Comparisons Please for PV Treatments

[reliabletony]

My haematologist is telling me that I have to stay on Hydroxycarbamide doses of 1gm a day for Monday to Friday and 1.5gms a day for Saturday and Sunday even though my blood count for red cells, white cells and platelets were normal at my last blood test. She says that this will reduce the regularity with which I have to have venosections. She is concerned that having venosections every 2 to 3 months will make me increasingly tired during the day. I am concerned about the long term side effects of taking such high doses since I have already been taking Hydroxycarbamide for over two years and having venosections for five years. Can anyone else give me the details of their own long term experience of having PV? How often do you have venosections? Has the frequency diminished with higher doses of Hydroxycarbamide? Do you feel less tired with having less frequent venosections? I'm just trying to get a sense of what I can expect in year to come.

[jane13]

I was in similar situation after about 8 yrs of hydroxy/venesections and my haem gave me the option of more hydroxy and few venesections or stay as I was. Venesections seem to be fairly benign but I was told they produce smaller stickier platelets that increase stroke risk.

I didn't increase my hydroxy dose but with hindsight I wish I had I had bad bone pain and night sweats and have subsequently developed MF. I think there is a chance that more hydroxy would have slowed down my transition to MF.

I don't suppose the symptoms leading to MF apply to you, but just wanted to make the case that higher doses of hydroxy aren't all bad news.

There are several studies that suggest no added risk in taking hydroxy for much longer periods than we are talking about, up to 20 years from memory.

I would be unconvinced by the tiredness argument: so many things may cause tiredness including the disease itself and the hydroxy!

Good luck

[revfee]

I have been taking hydroyxcarbamide for more than 29 years, currently on 1gr 4 days and 1.5gr 3 days. I haven't had venesections for a long time now as my platelets were going up too and it was felt that venesections stimulate platelet production... whilst I would rather not take HU and would prefer to be on the lowest dose possible, I am grateful that I get few side effects.

I think the fact remains that many of us get tired because of the condition, whatever we take or do, and recurrent venesections may cause anaemia which will also cause tiredness.

Mostly, I live with PV and try not to think about it too much, concentrate on living my very full life - though when things are going wrong I think that gets harder doesn't it?

Good luck! Fee

[tatty123]

I have ET and not PV but do take 1.5g of hydroxy daily. I would much rather take a lower dose but it does work and I do not get too many side effects.

I would say if something works, and it is the better of the two options, then go for it and see what happens.

Fingers crossed that it works for you.

[KatherineRose]

My husband was diagnosed with PV 6 weeks ago. His consultant is using hydroxycarbamide to bring his cell count down but she said that she would like to get him onto interferon as soon as the counts are stable as she said that my husband is young (45) to be diagnosed with PV and she prefers interferon for potentially long term use. A recently published research paper that we read last week showed that whilst the immediate side effects of interferon can be more troublesome than those of hydroxycarbamide it has a better outcome. The results were not statistically viable owing to the small data set (I think they tested 60 PV sufferers over 4 years) but the results were considered significant and the basis for further research with a bigger data set. Let me know if you'd like more details. I've got a hard copy of the paper but could scan it and email it to you if you like. Best wishes, K

[MarybellM in reply to KatherineRose]

Hi Katherine

Like you, it's my husband who has the PV. I'm more and more aware that it's important to get to know all about these MPNs ourselves rather than rely on medics and accept every decision blindly. I suppose cost will come into it when doctors decide on drugs to try. Thank goodness for this forum and MPN voice. I know I can find honest answers and hear about all the possible treatments available. Good for you, finding and reading that report. Would like to know more about it. My husband is on aspirin only at the moment but he was on Hydroxycarbamide for a short time (experienced side effects) and it's good to know there are options if drugs needed again in future. All the best, Marybell

[reliabletony]

Thanks to all for your replies. It's comforting to know that some of you have been on hydroxy for much longer than I have and are still free from side-effects. I'm not likely to be offered interferon on the NHS as long as there are no side-effects from hydroxy as that would be a much more expensive long term option. So I will continue as I am and hope for the best.