I’ve been reading different studies about this and most of them says Interferon is advisable for younger patients and for pregnancy but current practice is using Hydrea as a first line of defense instead of Interferon?
I would love to hear your experience about this. I’m still on a low-dose aspirin but I’m just reading about it in case I need to take either in the near future, like everyone, I’m concern about the effect of hydrea on my pregnancy or sexual life if I may add. I’m 29 and having kids is not a priority now but of course that might change in the future so I’m considering my options but of course I can only discuss it with my doctor but if Interferon is not a first option for medical experts, I can’t do anything about it.
I was hoping I can get by with low-dose aspirin all my life but is that even possible? Haha, with my platelet on 1600+ now, which is kinda worrisome but since I feel okay my doctor said if in the next blood test it goes to 2000+ I need to consider taking Hydroxurea.
Let me know what you think.
By the way, it’s nice to have people to talk about this kind of things so Thank you everyone.
UPDATE:
so I just got back from my doctor, fortunately he hadn’t require me yet to take meds other than aspirin because my platelet gone from 1600 to 1500 so thank God.
But I open it up to him he does suggest interferon his reason for not making it the first choice is because the interferon injection here in Singapore is expensive plus Hydrea have more supporting studies and more cheaper. Anyway, I hope I can keep may platelets lower at the same so I can avoid taking either in the next few years until a cheaper option comes out. Stay healthy everyone!
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livelovelaugh1992
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Hi. I am in a different situation to you, but also having the same consideration. I take hydroxy and get on with it ok. It keeps my platelets and RBC in check and all counts are stable, but my WCC is very high and my spleen is enlarged. I don't seem to suffer too badly with fatigue so Hydroxy allows me a normal life. However, from what I am reading, Interferon seems to be more proactive in working with your body better than just killing off cells, which is whatHydroxy does. I have always been put off Interferon by my specialists because of the potential side effects but I want to be around for a lot longer and wonder if it is the better option. It is a discussion I am planning to have at my next appointment. I think if you decide on having children, hydroxy would not be recommended during that time. Good luck with your decision.
Peg is the preferred option if you are thinking of having children and my haematologist said there is a very small chance that it can put you in remission which is always a great hope even if it doesn’t happen. I have very few side effects with Pegysus but some here can’t tolerate it but definitely worth talking it over with your haematologist next time. They offered me hydroxy at first but I said no and that I wanted peg and they immediately agreed. You need to put your point forward as it’s very expensive. Considering myself lucky and am very grateful to have the choice. Good luck
Hydroxyurea and PEGylated Interferon are both first line choices for ET and other MPNs. It sounds like you already know that PEGylated Interferon is the preferred choice for younger people with MPNs. There are multiple reasons for this.
For those of childbearing years hydroxyurea is not a favorable choice. HU is a known mutagen. It is a pregnancy Class D drug (positive evidence of human fetal risk). For males, HU can cause hypogonadism (infertility) which is usually, but not always reversible. There is some evidence that HU can reduce testosterone in the research, but this is not an accepted clinical finding. When HU is used, women must wait 6 months after discontinuing to get pregnant. Men must wait 1 year.
HU has several specific risks associated with long term use. Skin cancers and other alteration to skin is one set of risks. Long-term use of HU also appears to increase the risk of leukemic progression for people with MPNs.
If you need to start cytoreduction at a young age, most MPN Specialists would recommend PEG over HU for the above reasons. Some MPN Specialists (mine included) recommend PEG over HU for all patients.
It is important to note that we each respond differently to these medications. "Hydroxyurea is a highly toxic medication with a low therapeutic index." American Society of Health System Pharmacists. Despite its toxicity, some people tolerate and benefit from it. Some. myself included, simply cannot tolerate HU. I experienced toxicity even at very low doses. I am now taking Pegasys. It is doing an excellent job controlling the thrombocytosis and erythrocytosis. At 45mcg/week I have experienced no adverse effects at all. Not everyone is so fortunate. Not everyone can tolerate PEG and there can be significant adverse effects.
You have been given a number of links already. Here are a couple more that may be helpful.
If you need cytoreduction, it is your choice whether you use PEG or HU. It is your goals, priorities, risk tolerance, and preferences that must drive this decision. Your hematologist should educate you about your choices then support your decision. This is a major decision and you may want to get a second opinion from a MPN Specialist. Most hematologists have little/no experience treating MPNs and an expert opinion/2nd opinion is in your best interests. Here are two lists of MPN Specialists.
I'm on Ruxolitinib now but I am old (79) and took Hydrea for many years for PV, now moved on to Myelofibrosis. I started with phlebotomies which worked well for the first few years. But PV started at age 67 so I am totally different. However, I might point out that baby Aspirin caused me stomach problems. I am now on Apixaban blood thinner as I developed atrial fibrillation and that seems to have resolved the stomach problems. You might be fine with Aspirin, but be aware of the risks to the stomach lining. I always took the coated Aspirin but that made no difference.Good luck and just take the advice of a good haematologist, if not satisfied, get a second opinion.
Hi, I've was diagnosed with PV Jak2 around age 42 and took a low dose aspirin daily with a phlebotomy every 3 months or so when HCT reached 45. My platelets hovered around the same as yours but I was considered stable as numbers stayed the same for years. It all depends on your risk factors. I had very low risk factors.....no history of clotting, really good physical health and have always exercised daily. I also didn't have any symptoms from my blood counts. When I turned 60 last year, my hematologist considered the age a risk factor, although I'm still in great health with no other health problems. He wanted to put me on HU but I had done enough research to know this was not a drug I wanted to take. I'm now on very low dose Pegasys (22.5mcg) weekly. Had a teleconference though with my MPN specialist recently and he said, he would have me on NO drugs. He recommends 2 low dose aspirin a day with the periodic phlebotomy. You are way too young to go on HU but you need to talk to a MPN specialist. Good luck with everything.
Did he explain why he wanted you on no drugs ? What’s the rational behind this decision knowing that the JAK2 allele burden increases in the absence of cytoreductive treatment ?
I would have thought given your age Interferon is definitely your first option.I took Hydroxicarbomide for 6 years. I switched to Peg a few months ago. Love it.
That’s not to say hydroxi shouldn’t be considered. It’s all dependant on body tolerance. I think for me hydroxi was the right thing to try first.
As for children , do your research I’ve been lead to believe some women’s hormones start to drop after age of 30
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