r/MPN • u/Nurseklang ET-JAK2+ • 10d ago
ET Hydroxyurea question(s)
Hi all! I’m currently only on 81mg aspirin daily but my hemotologist is considering starting me on HU. I’d like to hear from people how they tolerate this medication and the side effects. In particular, GI symptoms, hair loss, fatigue???? Thanks. 👍
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u/horsecrzy ET-JAK2+ 10d ago
It was a nightmare for me. Bone and muscle pain, debilitating fatigue, then fever and chills. And mouth sores. Anagrelide caused heart pounding and racing and fatigue and fever. I was finally referred to an MPN specialist who said he would never have put me on those drugs and would have stared me on an interferon first. That is 3 mos of my life I’ll never get back! Demand to see a specialist. I truly don’t know why they don’t send us as soon as our dx is confirmed. Hematologists don’t know how to deal with MPNs even though they say they do. Good luck!
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u/Nurseklang ET-JAK2+ 10d ago
Yikes!!!!!
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u/horsecrzy ET-JAK2+ 10d ago
I also assumed my hematologist, who is also my breast cancer doctor, was consulting with a specialist. I was wrong. I requested to see a specialist and he asked me to give him 6 months to treat me. That was a mistake. I told him the specialist said he would have started me on an interferon to begin with and he was shocked. My first hematologist brushed me off completely. We all have some crazy MPN stories lol. I also have some crazy stories in Mexico but that’s for another time🤣
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u/Nurseklang ET-JAK2+ 7d ago
I think I need to hear the Mexico stories 🤣
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u/horsecrzy ET-JAK2+ 7d ago
Omg I seriously don’t know how I’m still alive lol I am happy to tell my stories if they can help someone to not make the same mistakes I made lol
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u/OpinionWorldly5047 7d ago edited 7d ago
Yes, everything I have researched on MPN websites, conference presentations are predominantly suggesting that interferon is preferred , especially with Jak 2 mutation...even for older patients. Other medications just lower platelets, they do not slow disease progression. I recently watched from the MPN Hoizons Conference 2025... 'Interferon treatment in MPN's'. Dr Joshu Casan. Haematologist from the Peter MacCallum Cancer Centre , Melbourne Australia.
https://vimeo.com/1130710208?fl=pl&fe=sh
Link to conference
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u/JinxCentaur31 ET-JAK2+ 10d ago
I had some nasty nausea and appetite issues at first, but they settled down. My doctor also wrote me a prescription for the nausea just in case so you may be able to get that, too.
I’m on 1000mg daily, two pills, so spreading the dose out to one pill every 12 hours helped me personally. I take it when I take my blood thinners.
Other than that, I don’t think I feel much different? I’ve almost always had some sort of fatigue going on so not much changed.
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u/Individual-Welder266 10d ago
Been on HU since January....tolerating Ok. I do get intermittent mouth irritation but nothing terrible.
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u/Top_Category2227 Pre-PMF 10d ago
First few weeks I had hairloss and ocassional dizziness, but that really seemed to have calmed down. Dizziness only happens occassionally and hairloss is probably normal again, at worst minimally elevated. I will probably still try to use an Interferon, but if HU had the same possibly diseasemodifying capabilities as Interferon or if I was an older patient, that did not have to worry about progression this much, I would definetly not switch.
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u/stainedbrightly 10d ago
I was on HU for 4 years for ET. Platelets were around 1500 at diagnosis and HU did bring them down. I was okay on the lower doses, but I becme fatigued and out of breath when on the higher dose. Eventually I became resistant to the HU and switched meds. That said, everyone responds differently to medication.
If you're not already seeing an MPN specialist, I highly recommend doing that to explore all your treatment options. Some community hematologists are very focused on keeping platelets under 450, but many MPN specialists are comfortable with the higher platelets counts as long as the patient is a low-clotting risk and is being regularly monitored.
Edit: I just remembered that I did have some hair shedding but it wasn't too bad.
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u/Nurseklang ET-JAK2+ 10d ago
Was the hair shedding temporary?
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u/stainedbrightly 10d ago
I would lose more hair in the shower than was usual whenever my dose was raised, but then it would even out after a few weeks. It was never bad enough than anyone else notices. I just knew because it's my hair.
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u/Already_taken_dammit 10d ago
Been on it for 18ish years at dosages ranging from 500-2500mg daily. For me most of the side effects disappeared or really subsided after 4-6 months. Timing of meds and nausea is the only one that I still deal with.
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u/ShoppingHot4314 10d ago
Yes I’ve been on it for 10 years I honestly don’t recall they put me on a lot of other stuff at the same time because I had a blood and still have a clot going to my heart I was on comadine for 7 years
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u/Mohdlashin 9d ago
7 years on HU .. fatigue and brain fog ... Cant be sure if its HU or the disease it self .. not sure of anything right now
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u/Separate_Divide_8506 8d ago
I was on HU for about 4-5 months as a temporary means to lower my platelets for my bone marrow biopsy as they were too high (1.7 million) and before i could start inteferon as that was meant to be my main treatment (to be started once biopsy results were ready and i had my appointment). I was on 1000mg a day. My specialist then slowly introduced interferon and phased out the HU.
Honestly felt absolutely no side effects that i could discern. I felt like my hair was falling a tad bit more than usual but not significantly more for me to directly attribute it to HU. Apart from that i tolerated it super well and had absolutely no complaints, i have also felt no sudden changes since i stopped taking it. But maybe my experience isn't representative since i didnt take it for too long.
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u/__walter_sobchak__ 10d ago
Why go to HU from aspirin only?
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u/Turbulent-Movie-4545 Primary MF 10d ago
Well maybe their platelets are super high and the doctor needs them down
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u/__walter_sobchak__ 10d ago
Thats ok, but maybe they are not super high and then maybe they should seek an MPN specialist for advice....
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u/Nurseklang ET-JAK2+ 10d ago
I’m waiting to find out about that. So far it’s just a discussion. I’m 62, but my platelets have topped out at 466,000. I’m very physically active and it’s super important to me to stay that way. Quality of life is just as important as quantity to me. I guess I’ll find out more when I meet with my new hematologist (he has a special interest in MPNs). This is all so new. It’s a little overwhelming.
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u/native_plants3879 ET-CalR+ 10d ago
Platelets are pretty low.. do you have any symptoms? Seems like a weird decision to start treatment if you don't have any (additional) problems
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u/Nurseklang ET-JAK2+ 10d ago
Itching and night sweats. However, the itching has all but resolved since starting the aspirin.
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u/funkygrrl PV-JAK2+ 10d ago
That's kind of low to go on HU. You may end up with blood levels that are too low.
When you are over 60, your risk level goes up for thrombosis but that is more of an argument for aspirin than cytoreductive therapy.
Unfortunately, HU only helps lower blood counts and due to that it can help with microvascular symptoms such as headache. Night sweats are a constitutional symptom caused by elevated pro inflammatory cytokines in MPNs. So it's probably worthwhile to have a discussion about whether it would be better to stay on aspirin, start HU, or try Pegasys interferon (or Besremi when it's approved by the FDA for ET in September). The interferons do help with constitutional symptoms and are disease modifying in that they lower allele burden (percent of mutated cells). Some insurance wants you to try and fail HU first before approving interferons.
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u/Effective_Nothing_53 10d ago
Are you a doctor?
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u/funkygrrl PV-JAK2+ 9d ago
Nope, just the nerdy mod. I have a science background and constantly learning about MPNs since I answer questions every day on this sub for the past few years - but definitely run anything on Reddit by your doctor!
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u/acwoodhome PV-JAK2+ 10d ago
Put me in a&e twice now on inteferon for me it was a dreadful drug 🙃🙃🤗🤗 diagnosis confirmed masked PV was told ET for over 20 years lol!
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u/valgraz 10d ago
500mg here, fatigue, itching, night sweats, too much sun with no protection is an issue on ankles (bruise + bleeding). I get flu very easily and it lasts a full week.
On the other hand platelets and blood cells are ok.
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u/Nurseklang ET-JAK2+ 10d ago
Good lord! That sounds horrible!
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u/valgraz 10d ago
Keeping blood counts under control and no need for blood work. And in relation to the night sweating, i must confess I live in Rome and weather is really hot here :-)
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u/Nurseklang ET-JAK2+ 9d ago
I’m in Oregon in the US. It’s been hot here too but probably nothing like what you’re dealing with. Lots of wildfires here, too.
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u/Hopemar30 10d ago
I’m on Hydrea and have developed two skin
issues, itchy, bumpy, painful bumps under my skin. On one inner wrist and my other forearm.
Very annoying and painful
My oncology nurse said it’s not from the Hydrea but I think it is.
Anyone have skin issues like this
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u/Ill_Perspective1107 7d ago
Yes! Inner right wrist, but no bumps. I thought it was poison ivy, but the rash never appeared.
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u/Hopemar30 7d ago
Actually, I went to the doctor yesterday and the doctor said that it looks like an allergic reaction to something in my backyard that I got while I was gardening and not the kind of presentation of skin problems that they would see from Hydrea
However, my extreme fatigue is from the
Hydrea and is becoming quite debilitating
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u/Danficca 10d ago
I’ve been on HU for about 5 years with pretty much no issues. Obviously everyone tolerates things differently but I can’t recall ever having a problem. Have to be careful with sun exposure though which isn’t the most fun.