Having been a participant of this forum for a while, I am so appreciative for the knowledgeable information it provides.
I am in my 70' s and was wondering if anyone else was taking Hydrea every other day with a daily low dose aspirin. If yes, how long?... any side effects?
At the urging of my Haemo, I will be starting the Hydrea treatment next month( every other day)500ml
Thank you so much as I am totally scared to start...platelets are now at 1198..also taking meds for high blood pressure.
Heather
Written by
georgevanier
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Given what you describe, cytoreduction is certainly indicated. The question is which agent to use. There are two first-line treatment options, hydroxyurea and Pegasys. Suggest you review the pros and cons of each before making a decision. There are also second-line treatment options (Anagrelide, Jakafi) and drugs in clinical trials.
Bear in mind that we are all different. We each present differently and react differently to the treatment options. I was unable to tolerate HU even at low doses (500mg every other day). I experienced oral ulcers, canker sores, thrush, leukoplakia and constipation. HU was also ineffective for me in terms of adequately controlling the thrombocytosis and erythrocytosis.
I have done much better on the interferons. Started on Pegasys then switched to Besremi. The IFNs have been more effective and much easier for me to tolerate. It took about 8 weeks to get the platelets to target. I am currently in a Complete Hematologic Response. I have only experienced minor adverse effects (mild itch/rash, mild leukopenia). There is no question that the IFNs have been a much better choice for me.
We are each different in how our MPN presents. I have had a MPN for 30 years. It was ET but progressed to PV about 8 years ago. I also have the NF1 mutation, which increases my risk of progression. I did not tolerate HU and do well on the IFNs. Others have precisely the opposite experience. Some tolerate HU and benefit from it.
Suggest you review all of your options with a MPN Specialist rather than a regular hematologist. Here is a list. mpnforum.com/list-hem./
You can also do a bit of research on your own. Here are some resources.
I am 77 and was diagnosed in January of this year. I waited till May to start because I was so terrified. After talking to the MPN expert at Stanford we decided I’d go every other day. At that point my platelets were about 740. He wanted them under 600. Now I’m at 520 and no side effects. They wanted me to up to daily because they were coming down slower than they liked. I said no and added one pill every two weeks. So I take 8 total in a14 day period. I garden, walk six miles a day, take a low dose statin for cholesterol and a baby aspirin nightly. That’s it except some supplements
My anxiety was making everything worse so I got in charge of me and settled down I drink a lot of water daily and have cut out all processed food I still worry—my natural state-but it doesn’t help anything I find acupuncture helpful and go every other week
It’s a scary, confronting journey but very manageable
Thanks for sharing. This provides me some comfort as my anxiety is still high. My meds. will be every other day also hopefully it works. Stay well...Heather
hi, I’ve been on Hydroxycarbamide for a few months now I’ve been gradually given more every few weeks to get my platelets under 500. I also take baby aspirin every day. At the moment I take 1000mg (2 x capsules ) every day and 1500mg on a Saturday and Sunday (3x capsules) my platelets were up to about 887 and I’m now 60. But! To be honest I feel fine, no side effects that I’ve really noticed. I’ve heard of some people taking 4 capsules a day !! So! It would appear everyone is so different.
I like you, was a bit nervous but I believe they even give this drug to children if needed !! Hopefully you will be ok too.
Hi. I am 72 and diagnosed in 2012 with PV, I’ve been taking Hydroxycarbamine 1G daily, since being diagnosed. I have tolerated it well minimal side effects. I take it every night and so far so good. I am also taking Asprin and Statins.
Hi, I am 72 soon to be 73 with PV currently. Went from Et to PV in 3 years time. No treatment until I was 71 and started HU. Have been taking HU for about 15 months. Dose finally settled at 9 per week, that dose has kept all bloods WNL for the last 9 months. I have no side effects from HU, don't know that I am taking it. We are all different in how we respond to medications. I also hated to start the HU but it has been uneventful so far. So far I trust my mpn specialist and will follow his recommendations, we have hour long discussions about every 4 months. I think that seeing a true mpn specialist at least once a year is very important. Best to you.
hi , iv been on hydrea for 10 yrs 5 days a week along with small asprin , it keeps my platlets at around 400 and all the symtoms I had before are gone , I found at the beginning I would have days of extrene tiredness , but that soon went as the dose came down and I now have no symtoms and a completly normal life , maybe im lucky , but I honestly do not feel I have any illness on this medication ,
Thank you, so good to hear you are doing so well, this gives me some comfort as I will be starting on hydrea next week every other day 500ml. Can I ask what time of the day you take it? Hope it works for me , Keep well
I usually take it in the morning, I dont think it matters really , although its probably better to have it the same time to avoid overloading the system
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