Hydrea

[Windy51]

Hi I was scared and still am because of Hydrea but I have felt better since being on it I have finished my first bottle of 100 today it’s been 2 months today I still have pain but not as often or as severe my platelets were 842 now 652 this is in two tablets of 500 a day and I take Asprin and also just started a blood pressure tablet I have blood tests every month at the moment so I feel Hydrea has helped me even though I hate the thought of taking this poison hope all are ok I find this sight so comforting because there is no one that understands what we are all going through 🙂

[JediReject]

Hi Windy, , I felt very much the same as you when I took my first Hydrea , , But after 2 or 3 months my bloods stabilised and I didn't seem to experience any severe side effects just the usual fatigue and mouth ulcers which were a nuisance.

But I have to say those wee drugs served me well for many years and I became very blasé taking them. They have helped many thousands of folk lead a reasonably normal life.

It's early days for you but I hope you continue to do well on them and live your life to the best of your capability.

Regards - Chris x

[Windy51 in reply to JediReject]

Thanks

[Otterfield]

To some extent all medicines could be viewed as poison and many 'natural" substances too. It's just the nature of pharmaceuticals. I always bear in mind that many people would simply be dead without them (eg my sister who had chemotherapy for breast cancer). I suppose it's about getting it balanced in our heads. Especially when they work well for us.

[Windy51 in reply to Otterfield]

True

[Dovme]

It’s early days for me too. Only five weeks. Not sure it’s working yet. But my fatigue has gone - maybe it won’t last ! Think for those of us on Hydroxurea it’s good to hear some positive news. Many do well on it. As others have said all meds have lists of side effects and we are all unique in our experience of them. Wishing you well

[redumbrella]

Hi Windy, I too was nervous about going on Hydrea last October, initially I was on 500 mg every day and did well on that with bloods stableising. Last month due to bloods rising again and increase in Bone pain my Haemo prescribed 500 mg a day Monday to Friday with a break at weekends. So far do good I have had no noticeable I'll effects.

Garry

[Windy51 in reply to redumbrella]

Hi just wondering about the break on weekends did your doctor tell you to do that

[redumbrella in reply to Windy51]

Hi Windy51 yes my Haemo prescribed the break, essentially it means a change from 7 tablets in a fortnight to 10.

Garry

[catkinspolymer]

Hi Windy,

I have been on hydrea for 25 years and its worked well for my ET. No side effects and I am now 75. Town crier

[h2ogal]

ET, Jax2 +, hydroxy 2 years.

Hi,

Just here to say I was scared and fought taking the hydroxy until my brain wasn't functioning anymore and wished I would have started taking it earlier. I fought with the hydroxy & became very angry for awhile but when I started thanking it for helping me each time I took it things became much easier. I know it sounds a little woowoo but it really worked for me.

Drink water until you pop! I found that 3 liters or more a day is what works for me. I feel ill if I don't get enough water and even though everyone tells you to drink lots, it took me time to figure out how much. I keep a nice 1.5 liter thermos on the sink so there is no confusion about how much I've had.

Hope this helps and makes sense. Just had my appendix out and am not all here.

Welcome to the club

[Hidden in reply to h2ogal]

Hi h2ogal! I really needed your post.. I have had my bottle of hydroxia sitting on my kitchen counter for a couple of days now......literally freaking out about starting them..... I don’t think I can fight them off much longer. I have PV and platelets rising to 759 today and with enraged spleen and portal hypertension and possibly varices (need another gastroscopy) and yesterday found out from an emergency visit) that my main artery is thinning (because of too much blood pushing through?) my hematologist is a really nice old man but I feel that I’m the one always chasing him down after test results. Which makes me think he prescribed (over the phone) hydroxyurea because I was asking him what I should do.!! So although all my medical issues most likely says take the hydroxyurea...I’m confused and scared. Anything more I can get out of you fantastic partners in MPN????🥴

[h2ogal in reply to Hidden]

Breathe. Stop and breathe. Any breathing rhythm that feels good for you. Slow inhale, slow exhale.

There are masses of people on this website who are taking Hydrea successfully and have been doing so for years. If it doesn't work out, or if your body won't accept it, there are other options for medication. This one is prescribed first because it is so successful for so many. I've been on it for 2 years now and have arrived at a place where I am comfortable taking it and very grateful for having it. This is only my journey. Some people have minimal side effects.

Things I have learned so far...

Fatigue

Be kind to yourself. It took months for me to adjust to the fatigue because I'm stubborn and tried to push myself too hard. Some people don't get the fatigue. I have learned to pace myself but occasionally go all in & am surprised that I can.

Chemo brain

Oncologist tried to tell me it's not real. Baloney!! Also called chemo fog. It's harder to think when you first start. Writing everything down helped me, especially before a phone call I'd write down what I wanted to say & any numbers or names I might need. Having people text instead of phone calls is better for me because I can look back and reread if necessary. Some people are not affected.

Doctors

What I found with the Drs that I have had is that they didn't know anything about this disease but they know how to control the effects of what it is doing to your body. We are all learning more every day about MPN's and this website has the best up-to-date information. The Dr. I have now is very kind and compassionate and we are both learning together.

Sun

Stay out of the sun!!! Use sunblock & huge hats & gloves. I am very susceptible to skin cancers now & even in early morning can feel burning if I don't slather on sunblock & cover up completely. Put sunblock on every morning, even cloudy days. I use a mineral one that is reef safe and made for kids. Went through many different kinds and this one works best for me. I wear a long raincoat when I go out because it blocks all rays and I think I look like a sexy vampire (or maybe just a crazy bag lady).

If you can afford it, but a UVA/UVB meter. I was still having trouble with burning so I started measuring different parts of my house where I sit and found that with the top windows open, no sun block (duh). Moved sofa over a little. My house windows came with a sun blocking film on inside to block sun and my car has dark tinted windows .. (illegal, but I have a letter from my Dr. in car). Reflected sun, off pavement, sand, etc. is bad also.

Water

Drink as much as you can, then drink more. I personally feel best if I can get 3 liters a day in. . I keep a 1.5 liter thermos on the counter so I know how much I'm getting. Maybe check with your Doctor. Not sure if there are instances where you shouldn't drink a lot of water, but always best to check with Doctor.

I wish you an easy & smooth transition on your new journey.

If you write a post what's going on right now with you, you will get many more answers and opinions that will be very helpful.