I would love to hear feedback about starting Hydrea. I am anxious because i love to be in the outdoors. I have already had a lot of sun exposure in my life and it will be hard for me to avoid it now. I am also worried about the potential tiredness and nausea.
Any feedback would be great! Thank you
Hi FiestyJuan,
I have been on Hydrea for about 6 months now. I didn't tolerate the initial dose of 1000 per day (extreme fatigue and difficulties breathing). I feel much better since the dose was lowered to 500. However, you will see from the posts on this forum that everyone reacts differently.
I do cover myself with sunscreen when I come out of the house and also feel nervous about the sun exposure. We get a lot of sun here during the summer in France. 
I don't really get nausea, but per my specialist's advice, I take my pill after dinner, so it helps me sleep through the side effects (I feel rough if I get up at night), but OK during the day.
Hope you find what works for you.
All the best.
Hi there , I have been on 500mg of Hydrea for 7 years or so. I use sunscreen outdoors all year round. In relation to tiredness I am no worse than I was in the 10 or so years before I went on Hydrea and have no problems with nausea.Wishing you all the best.
Garry
Hi Juan, I have been on Hydrea (initially 1500mg per day). Now on 1000mg per day for 5 days and 500mg per day on Mon & Fri.I use some sunscreen (spray) when going out into severe sun (South African sun!!) but try to wear longsleeved shirt when possible. Also spending lots of time outdoors. Been on Hydrea 8 months - no side-effects whatsoever!!
Hein
Hi I've been on Hydrea for over two years now 1000 Mon - Fri 500 Saturday and Sunday .
No sickness whatsoever, do feel tired some afternoons, but that's probably down to the fact that I'm a terrible sleeper.
I wear factor 50 , long sleeves and long trousers and a big hat when out in the hot sun, which isn't often as I live in the North of England !
All the best with your treatment.
I have been on hydroxy for 14 years now. Whenever the sun is shining I put on 50 plus sun cream and so far I have had no problems. As far as nausea is concerned only take hydroxy an hour before eating or two hours after eating and this may help. Tiredness is a problem but I try to keep going and I have gradually got used to it.
Hi FiestyJuan
I have ET Jak 2 positive.
I’ve been on 500 mg Hydrea a day since Jan 22 and my MPN specialist asked that I take an extra 500 mg once a week. I take my pill with my dinner in order to mitigate the side effects.
I do have a lingering nausea all day and I can’t eat certain foods anymore (for example, just the thought of red meat makes me gag), but it doesn’t prevent me from doing anything. I just adjusted my diet accordingly.
Since Hydrea significantly lowered my platelets, my fatigue is gone and I have the energy I used to have three years ago, so I’m quite happy.
As for the sun, I haven’t had that problem yet as I live in Canada and winter… well, winter is Canadian LOL
All the best
Isabelle
Hi,
Everyone is nervous about starting. Howevere Hydrea is a med well tolerated by most. Most don't even know they are taking it.
Just use sunscreen. that's what I do and I'm on the golf course every day.
Good luck.
my experience going on hydroxyurea was that 1000 mg brought down my numbers quickly but the stomach upset was a bit much but smaller meals, a little medical Maryjane and weight stabilized. Antihistamines control the itching as well as fewer showers and lots of moisturizer has been getting me through
That drug has worked perfectly for me. Took a little time to get the dosage right but all good now. Currently 1000mg 3 days a week, 500 the other 4. Numbers all in a good range.
Regarding the outdoors - I've spent the last 35 years outdoors thanks to early retirement and I haven't changed my activities that much. Kayaking, swimming, and hiking so a lot of sun exposure. My skin is definitely more sensitive to the sun now but that's easily solved with sunscreen, a hat and a lightweight long sleeved shirt.
Everyone does react differently but I have to underline the need for hydration. I thought I was drinking enough water but I wasn't. So consider increasing your water intake once you start the drug. I do get tired by 3 in the afternoon but I usually start my day at 6am and I am 76. Fatigue is both a product of the disease and the drug, but I do believe it can be managed for most of us. Unfortunately I know from posts on the forum that some do have much more serious fatigue and may have to look for alternative therapies. If you drink much alcohol, consider reducing it. (I still miss my evening glass of whiskey but it's a small price to pay for feeling good - only my opinion)
I think this drug is a good place to start. Good luck moving forward.
Thank you to everyone that took the time to respond to my post! I have always been the kind of guy that gets through things on my own but this experience has shook me. All I wanted was to talk to someone who has been through it and thankfully I found this forum which has given me real feedback.
Hello and welcome.
Hydroxyurea is one of the first-line or preferred options for treating PV. The interferons (Besremi/Pegasys) are also preferred options to treat PV. Jakafi is another choice, but some insurance companies require your to fail on hydroxyurea first. Depending on your risk factors, another option is for phlebotomy-only. The best thing to do is to review ALL of your treatment options with a MPN Specialist before you make a decision. Note that MPNs are rare disorders and most hematologists do not have much experience with them. Here are two lists just in case you have not seen them.
pvreporter.com/mpn-speciali...
It is also important to do your own research and understand each of your treatment options. MPN Voice is an excellent place to start. mpnvoice.org.uk/ What you will find is that one of the most important things in treating PV is to control erythrocytosis. This is usually measured by targeting HCT < 45% for males. Any of the different treatment options can work to reach this goal. Each works in different ways, has different contradictions, and different risks/adverse effects. Everyone reacts differently to each of the treatment options.
Besremi is a pegylated interferon that is FDA approved for PV. Pegasys is a pegylated interferon that is used off-label for PV. The interferons are an immune modulating treatment. The interferons are potentially disease modifying in that they may reduce JAK2 allele burden and reduce risk of progression.
Jakafi is a JAK-inhibitor that works directly on the JAK-STAT pathway that is upregulated by the JAK2 mutation. Jakafi is FDA approved for PV. Jakafi is known for good symptom control for issues like pruritis and splenomegaly. Recent evidence indicates that Jakafi has the potential to reduce JAK2 allele burden.
Hydroxyurea is a form of chemotherapy (cytotoxin) that is used off-label but is in common use for PV. Hydroxyurea works by altering DNA activity in hematopoietic stem calls and other cells in your body. Hydroxyurea is a fast acting cytoreductive medication. It does not reduce allele burden nor impact risk of progression.
Phlebotomy-only is a treatment option. It works by inducing iron-deficiency. Less iron means decreased production of RBCs. It does not reduce allele burden nor impact risk of progression.
It will be important to learn more about all of your treatment options. We all react differently, both in terms of efficacy and tolerance. Some tolerate and benefit from hydroxyurea. Others do not. I am one of the latter. I was refractory to and intolerant of hydroxyurea. I also experienced more adverse effects from the phlebotomy-induced iron deficiency than I did from the PV. I have done much better on Besremi. Note, however, that my reaction does not predict yours. We are all different.
Suggest that your review information about each of your choices then consult with a MPN specialist about all of your options. If you are clear about your treatment goals and risk tolerance you can make the best decision for yourself. Here is some information about hydroxyurea that you can review as a start.
drugs.com/monograph/hydroxy...
epocrates.com/online/drugs/...
oralchemoedsheets.com/sheet...
ethrombo.blogspot.com/2017/...
Wishing you all the best.
Hunter I just am so appreciative of how you break all of the information down and make it so clear. Thank you for all you do for us all!
Hunter, thank you so much for your thorough response! I am finding more information on this site than i did from the NPT that diagnosed me. She works under a Hematologist but I haven't spoken to him yet and I think of new questions everyday! I have decided to go to MD Anderson to speak to a specialist next week. I will report back after my trip.
Consulting with a MPN Specialist is an outstanding idea. Glad to hear you got an appointment. Suggest that you go with a written list of questions. It will help form your questions if you are clear about what you want your treatment goals to be and what your risk tolerance is. Preventing thrombosis is a given, but what about preventing progression and controlling other bothersome symptoms? What adverse effects are you willing to risk or manage in order to achieve your treatment goals? Which treatment options best aligns with your goals and risk tolerance.
This is the agenda format that I use for all medical appointments.
Treatment goals:
Define for your doctor what your priorities are. Can be very specific at times.
Treatment Approach
Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.
Updates/Issues/Questions
Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.
Treatment
Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.
Hi. I think we were all nervous at first. I’ve been on it over 10 years including doses of 1,000 at a time & never had any side effects. I try to remember to use sunscreen & wear SPF long sleeve shirt & visor if I’m going to be out in the sun for a long time. I also get skin checks twice a year. Good luck. Katie
Hi, It does make you feel very nervous going onto this drug and I remember looking at it on my kitchen bench for a few days before I plucked up courage to take it, I have no idea what I thought would happen but probably made worse by the fact I live on my own. Anyway been on hydroxy four years now, first couple of weeks felt a bit nauseous but did not put me off food. The only thing I did notice very quickly was increased hair loss, that is something I continue to fret about and think I have lost about a third of my hair. I have an outdoor life but have never been a sun worshiper (just as well in the north of England). I use factor 50 every day now including the winter and in the summer I tend to wear sport clothing with built in UV protection and although they are long legs and sleeves they are actually quite cooling. Hydroxy does not stop me doing any of my regular activities but because my platelet levels were increasing and hydroxy levels were having to be increased accordingly I decided I would like to try pegylated interferon. I am currently on a low dose of this while they gradually reduce my hydroxy so we will see how it goes. Just a point, a get my sun bloc on prescription from my GP as it is seen as a medical need (I had to ask) and because I use it all year around I get Vit D on prescription also. Hats are also important, I feel a prat in them so I tend to use a buff wrap just to provide some covering and not forgetting the eyes, sunglasses always...you can at least look cool in these! Good luck on your journey.
Thank you Janis! I have noticed there seems to be a lot of folks from England on the MPN Voice and Action forums. I live in Texas but am of English decent. Not sure if there is a link? Causation vs Correlation? Have a good day!
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