

Sanga

[PupsBestFriends in reply to Sanga]

After Besremi brought my blood counts under control my hematologist started me on iron supplements every other day and ordered iron tests to be completed every other month. He stated that symptoms sometimes improve with sufficient iron levels.

After about 5 months my iron stores were adequate and I was told to stop taking the supplement since I no longer have phlebotomy and my iron levels should remain stable.

However, I have not yet experienced any change in my symptoms since this has happened. I still have severe dizziness, fatigue, brain fog, and shortness of breath with any activity and sometimes while at rest.

It's worth pursuing with your hematologist though, since there's little risk and possible benefits. Best of luck.

[Innessant]

The problem is similar to being scared by reading all the potential side effects to any medication. Effectively you ask for a list of side effects. The fact is that "satisfied customers" (the majority in most cases) rarely complain. I have had 10 years of venesections and personally like the simplicity of drug-free treatment, as well the fact that I am still alive and well. Aspirin is the exception. Run the same query on any condition and you would be scared....

[hunter5582 in reply to Innessant]

That is 100% correct. Every treatment option we have comes with risks and benefits. We each respond differently to each option. What matters is that we understand the risks and benefits and know how to manage them. There is not one right answer for everyone.

[Innessant in reply to hunter5582]

Yes,agree. You are mainly challenging the historic deference of most patients to their Doctors, which is good in my opinion.But both of us are still alive and well partly because of modern medicine. I think that we so often take this for granted.I am convinced that I would be dead by now if born in an earlier era and before most modern medicines and analytical tools.

[Looolooo]

Yes had dreadful hair, couldn't walk up a hill, restless legs and arms, tired. All gone now with Peg.

[mark382]

Thanks Hunter. Very simple comprehensive summary. I have Ferritin level of 3 or 4 and have haemoglobin of 116, but has risen to 122 over last 6 months. Can certainly relate to some of the issues listed above. PV for 15 years on Aspirin and venesections.

[Hidden]

Hunter, thanks for posting this. It’s helpful to learn about long term symptoms that develop due to treatment options. Stay well!

[saltmarsh]

Thanks Hunter for the post. This was exactly my experience with phlebotomies. Last summer I switched hematologists and we stopped the phlebotomies entirely, relying on HU which did a great job of controlling the blood numbers but is not the best for my digestive tract. Other than that I am feeling great.

My doctor likened phlebotomies to driving a car with one foot on the brake and the other on the gas. I know there is a place for them but my experience is that it is best suited for short term use.

This is a very good article and I personally support the points made.

[KLCTJC]

Thanks Hunter! Great info. Phlebotomies always mess me up afterwards because my platelets go bananas. It affects my periods.

[mfh7]

This description of the effect of phlebotomy is consistent with my experience after five years of monthly phlebotomies. Ultimately it took its toll and depleted my energy and raised my platelets to 1500. This contributed to my decision to start besremi 14 months ago at age 55 as a “low risk” patient. The besremi has normalized my platelets and decreased the rate at which my hct becomes elevated although I did not get the immediate response I would have liked in terms of eliminating the need for phlebotomy. I now get a phleb every 2 1/2 months but even that delay has dramatically improved the way I feel and my energy level. I am able to return to normal exercise and renewed energy levels. Per my doc, the problem with long term phleb is you tend to spend more time about 45 hct before the phleb which arguably increases the risk of a clot, depending on the patient. To each his own and everyone responds differently but this is my experience. Now at 500 mcgs hoping for remission and elimination of the need for phlebotomy. MPN Doc says this is still possible and sometimes interferon can take one or more years to take effect. However even if the interferon just slows the rate at which my hct elevates it has still been worth it for me so far. Best of luck to all!

[ritaandscooter1]

Hi Hunter,

Once again there are two types of thinking when treating PV. One from the Dr. Silver camp and another from the Rochester Mayo clinic. I am treated by perhaps one of the best MPN specialists in the nation from Mayo. You list a huge long list of negative effects of doing venesections only and I can personally list a huge list of the negative effects of interferons and HU. As an individual with low risk PV the effects of both drugs were toxic and the list of adverse effects are just as long as the ones you mentioned for venesections only. I've done amazingly well for 20 years on low dose aspirin (2 daily) and venesections every 3-4 months.

Recent BMB also demonstrates that this treatment option has been very favorable for me as an individual despite high AB over 90%. My MPN specialist unlike Dr. Silver does not put a lot of emphasis on the significance of lowering the AB. The BMB showed no further fibrosis, no progression and no other adverse driver mutations.

In terms of Iron or anemia, sure it is a balancing act making sure I'm not anemic or too low on iron. Have a routine down to make sure that is not getting too low. Sure I have on and off fatigue but nothing like I felt on INF. Yes I do take Iron supplements periodically.

Hair has broken off more than normal but it could be aging involved as well as age (62.) My hair literally fell out with INF and HU. I'll take the little breakage I get. Luckily I have thick hair healthy hair.

Exercise: As I mentioned in past posts, exercise I believe is my biggest treatment or medicine for PV. I've worked out vigorously since I was 18 years old and still workout 2 hours or more everyday. Of course I'm not as fast as when I was in my 40's or 50's but can still swim 4000 yds a workout at a good pace. My heart and BP are in great shape and have very minimal PV symptoms which I contribute to exercising my whole life. When I was on very low dose INF, I could hardly drive to the pool!! Yikes!

Temperature tolerance: I do so much better in 80-90 degree dry weather and love the sun but still spend a lot of time in my hometown of Alaska were it can be very cold, wet and gloomy. Have not seen a change in regulating temp. Mentally I need more sunny days than gloomy.

Just remember, we all are different with how PV effects us as individuals and how the different treatments effect us. There isn't ONE clear cut treatment as of yet that is proven to cure all of us. When that comes out I'll definitely go through the rigors & pit falls of that drug to be cured. INF works great for you and many others which is fantastic but for many others the drug is very toxic and QOL is horrible.

Our readers need to hear both sides to treatment as we all respond differently to these various treatments and how PV effects us individually. I have several doctors that work together to monitor my numbers to ensure all the bases are covered. This is critical regardless of what treatment plan you are on.

Best to you, Kerry

[hunter5582 in reply to ritaandscooter1]

That is a great assessment of how we each need an individualized treatment plan based on our unique MPN profile. You are quite correct that the list of potential adverse effects from the IFNs or HU is quite long. Some people cannot tolerate the cytoreductive meds at all. Some have very serious adverse effects from these meds.

What matters most is fully informed consent when we are making treatment decisions. This is a key component of the ethical practice of medicine. We need to have complete information about all of the risks as well as the benefits of any choice we are going to make. This includes risks that may be rare but could have significant negative impact. Patients cannot make a valid decision in the absence of information about all of their choices.

We each need to be clear about our treatment goals, risk tolerance, and treatment preferences. This is the basis for all decisions we make together with our providers. When we make fully informed shared decisions with our providers, we can achieve the optimal outcome.

Wishing you all the best on your MPN journey and continued success with your treatment plan.

[ERei]

Thanks Hunter. This was very helpful! My MPN doc keeps saying I'm "complicated". I am Jak2+ with a very low allele burden but my BMB was essentially normal. I am classified as MPN-U although my MPN doc has said he considers me to have PV. I haven't had a phleb in 2 years & had 4 phlebs in the 2 years prior to that. I am on HU every other day in addition to aspirin. I had iron deficiency anemia 2 years ago that required IV iron as I was highly symptomatic (short of breathe, fatigue, & palps). I had a complete GI workup that was negative at that time. I improved after that but about 6 months or so ago I've been told I'm anemic again. I had another complete GI workup that again showed no GI bleed. My GI doc & hematologist believe the anemia was due to being on PPIs for years for my reflux. I have since been able to drastically reduce my intake of PPIs. My hematocrit, hemoglobin, & iron are now only slight below normal but I have no iron stores (ferritin =2 or 3).

[hunter5582]

Long term use of PPI can cause nutritional issues. It causes magnesium deficient for me, requiring supplements to keep my Mg WNL. Iron levels could be particularly low if you have PV (which often has low iron) compounded by not being able to absorb enough iron through diet. due to PPIs. It makes things really complicated when the PV is trying to use all the available iron to make RBCs but there is not much iron there. Then you can end up with erythropenia despite having PV. It is a conundrum.

I would also wonder about something like iron-refractory iron deficiency anemia (IRIDA). IRIDA is a hereditary condition that results from changes to the TMPRSS6 gene. medicalnewstoday.com/articl... That is not to say this is what is going on, but I would be curious about a possible co-occurrence of something like this. Note that I do have two mutations to make life more interesting - JAK2v617f and NF1:c5425C>T. I could do with a more boring profile.

Wishing you lots of medical boredom.

[shiftzz]

After 5 years of aspirin. Hydroxycarbamide and over 60 venesections my consultant stopped venesections, she had read my file and said that I had too many, the normal registrar in the clinic would simply send me for another venesection, he was on autopilot.

Since then, I'm on interferon and not had a venesection in over three and a half years. I'm only on aspirin and interferon.

I'm still tired, brittle nails etc...

[hunter5582 in reply to shiftzz]

Have you had a full iron panel done recently? It is relevant to managing PV and should be periodically checked. When I was over-phlebotomized my HCT got down to 32%. It was bad enough that my hematologist actually put me on iron supplements. After a few weeks, I moved to just letting my body recover from dietary iron alone. It was a gradual process, taking over a year on an iron-rich diet. Iron is not readily absorbed by the body, so it can take time to recover when one is severely iron deficient.

The fatigue can occur for other reasons, including the PV itself. Looking at your overall health issues, including other nutritional deficiencies can be very important to managing fatigue, I am also Vitamin B/Folate and magnesium deficient. These deficiencies can have their own adverse effects. You may want to consider a full nutritional evaluation to ensure that you know exactly what is going on.

Wishing you all the best.