side effects of hydroxycarbamide

[waterloveryippee]

I am soon to start this drug, does it impact on physical activity; I do a lot of cycling and swimming at the moment. Also, has anyone experienced problems with immunity?

[saltmarsh]

I'm 76 and share your enthusiasm for outside activities. I've been on HU for 3 years with no significant side effects except possibly some added fatigue. I drink a lot of water, limit alcohol and eat healthy. I currently alternate between 500 and 1000 mg every other day. I had a difficult period when I was on a higher dosage but it was reduced a year and a half ago and my numbers continue to be good. As is often pointed out on this forum, we all respond differently so take my info understanding that. Re immunity, I got covid for the first time in December and seemed to handle it ok but I was up to date on booster. Also, as with many other drugs, you need to be careful in the sun but it hasn't impeded me in any way.

I've been fortunate that HU works for me. My own personal suggestion is to ease your way into this drug and see how your body handles it. Good luck and best wishes.

[waterloveryippee in reply to saltmarsh]

thanks for your feedback, I suppose I'm most worried about side effects affecting stuff I do.

[Holyfamiy2 in reply to saltmarsh]

Thank you for your post I am 75 and have just been diagnosed with Et jk2.I am currently taking one aspirin a day and due to meet with my haematologist as he is looking to put me on hydroxycarbamide.I too have an active life but am concerned that the side effects will have a detrimental effect on my quality of life, especially as I will probably be on the drug for the rest of my days .

[saltmarsh in reply to Holyfamiy2]

I think you will find the benefits far outweigh any side effects. My personal experience is that this drug works but the dosage has to be adjusted for YOU. So listen to your body when taking it but otherwise enjoy life. Good luck

[Holyfamiy2 in reply to saltmarsh]

Thank you so much for your reply.👍🏼

[hunter5582]

Hydroxycarbamide has asthenia and dyspnea as common adverse effects; however, that does not mean you will experience these adverse effects. We are all different in how we respond to the medications used to treat MPNs. It is worth noting that other MPN medication can have fatigue as an adverse effect as well.

Hydroxycarbamide can reduce the production of all types of blood cells, including the leukocytes. It comes with a specific warning about not using live vaccines. You will also see warnings about increased risk of infection if the leukocytes drop too low. Your MPN care team can best advise you on this issue.

The good news is that you can try hydroxycarbamide to see if it suits you. If it does not, then there are other options. Here is some important information on hydroxycarbamide (AKA hydroxyurea).

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Wishing you success on the next stage in your journey.

[waterloveryippee in reply to hunter5582]

Thanks for the information

[Ettu]

hi there.

61m on Hydroxycarbamide and aspirin since 2020

Ymmv but I felt that my cycling improved when I went on those meds

Perhaps it was just an illusion but I thought perhaps a thinner blood

Got round my system more easily!

Good luck

[Wyebird in reply to Ettu]

I agree until my meds increased considerably

[MaryandPete2]

I’ve been on hydroxycarbamide for nearly 12 months after being diagnosed with pre fibrotic myelofibrosis. I’m a regular cyclist and ride around 150-200 miles a week.

I’ve been lucky enough to have very few side effects. I have an excellent MPN specialist, who told me to carry on as normal. I rode Mizmal (Ireland end to end) last summer.

Keep riding it’s excellent therapy.

[ProudHarry in reply to MaryandPete2]

excellent!

[Janis12]

Hi, I am 65 years old and have been on hydroxy for over three years now, and I am also a cyclist (45 years and counting), go to the gym, aqua fit classes, pilates and also walking. Of recent times I have slowed down somewhat and also find it hard to motivate myself but maintaining discipline pushes me through that. My main issue is all of my aches and pains which I used to think was due to the mild osteoarthritis that I have but I have recently found out that my Tet2 mutation which drives my ET is also a driver of inflammation and that is what causes the the pain. So carry on as normal and be kind to yourself if you need to rein in a bit, maybe a shorter ride or a less hilly ride. Since developing ET I feel the cold so much more so I put on extra layers when riding and take heated hand warmers etc. With our condition we need to keep fit and eat a balanced diet (cyclists generally need HUGE amounts and plenty of carbs). Enjoy your cycling.....'To keep your balance you have to keep moving', a very true saying. best wishes.

Ps. forgot to mention, make sure you apply sun screen, we are at greater risk of skin cancer with hydroxy. I use factor 50 all year which i get on prescription from my GP. Many older cyclists develop skin cancers later in life due to UV exposure whilst cycling and many never used sun screen. I use it even though it is not sunny and I live in the north of England so not exactly tropical here. There is a good selection of sport clothing including cycling which has UV protection built into it (Mountain Warehouse is excellent), and not too expensive.

[DoubleF79 in reply to Janis12]

Great advice & good for you cycling all these years! SPF is a must for anyone but especially us

[Solyesh]

Definitely keep riding - great therapy! We are all different so how any individual medicine light affect us is as well. Other than fatigue, I really did not experience an impact on my exercise when I was on HU..I wound up stopping and switching to Peg for other reasons but you can always start w HU and see how it goes…

[waterloveryippee]

Thank you for the feedback, everyone. I feel better knowing other people have maintained their physical activities

[Wyebird]

Hi, consider yourself lucky that at your age you are only just starting it. Originally I responded well and it enhanced my physical performance. When I went up to 26 tablets a week I was feeling the affect. For the last two years I’ve been on Peg. AMAZING!!

[waterloveryippee in reply to Wyebird]

Thanks for your reply - what is Peg?

[Wyebird in reply to waterloveryippee]

Pegyasus Interferon ( I know I’ve spelt it wrong sorry) it’s an injection. Don’t be scared it’s tiny. I would class me as having a needle phobia. I cope. Unfortunately I had already lost physical condition prior to starting it. I keep on trying to up my game physically wise but personal circumstances keep getting in the way.

Nothing wrong with trying Hydroxicarbomide first though.

Please tell us of your progress.

Sending hugs.

[Frances1903]

I do wish you very well, I too take Hydorxyurea, So far so good after 5 years, and i understand exercise is very good for us!

I sometime shave slightly reduced white cells, but team are great and balance the platelet levels against reduction in white cells. After any virus such as Covid , blood counts are affected but I hope you will be well looked after.

Will look forward to hearing how you are.

[waterloveryippee]

Thank you

[DoubleF79]

Hi. I'm same age & I'm active too. I'm a little more tired than usual but hard to pin point sometimes as life is busy with work & 2 kids. No issues with immunity as white count has remained good however I will say re Covid, I've had it twice - first time Feb 22 I got IV anti-virals & was fine in a few days. I did get THE worst chest infection 2 weeks later which was way worse than Covid. Had it again Sept 23 & it was mild.

I would always say, don't go in to things looking for issues. If they arise, deal with them. Everyone is different so my experience will not be yours. Live your life, get on with things. This is not a death sentence & it can be managed so you don't even know you've got it. All the best.

[waterloveryippee]

thank you, yes I’m overthinking.

[Meatloaf9]

Hi, I have been on HU for about 31 months. I wouldn't know I was taking anything. Nothing different from before I started taking the HU. All my blood counts are WNL and my MPN specialist recommends that I stay on the HU when I ask about Interferons but will change me if I wish. I let my Hct go up to 55 before I started the HU out of fear of HU. My specialist calls HU an excellent drug with a long history. That's all I know, this is simply my experience not a recommendation for anything, talk to you mpn specialist, they should be able to give you the best advice. Best to you always.

[waterloveryippee in reply to Meatloaf9]

Thanks for the feedback

[Bluetop]

I have been on hydroxy for 7 years now and no problems. I seemed to get bone pain at first but increased my water intake and that seemed to do the trip. My medication is tweaked from time to time and white cells have remained pretty stable. I haven't experienced any reduced resistance to infection (not had Covid yet). Good luck

[waterloveryippee in reply to Bluetop]

Thanks for the feedback

[Fallorange in reply to Bluetop]

Hi, what numbers do you aim for with your WBC? What is acceptable if even a little above normal? Thanks in advance.

[Bluetop in reply to Fallorange]

At diagnosis they were up to 12 9/L but since starting hydroxy have been between 4 and 8 and mostly between 5 and 6.

[Fallorange in reply to Bluetop]

Thanks Bluets. Is that 12.9 or 129? Sorry I am new to this.

[Bluetop in reply to Fallorange]

12*9L with reference range 4-10

[Fallorange in reply to Bluetop]

Thank you!

[nightshadow]

I would say that I have more energy with the drug than without, but there are days where it is just a fatigue day and I have to work around that. Doesn't seem to be any change in frequency of colds or their duration.

[waterloveryippee in reply to nightshadow]

Thanks for your reply

[Innessant]

I have been on it for a couple of years now. No side effects at all. Give it a go. It has helped millions of people over many decades.

[waterloveryippee in reply to Innessant]

Thanks for your reply

[souplover]

I'm 75 and very active, still working (and cycling too). I've been on hydroxyurea for 4 1/2 years. I was fine the first year or two - and then I developed a lot of stomach issues, including but not limited to lactose intolerance and bloated belly.

Also my hair became curly almost right away (but that's fine with me). But not so fine is the stomach issues.

[waterloveryippee in reply to souplover]

Thanks for the reply, I already have curly hair so it will be interesting to see what happens

[FourSeasonLover]

I am a cyclist and my experience is that Hydrea has had a very positive impact.😀 From what I understand, the red blood cells are bigger, and they contain more fetal hemoglobin, which has a greater affinity for oxygen. - Kathy

[waterloveryippee in reply to FourSeasonLover]

thank you