Pegasus, Hu and Iron

[lhammy66]

This is my first individual post. I am PV Jak 2+. I’ve just started Pegasus as HU had not yet stabilised my bloods (after two years of increasing treatment) and the more I took the more the side effects were taking a toll - although it’s something of a challenge distinguishing between the effects of HU and the effects of the condition itself). I have only experienced slight increase in sweats and redness around the injection site which I’m hoping is normal? I’ll be taking both together for the time being and seeing how we go. I also have issues with anaemia as this affects my restless leg syndrome but as my haematocrit had got to .49 I had my second only phlebotomy but a reduced one to try to take this down but not drain my iron too much further as the restless leg, as it gets worse, interferes with my ability to sleep. Bit of a catch 22. I’m really hoping that Pegasus helps get my bloods under control and for this to stabilise as the lack of stability is a bit scary. I’ve also had my spleen rechecked this week and all looks ok there. I’m one of those for whom red, white and platelets rise. Just wondering if anyone else out there has had similar experiences?

[Hopetohelp]

Redness around the injection site is normal. Mine stays there for at least 2 weeks. Good luck and hope Pegysus helps stabilise the bloods

[lhammy66 in reply to Hopetohelp]

Thank you.

[lhammy66 in reply to Hopetohelp]

The only noticeable symptoms I seem to have had from my first jab is increased sweats and a reaction to overly sweet food (as in feeling nauseous) - no bad thing in my case. I assume the drug builds up in the system a bit over time so will be interested to see if other side effects become apparent? I am hoping it will be effective enough to reduce the hydroxy dose or even replace it.

[hunter5582]

Glad to see you made your first post. Welcome to the forum.

You will find lots of people here with similar experiences to what you report. It is often hard to sort out what is the medication and what is the MPN when the symptoms overlap. Some things like asthenia (fatigue) are common to both the MPN and the meds used to treat. The best clue is when did the symptom begin, before or after the med.

Phlebotomy is one of the most basic of treatments for PV. It temporarily reduces the viscosity of the blood as the whole blood is replaced by plasma. More importantly for controlling erythrocytosis, repeated phlebotomies induces iron deficiency. this is intentional as you body needs iron to make red blood cells.

Iron deficiency and anemia are not the same thing. "Anemia is caused by lack of Hemoglobin. Iron Deficiency is caused by lack of Iron. Iron Deficiency with Anemia is caused by both a lack of Iron AND a lack of Hemoglobin."

ironology.life/blogs/news/y...

You can be iron deficient without being anemic. That is the intent of phlebotomy. Sometimes treatment overshoots the mark and someone with PV can in fact end up anemic. My HCT ended up at 32% at one point. It is a balancing act to get it right.

Iron deficiency without anemia can still have significant symptoms like fatigue, concentration issues, alopecia and leg cramps. The symptoms of iron deficiency are why I decided to move from phlebotomy-only to treatment with PEGylated Interferon.

Note: I did also have leg cramps at night which were quite painful. Turns out I was significantly magnesium deficient. Magnesium supplements solved the problem completely for me. Suggest having your magnesium levels checked if you have not already done so.

Hope that helps.

[lhammy66 in reply to hunter5582]

That’s really helpful as magnesium can be an influence RLS in terms of reduction of symptoms so I’ll get that checked. I hadn’t thought about lifting this as a separate thing that would be possible with MPN. It would be lovely to be able to get a decent nights sleep without kicking myself awake. Previously high ferritin has been the answer but that’s clearly problematic now. Concentration issues (brain fog) happened with hydroxy at 1 to 1.5 grams which is a bit of a snag for an academic. I’ve also already lost about half the thickness of my hair but luckily it was much thicker than many so it’s not too bad by most peoples standards (although I miss my masses of long curls). Fatigue has been a constant companion for around 15 years so I think I’ve had this condition for a while. It took a change of doctor before it was taken seriously and luckily he persisted in making sure I had every cancer test known and referred me to haematology several times before they finally took it seriously. Once in they have been brilliant and now because of this persistently escalating count I’ve been sent to the Christie central team. I’m hoping interferon does the trick.

[hunter5582 in reply to lhammy66]

Checking magnesium levels would likely be a good idea. When I was checked, it was determined that I was Magnesium, Vit B/Folate, and Vit D deficient. It is quite simple to check on your nutritional status nd it is something than can make a bog difference.

[lhammy66 in reply to hunter5582]

Will ask to have this checked. Thank you.

[lhammy66 in reply to hunter5582]

Oh and yes it looks like I am iron deficient then although the word slightly anaemic was used by one of the medics.

[hunter5582 in reply to lhammy66]

"Anemia is caused by lack of Hemoglobin. Iron Deficiency is caused by lack of Iron. Iron Deficiency with Anemia is caused by both a lack of Iron AND a lack of Hemoglobin."ironology.life/blogs/news/y...

Iron deficiency w/out anemia is the goal of PV treatment with phlebotomy. It can be a real balancing at to get things right.

[lhammy66 in reply to hunter5582]

Yes I'm begining to realise just how many challenges are involved.

[neela2020 in reply to hunter5582]

I am MPN PV and my Hb is 13.1. My iron level is also ok. It seems I have drug induced anemia (low RBC) ( it read as Macrocytic normochromatic with anisocytosis in my blood report) . It is very confusing MPN PV and anemia.

[lhammy66 in reply to neela2020]

Yes indeed it is.

[hunter5582 in reply to neela2020]

That happened to me when we over-phlebotomized me. My HCT ended up at 32%. It is possible for PV treatment to overshoot the mark and for you to actually become anemic. I had a lot else going on at the time so after a few weeks of prescribed iron tabs, I elected to just let my body recover on its own.

I think you may have already heard that macrocytosis is normal when you are on hydroxyurea. It sounds like you have low RBCs with normal HGB. Suggest asking your hematologist to review how the hydroxyurea is working in your body and what makes the most sense next.

[lhammy66 in reply to hunter5582]

Thanks but my blood counts are all high so it was an inaccurate description for low iron. Maybe generalised to common speak but they should have been clearer like your definition was. I don't know - we have enough challenges without medics using inaccurate terms! Ha. Maybe just not thinking through and giving an off the cuff response!

[hunter5582 in reply to lhammy66]

I hate it when that happens! I insist ally docs use accurate medical terminology and ask for definitions when needed. If males for far more clear communication.

[lhammy66 in reply to hunter5582]

A very good approach to take. I usually question but thought I had understood as I hadn't known the difference. It shows there is a need to ask even the seemingly obvious questions. Thanks

[givingITMybest]

I just came across this post and want to thank you for bringing up RLS issues and keeping ferritin levels, magnesium up to help calm legs. My legs are wild some nights. I have ET and was taking Hydroxy. My hair thinned, increased fatigue, blooming in skin cancers and brain fog all issues eventually. I'm currently off any meds waiting for my platelets to get high enough to begin a study of IMG-7289 for ET patients. Otherwise I'll begin Pegasus at some point. I'll be interested if knowing if your RLS responds well to anything in particular. It is difficult to control. Thank you