Recently diagnosed with PV

[DariBee]

Hi everyone,

this is first time I am posting here. I am a member of this forum already few months and I am really happy I've found this forum with all these useful information about MPN. I come from and live in Slovakia (sorry for my English, I am not a native speaker :)) I was diagnosed with PV Jak2+ in January this year in my 36 years during a routine check at GP. I already had many symptoms for the last year, such as: continuous headache, eye migraines, double vision, red eyes, itchiness...I thought most of the symptoms were connected to my neck spine pain. Unfortunately not. It was quite a shock for me when I was told I have this disease and when searched for information on internet and read about prognosis and length of life (firstly I found 15 years or so). Later I was told by my hematologist that she has patients with this disease who have been treated for 30 years and the length of life can be almost the same as for healthy people. So I calmed down a bit. We started with few erythrocytapheresis to get me into safe zone with my blood counts (my hematocrit was 0,67 and platelets 530 at the beginning). Later I started to take interferon for about 2 months and then after approval by health insurance company it was switched to peginterferon. My hematologist didn't have any experience with peginterferon so far and she prescribed me full dose 180mg per week at the start. I was a bit worried to have such a high dose straight at the beginning, as I read on this forum patients usually start at 45mg and then it is increased to 90. I tried to discuss the dosage with my doctor but she didn't like it very much. In our country, some doctors still behave like what they say is sacred and there is no discussion about it with the patient.

The dose 180mg was too toxic for me so we later lowered it to 90mg weekly. It is much better now. Still fighting with fatigue and brain fog but headaches and most of the symptoms disappeared.

I would also like to ask a question. Is anybody here with PV taking some iron supplements? My iron is low and my doctor prescribed me to take iron. But last time when I took it regularly for about 1 month my hematocrit went up from 0,46 to 0,53. So then I stopped taking it and my hematocrit improved back. But now my iron is low again at 6,5 and my doctor said to start take the iron again, but I am afraid it will increase my hematocrit again. So I am not sure what to do.

[hunter5582]

Welcome to the forum. Glad that you found your way here.

There are several questions to address from your post. You are correct about the dose of PEGylated Interferon. Assuming you are using Pegasys, then 45mcg is a typical starting dose. Many people titrate up to 90mcg. Some may even need a higher dose. Here are two references in the literature regarding dosing.

chemoexperts.com/peginterfe...

nssg.oxford-haematology.org...

I would suggest reviewing these references with the hematologist. I would also note that assertive patients receive higher quality care. Passive patients do not. If the doc does not like that - too bad. The doc can just get over it.

Regarding iron deficiency, this is normal or patients with PV. Our bodies use the available iron to make red blood cells. If you take more iron, you will make more red blood cells. The only time a PV patient should take iron supplements is when the treatment overshoots the mark and you become anemic. (Note that iron deficiency and anemia are not the same thing). This did happen to me. The purpose of the phlebotomies is to make you iron deficient to control the erythrocytosis. Some doctors do not understand this and react to the low iron levels as though you did not have PV. You are quite correct to think that iron supplementation is likely not a good idea. It will just mean more phlebotomies or more Pegasys to control the HCT.

FYI - I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I am still doing well and have a good life despite a few challenges from time to time. It is true that many people with PV can live a nearly normal lifespan. I do not worry about longevity. My focus is on living a high quality life for as long as I can. All of my treatment has this goal.

All the best to you.

[DariBee in reply to hunter5582]

Thank you hunter for encouraging words ...and also for the links about the dosage. I've spent hours googling these kind of information before and didn't find anything usable.

Regarding the iron - I am not anemic, my hgb is 160g/l so I'll try to discuss the iron supplements with my hematologist again. The thing is I feel tired and I've also lost half of my hair during last 2 years and wonder if it is due to low levels of iron or the treatment by pegasys or the disease itself.

You are right patient should be assertive. I will be on my next appointment

Such a long time you are living with the disease, you must have experienced a lot already.

I like your attitude on living a high quality life for as long as you can

[hunter5582 in reply to DariBee]

Iron deficiency without anemia is not only common in PV, it is the intended treatment goal; however, iron deficiency can have adverse effects. Fatigue, difficulty concentrating and alopecia (hair loss) can all result from the iron deficiency. Pegasys can also cause fatigue and alopecia. Fatigue is also the most common MPN constitutional symptom. It can be hard to figure out what causes what. Sometimes we just don't know.

The reason I decided to start on Pegasys is that I was finding the iron deficiency symptoms so bothersome. The phlebotomy-only strategy was not meeting my treatment goal to maintain the highest quality of life possible. My iron levels are coming up and my blood cell levels appear to being adequately controlled at 45mcg/week. I am not having any adverse effects and my iron levels are coming up without a spike in HCT.

Hope you get it all sorted out ASAP.

[DariBee in reply to hunter5582]

Interesting, I didn't know iron deficiency without anemia can be the treatment goal. It looks Pegasys is working perfect for you. That's great.I think I'll wait and see how Pegasys will work over time. Thanks

[hunter5582 in reply to DariBee]

I think that would be a good plan. It is the same plan I have. Hope things go well for your your treatment plan.

[Oscarsboy in reply to DariBee]

Always encouraging words and information.

[neela2020]

I had all the symptoms you mentioned and that led to know I was MPN PV. Now I am treated with hydra and I am doing well. Hope you will find the treatment which suits you soon. Stay positive and calm.

[DariBee]

Thank you neela for sharing. That's good you have found suitable treatment for you and feel good. For me the only suitable treatment is Pegasys because I would like to get pregnant so hydra was out of question from the beginning... and I've been told by my doctor that even the venesections are not recommended during the pregnancy.

[Susana7]

Hi and welcome to the forum. I also have PV, diagnosed in 2014 and have been on Pegasys since 2015. I started at 90mcg and reduced to 45mcg after a year (and have varied the injection frequency depending on how the counts are doing, am currently injecting weekly but have had periods injecting every 2 and every 3 weeks). I had hair loss at 90mcg but it stabilised after a while and stopped when I reduced the dose to 45mcg, so the situation should improve over time especially if you are able to further reduce the dose at some point when your counts are stable and in normal range. I took a supplement, Biotin 10,000 mg tablets, daily and it also helped. Iron supplements are a bad idea unless absolutely necessary as your hct will rise as others have noted. Pegasys has been great for me, I lead a normal life with minimal side effects - I hope it works very well for you too. Susana x

[DariBee in reply to Susana7]

Hi Susana, these are interesting information, hope my blood counts will stable soon and will be also able to reduce the dose to 45mcg after some time. I'll try biotin too. It's great you are doing well with Pegasys. Thank you for advise.

[MPNBlog]

Hi DariBee. It sounds like you need a more informed doctor who is an MPN specialist. If you have such a choice you need to change as soon as you are able. I do hope you have a choice. You should have been started on 45ug of Pegasys weekly, and your blood results and symptoms should have been monitored closely to decide if the dose needs changing. You certainly should not be taking extra iron - as you've already seen, your Hct will go up and you will need a venesection. The purpose of treatment is to make you iron deficient so you don't make too many red cells - taking iron will have the opposite effect. I do hope you are also taking low-dose aspirin daily. This helps to stop forming any clots that could lead to other complications typical in PV. This forum has very useful information, so stay in touch and look after yourself. Best wishes.

[DariBee]

Hi. Yes I am really thinking about changing the doctor. But not sure if there is any MPN specialist in Slovakia. Slovakia is quite small country. I tried to google somebody but didn't find exactly any MPN specialist. I'll try to investigate more. I do take aspirin every day. Thank you for your advice. Really appreciate it. Best wishes to you too.

[Hollyhedge]

Hi DarBee. I also have PV. My haematlogist tells me each time she speaks to me NOT to take iron supplements as my haematocrit will go up. I tell her that I try to improve my anaemia by eating a diet high in iron. Hope this helps you. Best wishes 😊

[DariBee in reply to Hollyhedge]

Hi. Thank you for sharing. I'll try to eat food rich in iron too and no iron supplements. Best wishes to you too 🙂

[Hollyhedge in reply to DariBee]

Xxx