I started treatment just 6 weeks ago and I've been on 6000mg Hydrea (1000mg Mon-Thurs and 500 mg Fri -Sun) now for about 4 weeks. Apart from the usual physical side effects, I feel quite "flat " mentally and have lost interest in most of my activities pre-treatment (exercise, healthy diet, other interests). I cannot motivate myself to resume these interests and wonder if things will get back to normal. My diet has been limited to what appeals - brown bread, Vegemite, boiled eggs and occasionally cheese. Today I will try a chicken soup. I am a little nauseous and have meds if it worsens.
My question is will things return to normal when the platelets return to < 400,000 and I'm on a maintenance level of meds? I am hopeful this will be at the end of March. I've reads posts where people feel great once platelets have come down....I hope I will be able to echo that.
Sorry to hear you’re experiencing these symptoms. As you have already noted, things may improve when your platelet levels reduce, and hopefully a lower maintenance dose maybe initiated, which is what happened to me when I was initially placed on hydrea.
Importantly, hydrea tends to lower all blood cell counts, so it’s worth keeping an eye on your red cell count, especially as you’re describing lethargy type symptoms, so maybe check your recent blood counts.
I don’t know what time you take your medication, but it might be worth taking them before you go to bed, so you can sleep through any side effects.
It’s also worth noting hydrea isn’t for everyone, and there are alternatives if your quality of life is significantly affected.
I’ve been on 7000 mg, 1000 per day. I feel much better because the hydroxycarbamide reduced my very high platelets count. We will revisit after my bloods at the end of March. I take 2 pills x500 before bed. Or in later evening 8pm or later. It is an adjustment but I do believe it will work symptomatically to reduce high platelets if you can take it. I feel so much better but at first it was awful. There is a problem for me with itchiness but it comes and goes now and I wear helpful garments and fabric. I make my own herbal remedies and I supplement with my hematologist’s approval like a calendula and comfrey skin salve and oat straw infusion for example. I also use nettle infusions but I must be careful as I take an anticoagulant rivaroxyban. I really want to get a massive reduction on this med too eventually. I’m young at 55 and was diagnosed four months ago with Jak 2 and pre- fibrotic. This site will help you tremendously to not feel alone, to be educated and informed🌷🌱🌷🌱🌷🌱
Everything you are reporting is consistent with the common side effects of hydroxyurea. Asthenia (fatigue), dyspnea (shortness of breath) and nausea are all well known HU adverse reactions.
If you were not having these issues prior to being on HU it is more likely that the HU not the thrombocytosis causing the adverse effects. If this is the case then reducing your platelet levels will not make the issues go away. Some people are able to tolerate HU and benefit from it. Others cannot. I would be one of the latter. I experienced HU-toxicity even at very low doses. You will hear from others on the forum that they tolerated it well and benefited from cytoreduction. We are each different in how we react.
The good news is that there are options. Some people are able to tolerate HU at lower doses. If you cannot tolerate HU at lower doses, then the adverse effects will usually resolve when you discontinue it. There are other medications what can be considered if you cannot tolerate HU.
It is very important that you let your doctor know that you are experiencing significant side effects. Unfortunately, some of us experience a dismissive response when reporting issues with HU. Hopefully you will not run into this problem. If you do, the know that assertive patients receive higher quality care. Passive patients do not. You will need to make clear that you cannot tolerate the adverse effects you are experiencing if that is how you feel.
Hi there. My experience with Hydroxy has only been positive. However my consultant (I’m at Guy’s) was very cautious about dosage when I started and then amended the dose as necessary upwards a couple of times. Less was more seemed to be the principle! I wonder whether it’s worth discussing lowering the dosage with your haem team.
You don’t say when you were diagnosed but it’s just possible that some of the things you are experiencing are the consequence of being recently diagnosed or facing a change in treatment. Again, this is definitely something worth talking over with your consultant or perhaps with your CNS (Clinical Nurse Specialist). Wishing you all the best.
Hi. Is it possible that when you began taking the medication the reality of having cancer finally registered and as a result you’re feeling flat? Flatness is consistent with depression or being very frightened or overwhelmed. I encourage you to talk to your GP & a therapist. I’ve never seen that listed on here as a result of the medication. Please let us know how you are? Katie
P.S. I hope you know I’m not negating the seriousness of what you’re experiencing. And I realized if your blood cells came down too far you maybe became anemic. Katie
hello Junegal52, I am so sorry that you are feeling like this, it might be best to phone your haematology nurse specialist to discuss this with her/him and to explain that you feel nauseous all the time and are not eating much and also that you are feeling flat and have no interest in your previous activities, it may be that you just can't tolerate Hydroxycarbamide and then you can discuss alternatives. Best wishes, Maz
I started on 500 mg of hydroxy daily about 8 weeks ago and have the absolute opposite results. You may be one who does not tolerate hydroxy at all well. Perhaps your doctor can recommend another medication. Best of luck!
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