It has been now 3 years with ET diagnosis. Lot of reading about MPN’s behind me, especially through this network of wonderful people. I am now seriously considering starting Pegasys and reserved today an appointment with my specialist to discuss how we would go about it.
In my country this line of treatment is not standard for low risk ET. I would need to wait another 12 years, to turn high risk and then they could consider IFN. Or get a blood clot. I don’t want to just watch and wait.
I would like to start with lower dose, if that makes any sense. 45 every other week for instance. I wonder if someone has had success with such dose?
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Bigcheat
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Bigcheat
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There is not a black and white answer to your question. While there is evidence to support starting IFN earlier for low risk PV, there is not any evidence for doing the same for low risk ET. Low risk is a relative term though. ET can cause significant symptoms well beyond thrombosis. These symptoms require intervention when needed. PEG can help with symptoms for some who use it.
There is also the hope that PEG may reduce the risk of progression. There is still active debate on this potential benefit at this point. Some doctors would not recommend an IFN based on this goal.
The decision to initiate cytoreduction is in part based on the treatment protocols; however, one size does not fit all. the decision is also based on your treatment goals, risk tolerance, and preferences. Shared decision making is the key to making good decisions on a case by case basis.
Came back from the doc and he thought starting Pegasys could make sense for me. But then he also said that I am suffering iron depletion, since my plasma ferritin was 55 ug/l and iron staturation 23%. And that it would make sense to start iron supplement to see if that takes platelets downwards before I go on Pegasys. I am a bit hesitant what to do now since iron is said to be harmful too. Is low ferritin symptom of ET or cause for my elevated platelets, is the question and is it wise to start iron tablets or not?
It s true that iron deficiency can cause reactive thrombocytosis. It is also true the low iron levels are common with PV; not, however, with ET. Iron supplements are normally contraindicated for PV but not for ET, where iron deficiency can be treated with supplements when indicated. Understanding your current iron numbers requires that you look at all of the values on your iron panel.
Here are the tests on common iron panels
• Serum iron. This test measures the amount of iron in your blood.
• Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
• Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
• Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
• Transferrin saturation. (AKA iron saturation) This test measures the percentage of transferrin that is attached to iron.
I am afraid I do not understand why your doctor indicated that your iron levels are low. According to the reference ranges at my lab, your iron levels are are within normal limits. Suggest that you look at the hard copy of your iron labs or look it up on your patient portal. This should include the reference range as well as your actual values. I attached a copy of what an iron panel historic view looks like when printed from my patient portal. Once you have reviewed the information you can speak to your doctor for clarification.
Perhaps you should consider getting a second opinion from a MPN Specialist. This is a significant step in your treatment. It would be prudent to make the most informed decision possible. Here is a list just in case you have not seen it. mpnforum.com/list-hem./
Thing is I live in a small country and it is very hard to find MPN specialists here. My doc is a hematologist and has treated many MPN patients in the past, but not recently as he has a private clinic now. He is a bit unorthodoxe when it comes to iron deficiency and is challenging the reference values saying they are generally off and problem is more wide that generally is acknowledged. So even though 55 is in range (20-195) and 23% in (17%-52%) he still thinks there is deficiency and men with those values are typically symptomatic. Target level is above 100 he says.
Not sure what to say about that theory on iron levels. Perhaps to look/ask for evidence to support that theory. Good decisions are based on evidence. You will have to decide for yourself what an appropriate iron level target should be. Your body - your choice. It is the same issue with starting PEG sooner rather than later. If you feel that based on the evidence pursuing PEG now will best meet your treatment goals and risk tolerance then it is your prerogative to pursue your treatment preference. Perhap seeking a second opinion would be prudent at this point.
Interesting paper. I am not sure how this finding with PMF would bear on your situation as an ET patients seeking to reduce risks of thrombosis and/or progression. The dynamics of iron metabolism in this situation would appear to be different than in your situation. I think I would go with the idea of seeking another opinion on your current situation.
Please let us know what you learn and how you get on.
The leading MPN Specialist in Denmark, Dr. Hans Hasselbalch, (see below) points out the earlier interferon is started the more likely that low doses that are easily tolerated will be effective in reducing the Jak2 tumor burden to undetectable or near undetectable (Minimal Residual Disease) and keeping it suppressed for years to decades. However, most hematologists around the world will not prescribe interferon to ET patients for the purpose of slowing or stopping disease progression, but only for the purpose of reducing an elevated platelet count. youtu.be/TIlzFKLtj0k
I have thankfully responded very well to PEG. I started with 90 every other week with platelets over 1.5 million when I was first diagnosed and within 6 months of using PEG they went down to 450 where they are currently stable now being on 45 every 3 weeks. I know everyone responds differently to each medication but just wanted to share my experience with it. Good luck on your health journey.
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Starting on Pegasys
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