Hydroxy question

[john0084]

When my haemotolgist issued me with hydroxycarbamide tablets he gave me a box of a 100 which will last me 6 months as I only take 1 every other day, I see him every 2 weeks at the moment so was wondering if this was usual practice?

[WileyFrench]

Hi - the dosages will vary with each person’s medical condition. I started with one every other day and now we’re trying every day to get my platelets down lower. I have ET and get blood tested every two weeks at the moment. I expect that will lessen when platelets are where haemo wants them to be. I hope that helps answer your question a bit.

[piggie50]

Hi John,

I’m unsure as to what your question is? Being prescribed 6 months worth of Hydroxy, taking one every other day or seeing your consultant every 2 weeks?

I always have about 2 months worth of Hydroxy in reserve, I visit every 12 weeks and they always prescribe 12 weeks worth. I take one very day and two on Sundays. it’s good that you are seeing your consultant every two weeks, they are obviously keeping a close eye for the moment and as WileyFrench says the dosage will vary depending on your counts.

Best wishes

Judy

[john0084 in reply to piggie50]

I probably sound confused. I haven't long been diagnosed. I just wondered why I was given so many as I only need 3 or 4 a week. But thanks for your reply

[piggie50 in reply to john0084]

I agree it is a lot, my heam gave me more last winter in case the weather was bad and I couldn’t get to my appointment so I always have a surplus. At least you don’t have to hang around in pharmacy for a while!

[Annushkah in reply to piggie50]

You really are onto the key to the quality of life issue!!! You are never going to get away from MP/ET but I try everything to stay away from docs, hospitals, pharmacy and living your life in the medical arena. It’s easy to get caught into medical land and forfeit your own life. Do and be anywhere and everywhere you choose for your life and EVERYONE because bottom line this will shorten our lives!!

[Annushkah]

I am st it since last winter. 500mg for months, then up to 100mg now for three months and platelets have gone from 1.5 mil to 550k. It’s all crap shoot

[MCW22]

I only get a month's supply at a time. Getting them put on my repeats list was like trying to get blood out of a stone.

[Nickthedevil]

I am given 120 at a time. I used to be on 10 x 500mg per week but now I am only on 5 x 500mg per week, but they still issue 120 at a time. I think each doctor prescribes differently.

Karen

[Ovingite]

Hi John,

I have an annual review with my consultant hemo with quarterly phone reviews. Because hydroxycarbamide is a red list drug, very few pharmacies are allowed to dispense it, and I have to get them from the hospital. At my last consultation she gave me 2 X 6 month prescriptions (500 tablets in total). Much easier!

John

[Ebot]

Be grateful for a large supply! Getting the drugs from the hospital pharmacy can add a couple of hours on to a visit!! My haem tends to stockpile my HU to save me the grief. My guess also is that your visits will become less frequent as your PV becomes more under control. You may also find the dosage might change. All the best.

[john0084]

Thanks for all your replies, it's very reassuring to know there's such good support on this site.

[Wyebird]

Hi I’ve found that it really depends on the consultant. I think it’s nice to be given so much as it saves you having to queue for you meds which can sometimes be extremely time consuming.

The distance you have to travel might also influence the amount you are given. You never know when clinic is going to be cancelled or if you are ill.

[azaelea]

When you were first prescribed with Hydroxycarbamide did you have to take pills for gout prevention,Allopurinol? I did for 7 days and wonder if I will have to take them again when I re-start Hydroxy after Radiotherapy for breast cancer.

[john0084]

No It hasn't been mentioned I wonder if they can tell with your full blood counts. I hope the breast cancer therapy isn't to traumatic, Regards john