How soon should HU for ET work?

[lizzziep]

I've been on HU for 5 weeks, 2 weeks on 500 mg a day then 3 weeks on 500 mg one day and 1000 mg the next. When I started my platelets were about 1060, after 2 weeks on HU they were at 887 and after a further 3 weeks on the higher dose they are now at 805. I've seen the hem today and they have put the dosage up to 1000 mg each day. I go back on Christmas Eve for another check. The hem said my platelets should have come down quicker and it may not be suitable for me. I wondered what other alternatives there were, or whether I should persist with the HU? I had headaches and lots of acid in my stomach at first but that has faded alot now. I've been to the dentist today and my mouth is clear. I'd welcome any input.

[Hidden]

Wait and see on Christmas Eve. I had similar reaction and after being put on the higher dose (same as you are now on) it started to work better. I have remained reasonably stable on that dosage and my platelets dropped dramatically. They have to experiment slightly to get the correct dosage for you, not wishing to give a higher dose than is needed. Good luck.

[catkinspolymer]

I t took 3 months for mine to come down, My hem was happy to wait He increased the dose to about 15 x 500 mg tablets a weel but it has now fallen back to 11 to 12 . as I have said before it works well for me for now nearly 19 years

I am surprised that your hem wants such fast reactions , sorry a bit brief but taking my daughters to Harry potter experience despite they are both close to 30

ton crier

[lizzziep]

Thanks, I feel a bit easier - again! I'm so glad I found this forum. I've had hardly any information from the hospital.

PS Hope you enjoyed Harry Potter!!

[linds]

Lizziep, I can't offer any info on the meds bit as still on venesection (PV) but your comment about being glad to have found the forum just matched my sentiments this morning exactly. My feelings at the moment are that there is nobody in the medics field I can talk to and it could be really scary if the forum/blog was not as it is. Thanks to everyone who becomes a support, confident and friend who supports us all through whatever is being thrown at us. Keep positive. Best wishes.

[Val_P]

It took about a year & half for me to reach the dosage of Hydroxy needed to fully control my platelets. I'm now on 2000mg daily and platelets have stabilised at 420 ish. So go with the flow.

[Twinkly]

Good morning ,I was diagnosed 2 years ago ,at that time my blood was clotting and very thick the first time the nurse tried to venesection me the blood would not flow,I was put onto hydrox that day with clopidogrel for blood thinning ,I went 2 weeks appointments ,slowly my blood thinned and the venesection became easier ,after 6 months I was told I had good readings so no need to be bled ..I went 6 months .feeling better ,then my readings started to get irratic again , tired ,grumpy,hot sweats at night ,bruises,took ages to heal ,my busy life was getting difficult to continue,,also my hair was sparse and thin ,it was hard to cope with so many side effects ,MPD voice was a godsend for me ,as I didn't understand what was happening to me,a patient at the clinic gave me a copy ,I bought an I pad ,to get connected ,I'm now so lucky to be on the Majic trial ,taking ruxolitinib 5 a day ,,and I'm doing well ,no venesection for 15 weeks, fingers crossed ,,,,,,

[Reflex4]

Hello lizziep,

My partner was diagnosed with ET back in March/April last year, his platelet count was 1475. They started him on a very low dose to begin with 500mg every other day for a week, then everyday for a week or so, after that it was increased to 1000mg's a day, once his platelets got to around 800 they start to go up again so they increased the dose to 1500mg a day and so far that is where he has stayed. His platelets had gone up a little again in December, his next appointment is in February and I have everything crossed that they have come back down again and not gone any higher as the last thing any of us want is for the Hydroxy to be increased any higher - But as Val_P said she is on 2000mg's a day. It all takes time, months even, so don't let your Heam give up on Hydroxy. Good luck and we are thinking of you

[lizzziep in reply to Reflex4]

Thanks Reflex4, When I went back on Christmas Eve my platelets were down to 650, so quite relieved about that. I'm still on 1000mg a day, I go back beginning of February, so hopefully I'll carry on in the right direction - no guarantees I know!! It's so good that this forum exists, I don't get much information from the hospital at all.

[Reflex4 in reply to lizzziep]

That is great news lizziep, so pleased for you. Do you also take Allopurinol and Aspirin?

[lizzziep in reply to Reflex4]

just aspirin, hu at night, aspirin in the morning.

[Hidden in reply to lizzziep]

E.T. site full of lots of information

[Hidden]

Hello Lizzziep

Read a few of your posts. I had posted somewhere on this forum, the name of the site. You can try googling mejthrombocythaemia, (spelled differently than thrombocythemia, you will find a few old posts that were printed from their forum. Also, they had just announced their site would be on youtube, type in essential thrombocythemia, and it will guide you through on how to join. There is loads of information on E.T. and what works and what doesn't for some, as well as a few who are trying alternative. Very friendly.

I hope this was helpful to you.

You mentioned that you take your Hu medicine 1,000 in the evening. Most people take it twice a day morning & evening. Just curious why your doctor has you taking it this way. You might want to consider asking him on your next appointment. Keep in mind, we are all hear to learn from one another.

Hope to hear from you.

Have a nice day.

Adail

[lizzziep in reply to Hidden]

Thanks for that info Adail. The doctor recommended taking the HU at night so side effects like fatigue are lessened during the day. I'll mention taking it twice a day when I go back in a couple of weeks.

Kind Regars, Christine

[Planting]

I get the impression that the haems know what they are doing so I left it to them. Diagnosed 18 months ago and perhaps I have been lucky so far...stabilised after about 4/5 months. I am sure that they will get the dosage and the drug right eventually.

By the way is there anyone on this forum from Lancashire?