Just wondered if anyone could give me a bit of advice here. I have been on Hydroxy & Asprin for 4 months now and my platelets seem to be doing well, consultants seems happy but as I take my meds in the morning at breakfast I then take a good few hours of feeling very out of sorts, bit unbalanced, light headed and achy … I seem to feel ok when I first wake up but this comes in after taking meds ? It’s not a good feeling and rather scares me sometimes, then obvs the anxiety kicks in which is never helpful ..
Would I be better taking these at night time instead or is it something I should be reporting to the medical team?
Thanks for any help x
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Yoganana1
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Hi Yoganana - I have been taking Hydroxycarbamide 500 mg. daily for one year. I take it at breakfast time and like you I end up feeling a bit strange - but with me it is more very tired and sleepy and a bit nauseated. This usually passes within an hour or so although occasionally I feel slightly nauseated at various times of the day.I did ask my Macmillan nurse and she said I could really take it at any time of the day including before bedtime.
I did not change as I am also on rivaroxaban (blood thinner) and this has to be taken at dinner-time as it requires a degree of fat to make work best.
I do find the hydroxy makes me very tired although I have other health issues so am not completely sure what is causing such weariness (and I am 80).
Thank you for your reply, I know what you mean about not sure what’s causing symptoms. I have been on HRT for years and this has now been reduced as Dr feels I should be taken off it 🤦🏼♀️ So I wonder sometimes where the symptoms are coming from in my body and which meds are causing it
I had the same problem I now take my thyroxine at 8 am as always ,then 9-30 have breakfast then aspirin ,then around 2pm hydroxycarbamide this works for me ,we are all different when I took them all in the morning I felt unwell ,after now it's great
Thank you, I think it’s all going to be a bit of trial & error ! I just presumed morning would be best but it’s not really working out so I will try it different times to see how it goes
I take my hydroxyurea and baby aspirin at night before bedtime. I still have shortness of breath in the morning but I don’t want to add to my fatigue in the daytime by taking the medication in the morning. I take 1000 mg of HU every night. My doctor wants to increase it by having me take one extra per week. I’ll probably take that one in the morning and then see how I feel.
Thank you for your reply, I have always taken it in the morning but feeling rather fed up with the fatigue and feelings of very odd sensation after wards for a few hours so think maybe trying evening might be good and at least I will know if it makes any different
As others indicate, you can try taking at at night if you with. It might be easier to tolerate with food though. The instructions say you can try it with and without food. Perhaps a bit of trial and error on that one.
Some of us cannot tolerate HU. The good news is that there other options if this proves true for you.
Thank you Hunter, as always great information, I have read the links and trying to do my research as much as I can. I think I’ll try the evening meds and if that doesn’t work or I get problems again I will need to get in touch with the care team and see what they say or can offer me
Hi, I have always had problems with my tummy and pills so after a few experiments I found aspirin in the middle of the day after a small snack and Hydrea at 10pm ,again with a small snack (e.g. piece of toast) works well. I am asleep before my tummy has time to register ha ha. Good luck. Valerie
Hi again, I didn't find it immediately obvious that night time was the best and had a week or so of feeling nauseous during the night but stuck with this schedule (on other's advice) and it worked.Vx
Thank you, I have been trying to take my Hydrea in the evening before bedtime and although only 3 days now, it does seem to be better 🤔 I’m hoping it is that that’s making the difference and not just in my mind ? Time will tell I suppose x
I always took mine 9 or 10pm at night it worked well. However after 5 weeks my stomach decided to reject them so off it currently to see if settles . Julia .
When I started with HU I asked for advice on a big Facebook group as to time of day and the general consensus was take it at night. I don’t like mixing meds (no real reason, just the way I feel) so I take the baby aspirin after breakfast and the HU after dinner. Any supplements (like turmeric ) I take at lunch. After over a year on HU I’ve had no problems.
Thank you, sounds like a great way of spreading it over the day. I will just need to remember to take mine in the evening as I am so used to doing it straight after breakfast. Great to hear that it’s working well for you too and hopefully that will be my answer to the problem 🤞
I have been on 500 mg of hydroxyurea for over a year now, and have experienced a great deal of fatigue and stomach issues. However, I had both before, so have been working with a GI doc and MPN specialist to find a solution to symptom reduction. I'm 70 with very low tolerance to medications, so the MPN specialist is reluctant to change to another medication, as I have finally reached a 500 platelet count and a more tolerable symptom level. Because of my GI issues, I don't like to take the meds at night, and have found 4 pm to be an acceptable time for the fatigue issue. I think we are all different and have to find what works best for our systems. It does definitely take some experimenting. Sending you the best in your journey!
Thank you Ritazz, I think it very much a trial & error thing with these meds. I’ve never really had to take any other medication long term before. Only HRT and they are just patches. So never thought about it making me feel unwell, I have found the fatigue in the daytime very hard to deal with sometimes. Especially when I’m trying to keep up with my grandchildren 😂 I wish you all the very best
Hi Yoganana1! I’ve been on Hydroxy and aspirin for a year. Started them in A M. Because of nausea and fatigue switched to bedtime. Helps me sleep and no side effects in the AM. My dose of Hydroxyuria is 500 mg. All the best to you.
Thank you, I am on 500mg daily also but I really wasn’t sure about which time is best to take them as I don’t think I have ever had the best advice, apart from this wonderful forum with lovely people to help me. I have learnt much more from here than from my care team I am under Wishing all the very best to you too
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