Sorry to hear that the PEG did not work out for you. I am the exact opposite. Could not tolerate HU but the IFNs worked well for me.
We are each different in how we respond t the meds. Some like to take HU first thing in the day. Other right before bed to better manage the adverse effects. You will have to experiment to find what works for you.
As you start on this next stage, it is important to have some information about HU. Here are a few resources that may be useful.
Hi , I take my two tablets straight after breakfast, washed down with a large glass of water plus my aspirin also dissolved in a small glass of water. I then make sure I drink lots of water during the day to keep hydrated. If I took the tablets in the evening, I feel that I wouldn't stay as hydrated.But I do know after reading past posts some folk find evening best, as they suffer from tiredness as a side effect.
I take mine at bedtime but best to try morning or night to see what suits you . I’ve been on them for nearly ten years and manage quite well. Have the off day now and then with feeling lethargic but go about my daily routine quite well most if the time . Hope the pills suit you . Stay well. Hazel
Hi Hazel It’s good to hear that hydroxycarbemide is still suiting you after 10 years. I’ve been on it for just under 18 months but am concerned about my hair thinning and worried about skin cancer in the future because of this medication. Can I ask how your hair and skin have been? I’m on 9 tablets a week and I’m 71. Thank you Irene
I do wear a wig as hair not good . Very thin.skin is ok but I stay out of suns d cover up if I do need to walk out in sun. Wear factor 50 and be careful . Good luck in on 27 pills a week . Now gave high red cells and waiting for venesection appointment. Platelets are controlled quite well.
Hi Hazel As it’s been on my mind could I ask you how you get on with wearing a wig. Did you find your hair thinning got worse as your tablets increased? You seem to be on a high dosage. I’m finding my hair thinning very worrying. Thanks Irene
I use Simply wigs online . They are great . I go for less volume ones . More natural . They cost about £200 but you can get £40 off fir having illness you don’t pay vat. I like short styles . Sally by natural image is my favourite. Gives me confidenence. People always say how I e my hair is . Take a look at the website .
Thank you Hazel. The wigs do look good. Are you able to wear yours all the time and how do you get on if it’s hot or windy, I really appreciate your advice. Irene
I only take it off at night . The ones I buy are lightweight . Of course the heat on a very hot day can be a bit much but I stay out of the sun anyway because not good to be out in the sun whilst taking hydroxy. You can order a couple and try and return one you don’t like to Simply wigs and they are quick with a refund . Choose one similar to your natural colour and style then it’s not obvious . The wind isn’t a problem . I don’t use a wig cap underneath as they are warm and slip . Only time mine is off is at night .
Jumping in here because hair loss has been a concern of mine too. After 14 years on HU, my hair has thinned, but is still manageable. Funny thing is, my hair now has some curl, even my eyebrows. (I was born with thick, fine, stick straight hair.) So, now I have to trim my eyebrows to avoid the mad scientist look.
Hi, I take mine, 1 or 2, in the morning on empty stomach. My theory is that I want them absorbed as quickly as possible to not irritate the stomach or esophagus. My Doc says it doesn't matter. I have been on HU for 2 years, would not know I was even taking anything. Blood counts all normal. I guess I am just lucky. Best to you on your journey.
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