Hi I have just been diagnosed with essential thrombocythaemia and am taking hydroxycarbamide a little concerned about side effects .
Vonn65: Hi I have just been diagnosed with... - MPN Voice
Vonn65
Written by
Vonn65
To view profiles and participate in discussions please or .
Read more about...
15 Replies
•
I have been taking Hydroxy for 7 yrs, in the beginning I was nauseous,but you do get used to the drug,I am P V...mostly I am fine but ,as all on here will tell you,the fatigue kicks in and rest is necessary..loads of people will reply to you...best wishes Vonn,keep strong and positive ,don't let worry of side effects get you down,you may not have any!!
I too was recently diagnosed with ET and am taking hydroxy and aspirin. So far I haven't identified any side-effects although I've only been taking the drugs for 4 weeks. It's a bit scary but to be honest I think it is a case of waiting and seeing, just be assured that if there are any side-effects there will be someone on here who has experienced them and can advise how you can cope. My motto is to take the tablets and get on with life.
Hello. I have E.T. and have been on Hydroxycarbamide for 11 years now plus aspirin. I seem to tolerate it very well and have had very few reactions from the side effects. I was closely monitored when first taking it as I expect you will be.
The fatigue we all talk about on this site is a symptom of the disease and for some people the medications do help but for others they do not.
The only thing I have been concerned about is taking extra care when in the sun but as I live in the U.K. it is not a huge problem.
A lot of good reliable information is available from the MPN Voice web site and there are some very good leaflets about E.T. and Hydroxycarbamide.
Wishing you well
Judith
Welcome Vonn65 to MPN Voice, I have been on Hydroxycarbamide, and enteric coated Asprin for my ET for nearly four years now with no real problems as such, and I was like you very worried to start with as I could not tolerate many drugs without dreadful side effects, but pleased to say that since starting with this mild chemo drug my life could not be better, I enjoy life to the full, and if I have any worries there is always someone on this site that can help with advice.
Just make sure that you eat well, drink lots of water, and keep fit. I still enjoy a glass or two of wine. And when outside I wear a good sun screen which my friends send me from Australia called Solar D.
If you want anymore information, get in touch with Maz, at MPN Voice and she will send you booklets and if you want a buddy who you can talk too who also has ET and knows what and how you feel, I do not know where I would of been without there support, on here they are all amazing and very rare people.
Kind regards
Jean
Hi Vonn, i have been on Hydroxy for almost 6 months now , and seem to be coing okay on it , i do suffer with bad fatigue , and few headaches , etc but in the big scheme of things it could be worse we all react differently , and i started of on low dosage then went over over several weeks , all the best Holly
Hi Vonn, first of all you look fab. I have been diagnosed with ET for 4 years now and as I was over 60 at diagnosis, 66 in fact, was put straight on Hydroxy and aspirin. I tolerate it quite well, headaches yes, but I had them before, fatigue, yes but I am now 70 and am always on the go. Eat well, exercise and keep the fluids up, particularly water and I`m sure you will be fine. Just not sure about the lovely sun tan you have there as, if you read your hydroxy leaflet, we have to keep out of the sun.
Good luck, Sue
I was diagnosed with ET a year ago and went straight on to 3 capsules/day.
I did get some stomach upset, but that settled down and it has done it's job to get platelets down. I am now on 2/day and 1 at weekends. Sometimes get tired, but I am 66 and still work full time.
I actually feel better than I did before diagnosis as there were lots of things going on - pain in toes, vision problems etc - that have now stopped as they were symptoms of the ET.
So good luck and keep the fluids up.
Stephen
HI sorry to hear about your illness.
My husband has pv jak 2 positive he's been on hydroxy for 1.5 years now he's been great no problems at all however he does have a dry mouth.
It's worrying as it's a chemotherapy tablet but it's only a tiny dose of it.
Hope you tolerate it well
Tracey
Hi Von. I have ET. diagnosed 3 yrs ago. I'm 53 work full time. I take asprin and as of yet haven't been prescribed Hydroxycarbamide. I know it's only a matter of time. My platelets continue to rise. I suffer migraine and have had them all my life.
I can only say this site is a God send. Really helped me. I am not afraid anymore. drink plenty of water. eat well . More than anything live your life to the full. I'm due to retire next year. I will be 54 . my job allows meto.So I have plan to buy myself a camper van and travel.
Good luck.
MazcdPartnerMPNVoice
Hello Yvonne, welcome to our forum. As you can see from the replies you have had so far, we all completely understand how you feel about the Hydroxycarbamide, it is scary when you are given something like this to take, but also as you can see, it is a very well tolerated drug and many of us are taking it and feeling fine, with very few side effects, so hopefully you will be the same. I can send you some of our information booklets if you would like some, just email me at maz.cd@mpnvoice.org.uk with your postal address, you can also download them from our website
mpnvoice.org.uk/about-mpns/...
Best wishes, Maz
No side effects for me -I have Pv and all my blood counts went down to normal in 3 weeks and after 3years since dx have stayed that way - I'm lucky. Good luck .
And hydrea has made my hair curl slightly-I take 9 a week.
