Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my profile, he recommends discontinuing hydroxyurea and going with phlebotomy only. I am having troublesome side effects and the new doc says risks (mutagenic) of HU in my case outweigh the benefits. Not currently suggesting a change to any other meds. Am reviewing with my primary hematologist. Am inclined to follow this recommendation. Anyone have experience with this approach to PV tx?
Discontinue Hydroxyurea: Had a visit with a new... - MPN Voice
Discontinue Hydroxyurea
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hunter5582
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I was on Hydrea for 15 years and have MF now at 74 with TP53 mutation. Not sure if hydrea caused this but it could have. I'd take his advice.
Thanks for the input. The TP53 mutation is something the MPN specialist specifically mentioned when we discussed mutagenic risk of hydroxyurea.
If I knew that 15 years ago I would have waited longer before taking hydrea. Angerlide is worse from everything I read.
I does seem a bit like a choice of "pick your poison." I am having some hope that perhaps I will be able to get by with just phlebotomy and no chemo. I am not going to do anything without careful consideration of all options. We will see what happens.
Phlebotomy is pretty safe I think. May the Lord bless you.
Hydroxyurea has side effects on me too...I am okay with 1 capsule in a day but the doctor suggested at least twice a day...oh boy! The side effects is really hard for me..she got mad when I don't follow the dosage.
There is nothing I can do with this kind of illness...very troublesome...
I have discontinued the HU and am now on a phlebotomy-only treatment regimen for PV. I could not tolerate the HU as it gave me toxic effects even at sub-therapeutic does. The MPN specialist I saw took me off it saying that for my form of PV, the risks of HU were not worth the benefits.
It is important to understand what HU is and what it does. Per the NIH-ToxNet HU "is a highly toxic medication with a low therapeutic index." While some people tolerate it with little or no problems, many experience toxic effects at therapeutic levels. HU works by interfering with DNA activity in your body, interfering with hemopoietic stem cells - slowing down the production of blood cells. Unfortunately, it interferes with DNA activity throughout your body. It can break allele strands and interfere with the DNA self-repair function in your body's cells. HU is teratogenic (birth defects), mutagenic and carcinogenic. There are other adverse effects as well, dyspnea, asthenia, depressed immune response, mucositis (mouth and skin ulcers), etc.
That all sounds pretty scary, but it is important to understand that all of the chemotherapies have risks. Each of them had their own risk/benefit profile. If your ET is symptomatic (thrombosis, splenomegaly, TIAs, etc) then you have to do something to reduce platelet levels. Having said that, at levels below 1 million - with no concerning symptoms - under age 60 - most docs opt for aspirin-only.
I believe you are in your 30s. I have no idea what your risk profile looks like, but I do wonder why you are on HU. I am not a doc and not qualified to say whether you do or do not need chemotherapy. But you can certainly ask questions about this. Here is one of the more up-to-date treatment protocols for ET. ncbi.nlm.nih.gov/pmc/articl... .
I hope that you have been given all the precautions for someone your age to take if you are taking HU. It is imperative that you do not become pregnant due to the risk of birth defects. As a woman, you must wait 6 months post-discontinuing to have a child (men must wait 1 year). HU passes into semen and vaginal secretions. Sexually active couples are advised to use a condom to protect the non-HU using partner. The partner should not handle the bottle of HU without gloves.
Do know that some people manage HU for many years without significant problems. It sounds like you are having some dose related issues that need to be addressed. Perhaps it is time for a second opinion from a doc with MPN expertise. I believe you are from the Philippines and do not know what the resource there are. Finding someone with real MPN expertise may be a challenge, but it is worth the effort.
All the best to you.
My feelings is really okay with hydroxyurea...but my platelets went high again...I only take aspirin and folic acid now. I am going to my doctor tomorrow for another for this decision I am really scared of having a stroke. Why this happening in my life.
I was diagnosed with PV back in October. My treatment so far has just been phlebotomy and low dose aspirin. At first I needed a phlebotomy every couple of days, but now the interval between the last two was 77 days. My doctor said he does not plan to prescribe hydroxyurea as long as the phlebotomy is effective in keeping my levels down. He wants my hemoglobin to stay under 15. Wishing you all the best!
Thanks for the response. I am wanting to come off of the hydroxyurea due to side effects and risks. Working with my doc on that ASAP.
What high to you? Your hemoglobin? Mine is platelets..phlebotomy what med is that for?
I have polycythemia with both thrombocytosis and erythrocytosis. The really critical number for me is HCT (related to HBG). I used to have ET, but it progressed into PV. The real risk for me is not the thrombocytosis. My platelets have fluctuated between the low 500s tp low 700s for over 30 years with no issues. Aspirin was all I every really needed. I have used HU on a few occasions when my platelet level got particularly high (into the high 900s), but I cannot tolerate the HU. The bigger risk is actually the HCT elevation. That more than the platelet levels is what causes thrombosis and other problems. At levels below 1 million, platelet levels per se do not change your risks per many MPN-experts. It is actually more complex than that, however. Some people are more prone to thrombosis due to how their MPN presents. For some of these folks, HU can reduce risks.
The reason the erythrocytosis (elevated red blood cells - reflected in HCT number) is dangerous is that it increases the risk of thrombotic events, increases blood pressure, and increases cardiovascular risks. Combined with thrombocytosis it is even more dangerous. Phlebotomy (aka venesection) is where they drain off a pint of your blood. It is just like donating blood. Repeated phlebotomy induces a state of iron deficiency that interferes with the production of red blood cells. However, it can cause your body to make more platelets as your body thinks it has just bled. It all becomes a balancing act - getting the number of phlebotomies right - reducing erythrocytosis without making you too anemic.
That is the short version of it. hope that helps
I will mention this to my doctor Phlebotomy. And I don't know if this is available in the Philippines is this a chemo drug or something?
Phlebotomy is also known as venesection. It is where they drain off about a pint of your blood. It reduces the number of hemopoietic stem cells in peripheral blood and also induces a reduction in iron levels. This reduces the production of red blood cells. Phlebotomy (venesection) is a central part of most PV treatment protocols. It does not reduce the number of platelets. It will sometimes increase them.
Since you are in your 30s, hydroxyurea is not a first choice if you need chemotherapy in addition to the phlebotomy. Most docs would prefer to use PEGinterferon or ruxolitinib if cytoreduction is needed for someone in their 30s. It sounds like you may have had some issues with HU in the past. Do be sure to explore other options if that is so.
I've been taken of Hydrea about two weeks ago, for exactly the reasons you are worried about (plus the side effect were terrible and I'm young so apparently infertility is a problem). But the choice was mine after speaking (nagging) to my Haem like three times. Now we try regular phlebotomies and ecotrin twice daily, at least until we can get hold of peg interferon. Like others have said, it's pretty much pick your poison. No meds = risk of clots and dangers associated with that, chemo = no risk of clots but makes you feel bad and risk further mutation and infertility. So far peg interferon seems the better choice - if your body can tolerate it well enough and it works for you.
This is actually my third time on hydroxyurea. The first time was when I was in my 30s (about 30 years ago). The second about 5 years ago. Both times went off when numbers got better. Never had any trouble tolerating before. Now side effects (constipation, flatulence, immune compromise-mouth sores, thrush) are getting steadily worse despite decreasing the dose. In addition to decreased sperm count, recent research indicates that HU can also cause a decrease in testosterone production and that this is not always reversible. That latter is not apparently widely known or accepted, but it is a big concern. I will be also be considering peg interferon or Jakafi if I really do need chemical cytoreduction.
Ok wow, even happier now that I hear about the testosterone because I am a natural bodybuilder and every bit of test is super precious to me!
Great news for me, I've been off of Hydroxy for a month and yesterday my Haem was able to get in touch with a supplier of Peg Interferon, he is working out a dosage and hopefully I can start with it within the next two weeks!
Hello Chris
I have JAK2 + ET. Diagnosed July 2017 and started on HU. Eighteen months ago I saw Dermatology since HU is associated with skin cancer - not Melanoma but Cutaneous Squamous Cell Carcinoma.
I have discussed Pegylated Interferon. Sadly in the US it's cost is around 4 thousand dollars per month.
I may ask about Methorexate. There is a fairly recent article that is probably easy to find. Evidently it helps with the underlying inflammation.
HU seems to have flattened my zest for seeing people and doing things around the house. Did you notice a change in your personality?
I will write after I discuss this with my Hematologist - Dr. Borate, Chief, MPN Division, Oregon Health and Sciences University.
Patty
Not sure what insurance you have, but I am surprised to hear PEGylated Interferon would cost that much out-of-pocket. Would think you would pay a percentage of that with your insurance until you reach your out-of-pocket cap. Assuming you have that sort of policy.
Asthenia (fatigue) is a common adverse effect associated with HU. HU can also cause mental/mood changes (such as confusion, hallucinations)
rxoutreach.org/monograph/hy...
drugs.com/monograph/hydroxy...
Note that methotrexate can also cause fatigue/malaise. ALL of these meds have their own risk/benefit profile. Ruxolitinib and PEGylated Interferon can be more effective and better tolerated, but not always. There is no advance test to know what will work. It is all just trial and error.
The other options not already on this list are anagrelide and busulfan. Like methotrexate, these would be third-tier options. For myself, I would Absolutely prefer to try PEGylated Interferon and/or ruxolitinib to the other options. I am very pleased to see that Besremi may soon have FDA approval. To me it would be worth the money. I will find a way to afford it when I need to go back on meds.
Don't know if you have ever seen this, but it is a great presentation on ET by Dr. Jerry Spivak (my former MPN consultant), who is one of the leading MPN-experts in the USA. It is very informative.
youtube.com/watch?v=hbVr9u3...
All the best to you.
Hi Chris , wondering if you could tell me what problems you experienced on Hydroxy? Ive been on it for two months now without any major issues. Just want to know what to look out for.
Sure! My issues was heavy headaches, nausea and bad fatigue. Now that I stopped it and waiting for new medication the only thing I experience is a little fatigue but I dont need naps like I used to on Hydroxy. But that wasn't the only reason I asked to change medication. I was bothered with the testosterone and infertility problems it causes, as well as the increased risk of other leukemia that comes with taking it for long periods (as I am only 36 now)
Thanks Chris, i will have to look into the testosterone issue. I need every bit i have!
Decreased sperm counts has been recognized for a long time. Decreased testosterone is fairly new in the research from what I could tell. At this point animal studies are showing testicular atrophy (decrease testes size/weight), diminished testosterone. There are some human case studies, one of which showed this was sometimes not reversible (scary thought!). If you want to look, search terms are testicular atrophy, hypogonadism, decreased testosterone and hydroxyurea (and all its derivative names). None of the side effects info lists this yet - hopefully more definitive information will become available.
Yeah me too...hemoglobin and red blood cells now is low...I am afraid of that..
HU decreases all hematopoiesis - platelets-red and white blood cells. The doc needs to balance your dosing to not make your white and red blood cell levels too low. .
Well, I went off Hu about two weeks ago. A friend who is a doctor gave me a book on the connection between the mind and the body, called "The Power of Suggestion with Hypnosis" by Dr. E. Arthur Winkler. This book solidified and verified my understanding of human consciousness and its power. It seems likely that my own ET is a result of my perception of the world as not working properly. Platelets can be conceptualized as shields, so when threat levels (even metaphorical) are high, it makes sense (to a human body, which has limited ability to interpret the thoughts that its consciousness holds) to make more platelets.
In my case, it is the production of platelet factory cells ("megakaryocytes") that my body increased. The medical establishment cannot distinguish between "abnormal" and "unhealthy," and in my case, I believe my abnormally high platelet count is not unhealthy. Dr. Tefferi of the Mayo clinic recommended (I don't have time to look up the reference) NOT treating ET with Hu unless there are symptoms. My health insurance company (Kaiser) has not yet assimilated this kind of thinking, so I and my friend Dr. Blanscet agreed to go ahead with my personal plan to stop taking Hu. I am now working on teaching my body that the threat for which it is preparing by making extra platelet factories is not the kind of threat that extra platelets will help mitigate. At the same time, I've stopped calling it "too many platelets," and started calling is "abnormally high platelets." The rephrasing warms my spirit because my body has furnished me with extra protection, and my consciousness is now on the same page with it.
I remember reading something in high school (late 80s) about cancer patients envisioning cancer therapies working as designed and other patients not bothering to do that mental work. The experiment suggested that the mental work improved the efficacy of the therapy. This memory has been sitting in my mind for about 30 years. It explains why I tend to be radically optimistic about things, if you really think about it for a while. I read that article in Time or Newsweek for the Orange County Academic Decathlon all those years ago.
The mind-body connection is indeed powerful and can do both good or ill. Hope your approach works. Really like your notion about abnormal vs unhealthy platelet numbers. My understanding of current research is that there is no direct correlation between platelet numbers and risk of thrombosis. Apparently leukocytosis is a higher risk factor than thrombocytosis. I hope your docs at Kaiser get caught up to the current thinking. Not sure corporate Kaiser will ever get there, but perhaps individual docs will.
I just wanted you to know, that you gave me hope and a big mind uplifting. I also try to find out these body & mind connections (my therapist says it is another attempt of me to control my situation- and she definetely has a point!), but i trully believe that body and mind harmony have only good to offer in any situation. So... i saved your answer in my tablet as a screenshot,so i can return from time to time! I want also to tell you,that our spleen ,according to chinese medicine/philoshophy, represents our worries. In my case thadt seems correct! I have spleenomegaly and Generilized Anxiety Disorder the last decade! Thank you again for the uplifting comment 
Glad to hear that affirmation was helpful. I do really believe that the mind-body connection is quite powerful. It cuts both ways and can either help us or hurt us depending on how we handle it. I have experienced both the positive and the negative effects of this connection. Trying to take control of the connection, to the extent that we can, seems to me like a healthy rational thing to do. There are no miracles to come out of a positive approach to managing this, but it sure can help us heal and manage what we face. I have a new challenge to encounter. On top of the PV, I have been diagnosed with a brain tumor in the occipital lobe. Likely a lower grade tumor, but large enough that it is threatening my vision. It will require surgical intervention (scary)!! I am restarting practice of Tai Chi to help to help manage the stress and marshal the healing energy that comes from this practice. My hope is that by blending traditional Western medicine with some alternative healing practices I will overcome this newest challenge. Your post about the mind-body connection reminded me of just how important this really is - so thanks - it helped me as well. All the best to you on your journey.
I am off the Hydrea and am on the Jakafi with no needs phlebotomists. My numbers have stayed down in low 40s with no true side effects except the norm of being tired. The phlebotomists also were causing anemia so that is a major reasons I had stopped those and when needed, I go in for hydration infusions, which help quite a bit.
Just another option...good luck to you..😊
Sheryl
Glad to hear you are having a positive experience with Jakafi. It is at the top of my list of other options.
My partner was having phlebotomy but he was becoming anemic and his platelet levels were rising. So our consultant but him on hydro. He is suffering really bad from fatigue now. It’s difficult to know what’s the best. 😢 he has PV only diagnosed about 11 months ago x
Could you please give your platelets, haematocrit and haemoglobin?
When everything got stirred back up back in April 2018 - PLT was 814, HCT was 58, and HGB was 18.8. Last Read a few days ago was PLT 462, HCT 40.1, HGB 12.8. RDW and RBC were also elevated in the past, but WNL now.
Quite high at the beginning and you dropped them with the Hydro! Let's hope that only phlebotomy will help you but I'm afraid that in time your counts will go up again. Currently I am also out of it waiting to do a phlebotomy.
Well hope springs eternal! I am willing to let the counts go up a bit, so long as I remain symptom free. There is a possibility of Acquire von Willebrand as part of the picture, just to make things more interesting. So - risk of thrombosis or risk of hemorrhage?? Only time will tell. If I do need meds, I will be looking at options other than HU.
When I was first diagnosed with polycythemia at age 31 in August 2017, I was pregnant, so we watched and waited + 1 baby aspirin a day. My numbers actually fell into normal ranges and my symptoms went away, thanks to the extra production of fluid.
But as soon as he was born, my numbers shot up and symptoms returned. I had headaches that lasted weeks, fuzziness to the edges of my vision, a slight lack of mental clarity, and a constant blush to my cheeks and hands. And the *itching.* UGH.
So my doctor decided to avoid the potentially mutagenic HU and skip to Pegasys. He said he doesn’t necessarily go straight to Pegasys for everyone, but I had a high symptom burden for someone who’s never had a proven blood clot. I started that in September 2018, and it’s done absolute wonders. I hate needles, but it’s been totally worth it just to make the itching stop.
I live in America, and it was like pulling teeth to get Cigna to cover it. Last year, with United Healthcare, they were incredibly helpful and approved it right away. Because my employer changed providers at the start of the year, and I wasn’t with them last year, Cigna couldn’t tell me the price based on my employer’s selected plan until after I was signed up (so you trap yourself first, greaaat). It’s $215/month just for the med. It was free with UH. And the prior authorization process through Cigna was equally messy, as they lost the forms we sent multiple times and spent a month solid giving us the run around. But my doctor’s PA is insistent, and we got it done. Still worth it though.
Best of luck! I hope you find what works for you! :3
Glad to hear you found something that works. If the new plan for phlebotomy only does not work out, then peg-interferon will be on the list to consider. I am fortunate in that my symptom burden is fairly low, though I may have developed Acquired von Willebrand. Time and more testing will tell that story.
I have had the exact recommendation from my haem. Professor. Off Hydro and just venesections and aspirin. I keep my fingers crossed. Let's exchange information since we have the same treatment!
I was just looking a this old post and saw your note. How is it going for you on phlebotomy only? The ongoing hematologist overshot the mark with me with the phlebotomies. Got me too low. I have been in erythropenia ever since May 2019. No phlebotomies in almost a year. I took iron pills for a few weeks, but did not like the side effects - would rather be anemic. My erythrocytes are gradually creeping back up to normal. Other than a bit of decreased energy levels, I have had no adverse effects. I will be seeing the MPN specialist at Johns Hopkins next week. Will see what he has to say.
Hope you are doing well in these crazy times.
Hi. I only had two phlebotomies and was alright. Now I need to have a new test as I didn't have any since January. With the lock down I forgot all about it. No problems apart from the itching. I will keep you posted.
Please do let me know how it goes. I will post a note once I talk to the MPN specialist next week. BTW - did you find anything that helps with the itching? I don't get the pruritis, but do get eczema. I am successfully preventing outbreaks and treating them when they do occur. Hope you have found something that helps as the itching drives you nuts.
Hi. I use all kinds of creams without success always. From Betnovate ( I also have a sort of eczema high on my back with outbreaks) and Elocon, to a baby cream for nappy rush with balsam and panthenol, and a good body lotion with urea that calms and relieves, from Lidl. They don't store it always. The worse is the dry itching. I plan on trying St. John's wort.
I get some of my worst eczema outbreaks on the back of my neck. I consulted a dermatologist and have been very successful in preventing the outbreaks and managing them when they do start up. I do believe that the eczema is related to the JAK2 related overproduction of inflammatory cytokines. SO part of how I approach it is through anti-inflammatory diet and supplements. Supplements = CurcuWin, SPM Active, L-Glutathione.
Can't really measure that internal interventions, but the topical interventions are really clear and very helpful.
Prevention = identify triggers and maintain healthy moisture barrier.
1. Triggers (for me) = overexposure to sun, perfumed/dyed laundry detergents/fabric softeners, scented soaps/shampoos.
2. I shifted to all perfume/scent free laundry detergents and softeners.
3. I only use scent free body cleansers. I prefer the CereVe hydrating cleansers since they also have ceramides. Can also use baby shampoo for hair if needed.
4. Use a ceramide-based cream (CeraVe brand - but there are others) on affected areas 2x/day to maintain healthy moisture barrier.
5. Treatment = When an outbreak does start up, I have a prescription for Eucrisa (which is a PDE4 inhibitor). Eucrisa does an amazing job. Better than anything else I have ever used. The dermatologist confirms it will work for pruritis too.
If you have not tried Eucrisa, it really does work better than anything else I have tried when prevention has not worked. Hope that helps.
Thank you! I will try anything!
I have used Bepanthol sensiderm eczema but it didn't work for me.
I tried some of the OTC eczema creams. None really helped with an outbreak. The Eucrisa works great though.
I am now about 2 months out from d/c HU. I was at every 3 weeks phlebotomy - but the doc moved my to every 4 weeks. The based on 5/9 labs - hold off on phlebotomy. CBC done on 5/21 still shows good numbers HCT=34.8, HGB=10.5 - all other erythrocytes likewise low or WNL. RDW-CV barely high at 15.3. All leukocytes WNL except BASO slightly high at 0.1/1.6%. Platelets are only 557. All-in-all - phlebotomy-only seems to be working for me at this point. I also had to d/c aspirin due to risk of brain bleed. Like PV wasn't enough - the docs found a rather large tumor in the occipital lobe. It has been hemorrhagic and is surrounded by edema. So my care is now a bit more complex. Will be doing a resection for the tumor in June. The PV affects the tumor, and tumor treatment affects the PV. I am currently seeing an entire hospital's worth of doctors! Do lets stay in touch re. the PV treatment. Not all docs are keen on chemo-cytoreduction for all patients. Interested to hear how others are doing with this approach.
Hi Hunter, just looking through your posts after your kind reply to mine. How did your procedure go? I hope you are doing okay!
I had the tumor resection on June 17. It was an open brain procedure (craniotomy) where they created a bone flap, exposed the brain and went in to get the tumor. I am fortunate in that they were able to go in underneath the brain to get to the tumor. They did not have to cut through the parenchyma to get at the tumor, which was periventricular near the right occipital horn. The presentation was a bit more complex in that the tumor wall was enmeshed with optic nerve fibers running along the wall of the ventricle. Therefor, they had to leave some of the tumor wall behind to protect the optic nerves. They still do not know what kind of tumor this is. Other than to say it did not look "aggressive" (e.g. is not a glioblastoma), the word is we will just have to wait for pathology to complete the assessment. Should find something out next week when I see the neurosurgeon. It is likely some form of lower grade malignant glioma. I suspect it is a grade 2 tumor based one everything we know, but time will tell. I have a coexisting genetic condition , Neurofibromatosis type 1 that predisposes me to certain types of CNS tumors. Pilocytic Astrocytoma and Pleomorphic Xanthoastrocytoma are two NF1-related tumor types on the list of possibles. One of the neurology teams thinks it looks more like a PXA than anything else, but that is just an educated guess. Hopefully it will end up being something that does not require follow up chemotherapy or radiation.
I am recovering well for an old guy who just had his head cut open and a tumor sucked out. They discharged me two days after the surgery and I went home with family to recover. The large skin flap that is stapled together hurts a bit, but I refused all opiates (detest them) and am fine with just Tylenol. There are some minor visual side effects, but they are expected to be temporary. I tire very easily, but seem to be gradually getting my energy levels back up. I am not pushing it, am abiding by the activity restrictions (though they chafe), and am just going to give myself time to heal and recover. One thing that has made a big difference is that prior to surgery I started practicing Qi Gong. I have a terrific Sifu (teacher) who started me out with some very gentle basics that are making a big difference. The 10 forms and the Six Healing Sounds are having both physical and mental/emotional benefits. The Qi Gong is promoting healing and the mindfulness that comes from it's practice is calming at a time that would otherwise be very stressful.
Thanks for asking about my recovery. The support we get from this forum is wonderful. We are all dealing with conditions that can be difficult, stressful and confusing at times. It is really a blessing to have a group pf people who understand what we are going through and can offer support, information and a shoulder to lean on. We are indeed stronger together. All the best to you.
Where can we find mpn?
I think your question got chopped off, so not sure what you are asking. Lots has been happening for me since the last post in this chain. Mostly good in that the recovery from the brain surgery has gone really well. The docs found a new tumor, this time a bone tumor on my mandible. I am going to get it taken care of, but not too worried about it after dealing with a brain tumor.
The treatment for the PV is doing fine, though my treatment protocol is rather different than most for age 64. Venesection-only - no drugs to control the blood cells. So far so good with this approach. The iron deficiency is preferable to the side effects of the drugs in my case.
All the best.
How does your doctor know you risk to take Hydroxiurea? How does he know the mutagenic condition in your case? What kind of test? What kind of diferent approach is it? Who is your new hematologist?. Very interested.
Thanks
The risks associated with hydroxyurea relate to how it works. HU is a cytostatic medication. It interferes with DNA activity. It inhibits the activity of hematopoietic stem cells, thus reducing hematopoiesis. That is its benefit. Unfortunately, HU also impacts DNA activity in other cells in your body. It can break allele strands and interferes with the DNA self-repair function. Thus, HU is a teratogen (can cause birth defects), a carcinogen, a mutagen (can cause additional mutations), and potentially is leukemogenic. There is no specific test for this. It is an intrinsic risk for anyone who takes it.
The National Institute of Health ToxNet noted HU to be "a highly toxic medication with a low therapeutic index." The site also noted that despite this, it is an appropriate choice for some people. With all medications, you have to evaluate the benefits vs the risks. Inadequately treated MPNs are also VERY risky. You can't know in advance how you will respond to HU or any other medication. You only find out by trying. I responded OK the first 2 times (1 year periods) I used HU, but the third time found I am now HU-intolerant. Others have a far more positive experience than I did with HU. We are all different in how our MPN presents and in how we respond to treatment.
My old MPN Specialist was Dr. Jerry Spivak, who is one of the leading experts in MPN treatment. The new doc is Dr. Evan Braunstein. Both based out of the MPN Clinic at Johns Hopkins Hospital. Dr. Spivak (now retired from clinical practice) is who was very clear that I should not be taking HU. He also recommended I discontinue aspirin as at my age (then 63) my risk for bleeding was greater than my risk for clotting on aspirin (which was true in my case). I am on a phlebotomy-only treatment plan. So far, it seems to be working well for me; however, that would not be the right plan for everyone. It will also not be the right plan for me forever. This is why individualized care by a MPN-expert treatment team is so important. We are each different. Our needs change over time. There is no one-size-fits-all treatment plans.
Since you are looking to learn more, here are a few resources
Hydroxyurea
drugs.com/monograph/hydroxy...
Presentation by Dr. Spivak (about ET - but good info on MPNs in general)
youtube.com/watch?v=hbVr9u3...
I hope that helps.
Thanks you very much. It helps me. Then, I I think I have to look for another drug. I am only on phlebotomies and it works perfectly until now. I don't know why my hema wants to change to a citorreduction, only for my age, 62. No before thrombosis that I know, calmed external symtons (only legs, what I know because my doctor says nothing related to PV. Although I have serious doubsts). My hematocrit is now 49, my platelets between 550 to 580 in three years. I think it is no too much but I am not a doctor. I don't take aspirin due to Dr Spivack recommend me stopping it. I love this doctor. He is the expert who talks clearest. I undertand his explanation.
I am interested in what kind of test I have to do to know what kind of drug or treatmaint will work for me properly. My body dosen't like any chemical thing. I am intolerant a lot of things, unfortunately. I think I developed it with this disease.
Thanks for helpingg me. I appreciate it.
The age-related issue is that most protocols call for us to be considered high-risk at age 60, though some have moved this to age 65. This protocol may or may not apply to any specific person. Your hematocrit does need to stay below 45% when you have PV. That is very clear in all of the research. Dr. Spivak was also very clear about this. It is the one blood cell number that really does matter. It is a more important predictor of thrombosis than platelet levels. Dr. Spivak does not favor "sanitizing" blood cell numbers just to make labs look better. I would be more concerned about the HCT than platelet levels 550-580.
One thing to note is that I experienced excessive bleeding and bruising while on aspirin. Apparently Dr. Spivak has seen this and is in agreement with the American Heart Association regarding aspirin risk for bleeding as we age. This is NOT the norm for what most docs recommend. It is, however, the right choice for me. I would not presume to say what is right for someone else regarding aspirin.
I would encourage you to learn more about PEGylated Interferon and Ruxolitinib as options so if you do need medication for the MPN, you will know what your options are.
All the best to you.
Thanks. I will read more about these drugs. Then, I think I can wait until 65, maybe if my body agrees with this.
I hope so, but do pay attention to HCT less than 45%. Hope you get it all sorted out in a way you are comfortable with.
I am going on 15 years with phlebotomy only. I see one of the top experts in the world at MD Anderson and he wants me off drugs for as long as possible since I was diagnosed in my 40's. They will be needed at some point but I am lucky and manage without them for now. Phlebotomies are now infrequent as my iron stores are so low which is where they've been trying to get me. Symptoms aren't to be recommended , they wax and wane, but he feels the HU will be a different set of symptoms, not a better set. This is a treatment only for some, all decisions with this disease are based on your own body and experience but it is a valid way to go.
Absolutely true that we are all different. Our bodies do not respond the same. General treatment protocols are just that. They are general protocols that may or may not apply to a specific person. It sounds like you have been getting individualized treatment in a fashion that makes sense for you. Hope you can continue on this path for as long as possible. I am now age 65 and still phlebotomy only. HCT is well controlled with phlebotomy. Will go back on meds when needed, but not until then.
All the best to you
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