Advice Please

[Connie46]

This is one for Maz really but if anyone else has any comments, please feel free to post them. There are two points I need advice on, the first is regarding the liquid Hydroxycarbamide that has been recommended for me. I have been waiting for this since the 17th July when I last saw my haematologist. I called him yesterday to ask when it was expected and he just said that he was still waiting for it and I would be informed when it arrives. My question is, how long is a reasonable time to wait for this "vital" medication? My second question is regarding the blood form that he provided me with on my last visit. This was for a blood test shortly after I start the medication. I have since noticed that he has requested a FBC and a liver function test. I was under the impression that once you started taking Hydroxycarbamide you had to have a kidney function test too. Your help would be much appreciated as I'm feeling a bit lost at the moment.

Connie

[Mazcd Partner MPNVoice]

Hi Connie, sorry I don't know how long it can take to obtain a supply of liquid hydroxycarbamide, I suppose it depends on where it has been requested from, maybe you could ask his secretary if she could check for you and give you an indication of how long it will take. With regards to the blood tests, again, query this with the haematologist, or one of the haematology nurse specialists in the department. Best wishes, Maz

[Connie46 in reply to Mazcd]

Thanks Maz.

Connie

[Annie46]

I had no idea at all that this was available ... I have huge problems with swallowing capsules & since my diagnosis have emptied the contents of them into 180 mls of tepid water . I have a designated little container with a screw top lid in which to shake the contents . Macmillan info says this is 100% ok - & I've done this since diagnosis several years ago . Hope you get your meds sorted very soon 🤞😊Annie

[Connie46 in reply to Annie46]

Hi Annie,

I was told by my haematologist that breaking the capsules open and putting them into water to swallow was not a good way to take this medication. If you feel you need the liquid Hydroxycarbamide then you should ask for it. You are entitled to it and it might make taking the medication a little easier.

Take care.

Connie

[Annie46 in reply to Connie46]

Thankyou Connie. As I've been absolutely fine taking it this way & my haematologist is more than happy & doesn't have any concerns whatever... horses for courses !!! Am very happy to carry on as I've been doing for years . Others on the forum may well be helped by knowing it's available in liquid form . Enjoy the weekend ahead 😊

[zvinkovic in reply to Connie46]

Hi,

Here are instructions to pharmacists for making liquid Hydroxy (for children with Sickle Cell Disease) and you can see that it is made using capsules and that it is similar to what Annie46 is doing.

Ingredients:

Hydroxyurea 500mg capsules # 24

Sterile Water

Syrpalta® or simple syrup vehicle

Procedure:

Empty the contents of the capsules into large beaker (or mortar if not using a magnetic stirring rod and plate).

Add 60 mL of sterile water and stir vigorously until dissolved.

Note: this may take several hours and the excipients in the powder will remain undissolved. The hydroxyurea will descend to the bottom of the beaker while the excipients will float on the top.

Do not heat. The use of a magnetic stirring rod and stirring plate will help the dissolution process

Once the hydroxyurea has completely dissolved, filter the solution to remove the excipients.

Add sufficient quantity of flavored vehicle to a final volume of 120mL.

(final concentration = 100 mg/mL)

Best wishes

[Connie46 in reply to zvinkovic]

Thank you for this information. It's amazing what you can find out on this website.

Regards,

Connie

[zvinkovic in reply to Connie46]

It is new to me too, I have ET since 1999, I used Hydroxy in the beginning and never knew it could be taken in liquid form. I also thought it is not advisable to take it without capsule shell as it can cause mouth ulcers even when taken as a capsule, but there it is. With this illness one learns something new every day.

Hope you get your medication soon.