Starting Hydroxie today

[harleydavidson]

How long did you wait before your first blood test after beginning hydroxie?

I have been given 500mg x 1 per day and told to have a blood test after 3 weeks. This seems like a long time.

Thanks all. Love Mel x

[piggie50]

I was 4 weeks from when I started.

[harleydavidson in reply to piggie50]

Thank you xx

[Dazakella2010]

This medication can take a while to get into your system.... I think if I remember correctly 4-6 weeks

[harleydavidson in reply to Dazakella2010]

Thank you x

[Cookiebaker]

I had my blood draw after two weeks on HU. Platelets decreases by 140 thousand in that short period.

[harleydavidson in reply to Cookiebaker]

Wow! Thank you x

[stillkicking]

When I started HU I had tests every two weeks for the first 6 weeks, then once a month after that.

[harleydavidson in reply to stillkicking]

Thank you x

[Tico]

Hi mel. I had a blood test the following week and that continued for quite a while as my blood counts were quite high and they had discovered I'd had a small stroke a short while ago. Also I was very symtomatic because of my counts and they struggled to control my blood counts. Atb,tina.🤗

[harleydavidson in reply to Tico]

Thanks Tina. Hope you’re well xx

[Lifam]

I would say around 6 weeks normally

[Kari1961]

My first was 6 weeks. In some people it can take a while for the meds to start working - after 6 weeks, my levels hadn't moved much, so they've upped the dose from 500mg, 7 days a week, to 500mg, 5 days and 1000mg on the other two.

[harleydavidson in reply to Kari1961]

Thank you x

[jointpain]

My wife started hydroxy while in hospital, and had blood tests every day, after five days of five hydroxy tabs a day, Anagrelide was added into the mix, as her platelets were topping out at 1,900.000 and not coming down. She is fine now, on three Anagrelide a day and one hydroxy every other day. Platelets easily within normal range.

[harleydavidson in reply to jointpain]

Thank you x

[jointpain in reply to harleydavidson]

No problem, from what I understand, sometimes hydroxy doesn't work too well on some people, which is why she is on Anagrelide.

[Charliemills]

Started taking the same dose in November, blood test after 4 wks, seen hemo yesterday, platelets are now within normal range, so dropped by half. I have jak2 positive, so hopefully yours will drop quickly x

[harleydavidson in reply to Charliemills]

Thank you x

[Marimar05]

When I started HU had a blood test every 2 weeks for quite a couple of months then became 3 weeks and at the moment they had to check my blood count every 3 months.take care x

[harleydavidson in reply to Marimar05]

Thank you x

[hunter5582]

Standard protocol is every two weeks, but not everyone follows that protocol.

[harleydavidson in reply to hunter5582]

Thank you x

[grgracey in reply to hunter5582]

Let me us why do we have this kind of disease is there something wrong with our lifestyle, vitamin deficiency or genetics something like that?....

[hunter5582 in reply to grgracey]

If you are JAK2+, then there is something known about that. The JAK2 mutation is an acquired mutation. You are not born with it. There is some evidence that there is a JAK2 haplotype that predisposes you to acquire this mutation. It is thought that this is why MPNs may cluster in some families even though it is not an "inherited" mutation. I do have another inherited gene condition, Neurofibromatosis Type 1, which is autosomal dominant. Both of my kids have NF1 too. My daughter is also JAK2+, but my son is not. Fortunately my daughter is thus far MPN asymptomatic other than borderline platelet levels.

So the short answer is that acquiring a MPN is not about lifestyle per se, it is about the biology of genetic mutations. However, lifestyle is very important for us to pay attention to as is good nutrition as we manage the impact of the MPN.

Hope that helps.

[grgracey in reply to hunter5582]

Thanks for that information I just do myself research of what is going on with my bosy since many doctors here don't really explain why I have this amd what is this condition all about.

[hunter5582 in reply to grgracey]

Pretty common everywhere when docs are pushed to 15 min per patient and have to make their quota of patients per day. Can be very frustrating. I have also learned a lot on my own and by sharing info on sites like this. I am hoping to attend both patient forums and some pf the professional Conferences at some point. Hope you have to chance to learn more as well.

[Cja1956]

I honestly don't remember but I think about 6 weeks, as well. I used to go an average of every 2 months after that unless I had an episode and I called him. When I started with my new doctor last year and got diagnosed with MF, I started going weekly.

[harleydavidson in reply to Cja1956]

Thank you. I hope you are well x

[Spirit123]

Sounds about normal for checking to see how it’s going. Been on it for five years now. Good luck ,you should be fine as it’s a low dose.

[harleydavidson in reply to Spirit123]

Thank you x

[Jlah]

Seems about right. Mine was 4 weeks and then 3 monthly as platelets reduced to within range quite quickly. Take care and try not to worry. Jacquie x

[harleydavidson in reply to Jlah]

Thanks Jacquie x