There may be a post about this, but I could not find. I’m just beginning HU, 500 mg 1 a day.
I have ET JAK2 +.
Until this point I’ve been on aspirin only. Platelets continue to rise, so MPN specialist suggests I begin HU. I’m hopeful this protocol will help reduce amount of headaches and fatigue I experience. Has anyone noticed a difference once they began HU?
Thank you for response. This group is so encouraging to be part of.
do hope Hydroxy helps you.
I used to get a sort of clamped sensation or floating . That has gone since taking 500mg every other day for just under a day .
It is good to have people w ho really understand to chat to .such a comfort
thank you for responding. I get floaty feeling too. But dizzy, but not really dizzy. Hard to explain for someone who doesn’t have this condition. Did you have any negative side effects from taking HU?
No side effects apart from a few months ago when strange line of little bruises appeared on my arm a couple of times for no reason.Took me along time to decide to take hydroxicarbamide . Hospital wanted me to take daily . I chose to try every other day with good results.
I drink lots of water with the tablet and mainly follow anti inflammatory diet .
Hi, I was just diagnosed with ET JAK-2 in September and started Hydroxyurea 500 mg /day. It has taken 8 weeks for my platelets and Hct to come into the normal range. Once they did, my symptoms resolved (“spacey feeling”, lightheaded, AM headaches, and tingling in my fingers). No side effects from the Hydroxyurea. I feel great and am so happy my numbers have normalized. My doctor placed a standing order for CBC every two weeks and since I can access my results immediately through My Chart it has been reassuring to see the numbers gradually come down as my symptoms slowly resolved. Good luck!
70yo, ET JAK-2 since Sept 22, Hydroxyurea /Baby ASA
I’m pleased for you that you are making good progress. I am curious about your My Chart comment as my blood results seem to take 2-3 weeks to appear. I’ve often had another blood test by the time my results are visible. I often resort to one of the nurses send me my results as a message. You seem to be having a much better experience with it
Best wishes, Jan
I am same . Exeter Hospital usually 3 weeks to post results on My Chart. I asked Dr at hospital why delay & told consultant likes to double check all results before posting on it. Although they will tell you platelets count my others were delayed including Liver readings which had started to rise outside normal range after 4 weeks on Interferon . Julia 👍
hi Julia. My treatment is based at North Devon District Hospital so we come under the same consultant team. When I mentioned my concerns about rising blasts he did say that that was a “problem with us having access to our results!” Erm! No! Actually it’s a problem that my blast levels are rising !!!
Good luck with your liver results.
Best wishes, Jan
Yes Jan I think we are on a go slow in Devon . They are short of staff but I always go for face to face visits to at least speak to them . Yes definitely the interferon doing the liver. Never even had a small glass of red since starting any of these drugs & eaten really sensibly. My blood tests in past always within normal on liver. I will be glad to get this treatment balanced as it’s rollercoaster. But Professor Harrison at Guys has been really helpful . Julia 👍
Hi Beetle [Jan],
That's the way!
It's just too bad that you had to redirect him to focus him on your treatment and outcome rather his problem[s] with the EHR.
Best,
PA
Hi Beetle,
My Chart is the patient portal used by the Epic software that many hospitals use. The software has integrated modules, such as Lab, nursing, radiology, admissions, etc. Lab results are completed in the lab module and released when they get to a FINAL status in the lab module. Healthcare providers see the results immediately when they reach FINAL status. However there are settings that determine when a patient can see a result. Different facilities may set this such that a provider must review settings before the patient can see them . I think these settings can be set globally, or at the test level., but depending on how the system is set up, it may be possible for provider to override. Each facility determines the default global and test level settings.
At any rate, I go to a large teaching hospital (UW in Seattle), and results for everything (lab, radiology, physician notes) are available to both physician and patient immediately. I get an email notification that my results are available. If I go to the main hospital lab for a blood draw, I see the results within two hours. If I go to an satellite lab that has to courier the sample to the main hospital lab for processing, it may take 12-18 hours.
For me, being able to determine when and where I have my blood drawn, and then see the results immediately gives me a sense of control (maybe false!) over this disease, and thereby relieves some anxiety.
I do not know if you can ask your provider if there is a software setting they can modify to make the results available to you sooner. Certainly the results are in the system, and making the patient wait weeks to see a CBC result seems cruel to me. Healthcare providers should be partners with their patients. Unnecessary wait time for results increases anxiety.
P.S My career was a Clinical Informatics Nurse so I am very knowledgeable about medical software, including Epic.
thank you for that response. My hospital has just started using Epic too and as Julia above mentioned it appears our doctors wish to review results before we get to see them! As you say though unnecessary wait time increases anxiety especially for me at the moment as I am monitoring rising blast levels. I go for transfusions to a small hospital unit and the nurses know us all very well as people too. They are usually willing to give me access to my results ASAP but the delay on Epic seems unreasonable to me. They are after all information about my body so I feel they should not be withheld.
Interesting details on the MyChart, which I have also. I get CBCs in less than 10 minutes after the draw. My specialist has the machine in the office and he gives my preliminary result on paper. A sort of "hardware" setting (paper)
We then can discuss my next Besremi dose right there for my injection the next day. It is neat. The CMP comes at 9PM every time after the visit.
This thread shows MyChart is not automatically the same for all, the inner workings matter.
Hi Minify [and Beetle],
My local health systems also use either MyCare or MyChart; and Roswell Park Cancer Ctr, where my MPN specialist is. uses MyPortal- and in all of those cases, the results have always come back PDQ [pretty dern quick].
In fact, when they drew my CBC prior to my last phlebotomy appointment [which they had requested in response to my Hct rebounding to 49, I had the new result before they could even poke me, and since it had decreased to 45, I declined the poke.
Best,
PA
My results are ready for the doctor in about an hour and are posted in my patient portal (Lifespan)
I go to a local hemotologist and a specialist at Dana Farber in Boston. Very pleased with the "team"
Thank you for this positive response. This is hopeful. I am starting HU tomorrow... it has taken me quite sometime to get the courage to take HU. I am very active ( although with fatigue, this has been more challenging) however, my plan is to stay very active and as healthy as possible. I love the Sun, I do wear sunscreen, but I have read how people on HU can no longer wear shorts or short sleeve shirts. That would be very hard in 100 degree weather. I will do my best and not stress about the side effects, as I still do not know how I will fare on this drug. Your response was encouraging, thank you.
Very bad allergic reaction to sun this summer. I have to be more careful. On HU seven years
I get headaches daily, and brain fog...
Unfortunately, I don’t feel any better since starting Hydroxycarbamide nearly a year ago. Still lots of fatigue, brain fog, tingling fingers and tinnitus. This is what my MPN specialist had told me though, that I probably would feel the same as before! Rather disappointing as some people seem to benefit with less symptoms. At least my platelets and red blood cells are coming down ( I am JAK2 + with ET blurring with PV) which is important. Hope you respond well!
I had those symptoms all the time on HU. They went after I came off it & felt normal for 4 months on just aspirin. Now moved to peg interferon but that had side effects too on me. Trying a low doseage from January. Many of us especially female seem to be sensitive to the drugs unfortunately Julia 👍
Yes, my headaches (Cluster, migraine, whatever was waking me up several times nightly) went away with 500 mg of Hydroxy daily, along with my *really* red face and my acid reflux. Just being able to sleep through the night has made a big difference in my feeling tired. (It’s been a year since I was diagnosed with PV at age 66.)
I haven’t really had any side effects. I do find drinking enough water and not overdoing refined carbohydrates really helps me with fatigue.
My platelets went from 900 to 440, then back to 550. The hematologist wanted me to increase to 1,000 mg, to get to 450, and I really fought that, however, I do have more energy and I am less “foggy” with an increased dose of four more pills.
I kind of view all of this as being an ongoing science experiment, I can’t take it personally every time platelets go up, and I’m not magically “cured” if the platelets come down. It’s all just feedback to fine-tune treatment.
This group here has made all the difference in my attitude about my diagnosis, whatever I’ve struggled with since has been kindly and promptly responded to with encouragement and experience.
Gail
Thank you for responding. This is encouraging and a good reminder that this is more like an experiment. It seems that the more I read, there is so much more room for research and to find new treatments to support those of us with ET and PV. I am hopeful that when taking HU, I will find some relief from the headaches, foggy, dizzy, etc.. symptomology from ET. Thank you again, this group is vital to connect with, as it seems there are not a lot of us out there with this condition.
Hi Gail,
The difference in our HU responses is really ironic, because my GERD [reflux/heartburn] which had been previously well-controlled, flared badly with HU.
In addition, I began to have daily headaches, loss of balance, and worsening of my various peripheral neuropathies all the while I was taking it.
Unfortunately, at the same time, it didn't help any of my pre-existing PV symptoms one whit.
For me, besides my ever-present worry about skin cancer, HU's other toxic effects, and the lack of evidence that it prevents disease progression, getting off of it caused a huge improvement in my general physical state.
It took a couple of weeks, but all the symptom worsening I had experienced eventually went away completely.
Best,
PA
Hi PA,
I’m sorry that you’re having such a rough time with the HU. I had Stage 2 Melanoma last year, so the skin cancer concerns are there for me as well. I reached out to my oncology surgeon for guidance prior to taking HU, and he said the skin cancers caused by HU are manageable and not Melanoma. I see my dermatologist several times a year for biopsies and burning off random bumps. So far, so good.
I’m careful to take folic acid every day, and drink 64 oz of water. I also started using a CPAP machine this month, and I’m astonished what a difference the CPAP made in my fatigue and my depression just in the last couple of weeks.
I’ve recently bumped my HU dosage to 1000 mg every other day to lower my platelets, and it’s been okay. (Which is good, because until there’s a cap on drug costs, HU is about all I can afford : ) )
Hang in there!
Gail
Hi PV [Gail],
I'm glad you're coping well with HU, and while I do understand that the skin cancers associated with it are typically a non-melanoma type, it's no longer any issue for me because I stopped it in favor of Besremi.
Which, BTW so far has cost me even less than the token cost for HU- $0.00- d/t my pharmacy's intervention.
I stopped HU in part because of the side-effects it was causing., and in part because of my concern about disease progression. My PV was apparently accelerating by the time it was diagnosed after approx. a decade of indolence [slow increases in Hct and Hgb, but no increased cell counts], and my biggest concern is/was blocking that and reversing the process as much as possible- hence my choice of IFN-based therapy.
I am still in the process of dose titration, but it has only been a few months so far. Hunter is my role model in this process- especially given his recent revelation of significantly decreased JAK2 allele burden.
Thanks, and Best [regards, wishes etc.] always ,
PA
Hi EANgardengirl, i was prescribed a daily asprin for over a year following my initial diagnosis. My symtoms included headaches, pain, brain fog, severe fatigue, itch and lots more. These continued to worsen while I solely ltly on asprin. After alot of difficulty i managed to change to a new doctor and haemotology clinic. Consequently i have been attending an MPN specialist since August 21. She started me on hydroxyurea immediately. This made a significant difference to my quality of life.
I continue to experience my earlier symtoms , especially fatigue but in general its to a much lessor degree. In the meantime, i have also learned to manage my symtoms much better. An anti inflammatory diet, regular exercise (walking,yoga) & lots of water, ( even a low level of dehydration can bring on the headaches) are all musts for me.
My bloods still go up & down on occasions. However I have discovered stress of which unfortunately I have experienced alot of over the past 6 months, is a big trigger for everything!
My current prescription for is a daily asprin and hydroxy 500 ×5 days & 1000 × 2 days . Amounts vary depending on my platelet levels and monitored by my O.P. clinic every 2/3 months.
My quality of life and well being has improved significantly since i started taking hydroxy.
I take one day at a time and am happy and grateful for every good day . Take care ☘️
Hi EANGardenGirl,
I wasn't having headaches until I started HU, then I started getting them daily, I also started having a very strange issue with my balance, in that I didn't feel dizzy or vertiginous, but all of a sudden, I'd go off balance and lurch sideways, especially after getting out of bed or a recliner where I was relaxing. My previously suppressed GERD/heartburn also got bad despite omeprazole 2X daily.
I had had also been having a limited problem with a fungal infection between the toes on my right foot, which was being well-treated by an OTC anti-fungal cream, but within about 2 weeks of starting HU, it spread up my foot, and even taking an oral prescription of antifungal didn't help it.
The final straw was that once I started Ropeginterferon at the very lowest dose, my LFT and renal function tests, which had been slowly creeping upwards, went suddenly higher, so they had me stop the HU, and the abnormal results resolved.
I never had any relief from my symptoms of fatigue, brain fog, and terrible itching on HU, and only ever felt worse while taking it.
I'm now on the 3rd dosage increase of Ropeg, at 150 mcg every 2 weeks, and my Hct, which had been going up, finally dropped from 49 to 45, and hopefully at the next check will be on target.
I hope and pray that you do better on it than I did, but I also think that we should all at least consider being on an FN product, since that's the only proven way to prevent/delay disease progression/transformation.
Best,
PA
Hi PhysAssist
Thank you for your reply. I hope I tolerate HU as well. Some people have had very promising results , but it’s mixed. Can you please tell me what FN is? I’m interested in your opinion/ knowledge.
Oops, you caught me in a typo- unsurprising since I am not a typist.
I meant it to say IFN, meaning an interferon product- currently meaning either Pegasys [pegylated interferon- see * below] or Besremi [ropeginterferon alfa-2b see ** below].
*pegylated interferon alfa- A covalent conjugate of recombinant interferon alpha and polyethylene glycol (PEG), used as an antiviral and antineoplastic agent. The biological activity of this agent is derived from its interferon alpha protein moiety. Interferons alfa bind to specific cell-surface receptors, leading to the transcription and translation of genes whose protein products mediate anti-viral, anti-proliferative, anti-cancer, and immune-modulating effects. The PEG moiety lowers the clearance of interferon alpha, thereby extending the duration of its therapeutic effects, but may also reduce interferon-mediated stimulation of an immune response.
** ropeginterferon alfa-2B- A long-acting formulation of recombinant interferon alpha subtype 2b (IFN-a2b), in which IFN-a2b is coupled, via proline, to polyethylene glycol (PEG), with antiviral, immuno-modulating and anti-neoplastic activities. Upon administration of ropeginterferon alfa-2b, IFN-a2b targets and binds to specific IFN cell-surface receptors. This activates IFN-mediated signal transduction pathways and induces the transcription and translation of genes with IFN-specific response elements (ISREs). Their protein products mediate anti-viral, anti-proliferative, anti-cancer, and immune-modulating effects. The PEG moiety inhibits proteolytic breakdown and clearance of IFN-a2b, which prolongs its half-life, extends the duration of its therapeutic effects and allows less frequent dosing. The proline linker facilitates the synthesis of a single positional isomer which further increases its stability and half-life.
Basically, they are both forms of interferon: "a protein released by animal cells, usually in response to the entry of a virus, which has the property of inhibiting virus replication.", but in this case, they inhibit the abnormal JAK2 mutated stem cells preferentially over normal ones. See below for details.
This is why I think we should all at least have a trial of an IFN:
"Long-term outcomes of polycythemia vera patients treated with ropeginterferon Alfa-2b
Interferon alfa not only restores normal blood cell counts in patients with polycythemia vera (PV) but can diminish the mutant JAK2V617F allele burden..."
Source: nature.com/articles/s41375-...
There are a ton more conversations about IFN's benefit vs. side-effects profile here on MPNVoice mostly with studies/research findings cited and then explained- mostly by EPguy and Hunter, but by others as well.
Best,
PA
Thank you. It would seem that this type of treatment can potentially be more effective and less damaging ( to the body) than first line HU treatments? I am working with an MPN specialist, however he has not mentioned this type of treatment option. I am consideing going to the Mayo Clinic ( as I am in the US) for a second opinion before I begin any of the treatments suggested. Hard decisions, and at some point... must make one. My numbers continue to rise a bit, stay steady at 680-730... but just can't seem to put the HU pill in my mounth 
Hi again,
Exactly so- because if you read about HU, it's a nonspecific chemo-toxic agent, which interferes with DNA replication indiscriminately.
Mechanism of action of hydroxyurea
Abstract
"Hydroxyurea is well absorbed after oral administration, converted to a free radical nitroxide in vivo, and transported by diffusion into cells where it quenches the tyrosyl free radical at the active site of the M2 protein subunit of ribonucleotide reductase, inactivating the enzyme. The entire replitase complex, including ribonucleotide reductase, is inactivated and DNA synthesis is selectively inhibited, producing cell death in S phase and synchronization of the fraction of cells that survive. Repair of DNA damaged by chemicals or irradiation is also inhibited by hydroxyurea, offering potential synergy between hydroxyurea and radiation or alkylating agents. [Hence the increased risk of xkin cancer because of it.] Hydroxyurea renders cells sensitive to bleomycin because the quenched tyrosyl free radical no longer stabilizes the adjacent iron center, making it more susceptible to the chelating properties of bleomycin, which then produces active oxygen. Synergy has also been observed between hydroxyurea and a number of other chemotherapeutic agents, including cytarabine and etoposide."
Source: pubmed.ncbi.nlm.nih.gov/164...
See also: Hydroxyurea Toxicity
ncbi.nlm.nih.gov/books/NBK5....
That said, some patients seem t be doing well on it.
As for me, we didn't get on well together at all.
Best,
PA
excellent information, thank you for sharing your insights. Why is there not more reserach on stem cell therapy for ET? PV, etc? It seems that this MPN initiates from stem cell dysfuction, and to treat it at that level would be the strategic process.
Hi again EANgardengirl,
For me, the best thing about the IFN medications is that they directly address the abnormal [mutated] stem cell and make them die off.
The only other stem cell therapy that is really available is a stem cell transplant, otherwise known as a bone marrow transplant, and I don't think any of us wants to get to the place where we need to think about that [because it's only considered in advanced cases of MF where anemia can't be treated effectively without frequent transfusions.]
I do agree that it would be great if they could come up with some more patient-friendly way to remove and replace the mutated stem cells with normal ones, but currently they can only so that after killing off or seriously depleting/damaging the existing ones.
I think part of the reason that progress has been so slow with MPN's historically is because they're such a rare disease to have.- aren't we all so lucky to be this unique?
Sorry, my sarcasm switch got bumped there for a second...
Best,
PA
Oh, my EAN, I share your state of mind, and did get a video appt at the distant MAYO clinic to see if I could do anything besides HU for my ET (platelets over 900 now). It seems it is the first line of treatment, but I'm not sure why, except for perhaps insurance reasons, as HU is cheaper than other options. It is rough when you don't live near a teaching hospital where doctors see a greater range of people and study multiple approaches.
Thank you for sharing your experience. I believe it must be the insurance piece. I have also heard that HU is the front line treatment and it seems that until more reserach is done on our condition, there is not much choices we can have. I am hopeful for some type of Stem cell research/treatment breakthrough, as this is where this condition initiates from. Best to you and courage to us both on this journey
Hi Eangardengirl and Ovidess,
If this is redundant, I apologize, but while they're telling you that HU is the first-line medication for MPN's, they also seem to be forgetting to tell you that that IFNs [Besremi in particular] has also been FDA approved as a first-line treatment- for at least 1 MPN [PV], and since they're all just different flavors of the same disorder, there's no reason to think it/they wouldn't respond in kind.
Best,
PA
ET & HU
Pegasus, Hu and Iron 
Starting HU
HU & breathlessness 
Perm or Color while on HU
