Hydroxyurea dosage

[Jbone636]

I'm 32 with ET jak2 pos. My doctor recently left to work in a different area. I've been given a new doctor. The new doctor seems to be alot more aggressive. My old doctor had me on 1 pill (500mg) a day leaving my platelets around 590. The new doctor keeps upping my dosage. My first visit I was put on 2 pills a day, dropping my platelets to 530. She now has me on 2 pills a day for 3 days and 3 pills a day for the other 4 days. From my understanding she is going to keep upping my dose till my numbers are in range. My old doctor led me to believe that it was better to take less medication and be a little high on my platelet count. Im just curious if anyone else is prescribe this much. I don't like to question doctors but 18 pills a week just seems a little excessive to me. I would appreciate it if you guys could let me know if this is normal or not.

[Jlah]

Hi. I would try and get a second opinion. Is this your gp or your haematologist?

[Jbone636 in reply to Jlah]

Heamatologist

[mhos61]

I agree with Jlah about getting a second opinion, preferably with an MPN Specialist, especially because of your age.

I think your ‘second doctor’ is probably attempting to get your platelets down to a more acceptable range (adhering to guidelines) and hopefully, when that is attained the hydrea will then be reduced somewhat. The aim is to get your platelets at least below 450.

Are you in the UK/USA? I question why you are on hydrea in the first place at the age of 32. If you genuinely need cytoreductive therapy Pegasys would be more suitable.

Don’t be frightened to question your Specialist. They should expect to be questioned, especially when changes are being made to your treatment. Ask about his/her thoughts on Pegasys too.

Good Luck

[Jbone636 in reply to mhos61]

I'm in the U.S. I was on just asprin for the first year. My counts kept climbing. When I hit 1.2 mil, I think they said my von willebrand was low and that i was going to start having problems with bleeding. They never mentioned pegasys

[mhos61 in reply to Jbone636]

Most MPN Specialists would consider Pegasys first choice in cytoreduction therapy in someone so young.

[Val_P]

I think you should trust your doctor on this. When was diagnosed I was on 2 x500g a day. After a while I asked to be transferred from my local hospital and requested to be transferred to the care of a specialist in London. I am now under the care of Prof Harrison. My platelets are now well and truly stable within normal range. My Hydoxy was increased gradually to 4 x 500g mon-Thur. 3x500g Fri-Sun. No adverse side effects and very stable blood results

[Susana7]

Hi, as @mhos61 said, I strongly encourage you to ask about Pegasys interferon. I was put on it because I was 50, and you are much younger than that! It is not chemo and can lead to remission in some cases. I have been on it for over 5 years with excellent results. Started at one injection of 90mcg a week and over time reduced to one injection of 45mcg every 3 weeks. Best of luck xxx

[beckyluck]

Hi

I am 42, diagnosed with ET in May 2017 and have been on the same dose as you for the last 10 months, I was started on aspirin but my platelets went up to over 1300. Ive built up to my current dose over about a year as my platelets weren’t coming down as quickly as my consultant liked. On my current dose my platelet levels range from 250-350.

How long are you on each dose before your doctor changes it?

From what I have read over the last few years on this amazingly helpful forum is that everyone’s case is slightly different as it depends on various circumstances.

Take care & good luck

[hunter5582]

You have already heard from others about the use of hydroxyurea for someone in your age group. Here is a bit of the base information about HU and what the others are referring to.

drugs.com/monograph/hydroxy...

hillman.upmc.com/patients/c...

packageinserts.bms.com/pi/p...

HU is "a highly toxic medication with a low therapeutic index." (American Society ff Health System Pharmacists). It works by interfering with DNA activity and slowing the activity of hemopoietic stem cells. HU affects other cells in your body too, hence its toxicity. HU can break allele strands and interferes with DNA self-repair. It is a teratogen, a mutagen, a carcinogen, and with long-term use potentially leukemogenic. For males still of child-bearing years, it can cause oligospermia/azoospermia and this adverse effect is not always reversible. That is why men who may want to still have children are advised by the manufacturer (see attached) to consider sperm banking prior to initiating HU. If you do decide to have children, you must discontinue HU for one year prior to conceiving to prevent birth defects. If you are currently sexually active, it is advised to use a condom during sex to protect your partner from exposure to HU as it passes into semen. If you have a significant other in your household, she should wear gloves if she handles the bottle to avoid exposure as well. Hopefully you were already given all this information.

That all sounds rather daunting, so it is important to look at this in a balanced way. ALL of the meds used to treat MPNs have a risk/benefit profile. Even aspirin has risks. Not treating the ET also has risks. At age 32, the question really is do you need cytoreduction al all. In the absence of symptoms like thrombosis or hemorrhage, aspirin-only is a pretty standard protocol. I was diagnosed with ET in my 30's. I was on aspirin only for the better part of 30 years on an aspirin-only protocol. I have never had a single incident of thrombosis. However, that is me. We are each different in how our MPNs present. We each need an individualized approach to how to treat or specific case. Most hematologists do not have the KSAs to provide optimal care for these rare disorders. Some opt to sanitize blood cell numbers without looking at the actual symptom pattern the patient presents. It is in your best interests to consult with a MPN Specialist to receive optimal care. Here is a list,

mpnforum.com/list-hem./

You will have far more effective collaboration with your healthcare team if you have more knowledge about MPNs. Here is a good summary article to start building a knowledge base.

legeforeningen.no/contentas...

Let me close by saying that I am not opining on whether or not you should take HU. You need to make that decision based on an informed choice. It is up to you to determine what is in your best interests. It sounds like you already have some discomfort with HU. It is quite reasonable to talk to a MPN Specialist about whether or not you actually need cytoreduction. If you do need it, then at your age -what are the best options. Certainly PEGylated Interferon and Ruxolitinib would be on the list of considerations. If you do opt for these other meds, it may be an issue with your insurance formulary as these meds are much more expensive. Yu can work with your hematology team to make that determination.

All the best to you,

[Cja1956]

There are so many variables to consider. Were you symptomatic when you were taking only one hydroxy per day? Is the increased dosage affecting you with side effects, such as more fatigue and brain fog? In other words, do you feel better or worse? Your platelets don’t seem all that high and you are very young, and it seems to me that if they were stable, in the 500’s, I don’t understand why your new hematologist is giving you so many. I’m post ET MF, having been diagnosed with Et Jak 2 in 2008, at age 52, and my hematologist was also aggressive in my care. At one time, I was on 17 hydroxy/week. You have to decide how it’s affecting you and talk to your doctor.

Take care.

[Borage]

I was in my early 50’s when I started Hydroxycarbamide and it was the drug of choice then. I would not wan’t abnormally high platelets, but it would seem sensible to discuss which is the best drug for your young age.Best wishes.

[Ramy22]

I have taken 2 500mg a day since I was about your age. I am now almost 58. Never had a side effect and do have a normal plc. It’s not a good idea to a have high or climbing plc. Talk with your doctor. Get a second opinion but your doctors will know what’s best. Good luck!

[BloodZero]

Whats normal depends on the individual. Im on 21 tablets a week. However, i lived with plaelets in the 1300 range for about 8 years before deciding to go Hydroxy. Its your choice. You can have higher platelets and less dosage if you want. The Doctors are not in control of health. We are. I found that each Dr has their own preferred way of dealing with the disease.

[Lifam]

I would get a second opinion for sure. Hopefully you'll find a MPN specialist.It doesn't sound right to increase dosage like that. Definitely not.