When change in treatment?

[Alex9621]

I have had PV 3 years and initially had phlebotomy every 6 to 8 weeks then 3/4 times a year. Recently had one done every month last 3 months and feel like I may need another. I am also having a harder time giving the blood and it stops before they can get the full measure of it (drinking plenty of water before doing it.) What is the next step or the other things (even things I can do to help this) that can be done to help with this?

[Ebot]

There comes a point when it seems that venesections are not enough. The process for me, while never exactly fun stuff, was becoming quite unpleasant. In my case my platelets were also ridiculously high. I started on Hydroxy and all my numbers fell. It’s probably worth discussing your other options with your haem team. Can’t say that I was sorry to see the back of venesections. Wishing you well.

[Alex9621 in reply to Ebot]

Thank you for your response. I didn't even think of the numbers from other blood counts as that was the last thing I was thinking and mine are usually not bad!

[MPort]

I too had increasing problems with venesections, the frequency and difficulty of drawing blood. Plus platelets and whites climbing. It was decision time to have Pegasys. This didn't work immediately so venesections continued with less frequency. But now I am balanced on Pegasys. Whether Hydrea or Pegasys it will take a while but as Ebot says it is such a relief not to have venesections but there will be an initial period of both.

[Alex9621 in reply to MPort]

Thank you for your response. I don't know if I am there yet for further medication if given the choice as it feels as if I am advancing in the disease. I will be checking numbers though and discussing it with my doctor and it does give me hope possibly a new found freedom when you don't have to do phlebotomy. I have to drink at least 6 glasses of water a half hour before I get there and it takes 45 minutes to get the facility. I dread it!!

[Kari1961]

It was the same for me Alex9621 - I was needing venesection every 6 weeks. My veins had always been poor and hard to find, so they used to get the vascular access team in to scan for veins. Over the years it was becoming increasingly difficult to take sufficient blood from venesection as all of the 'good' veins in my arms were scarred and fragile.

I had my last attempt at venesection in October 2019 (they could only get 100mls) and then began taking Hydroxy in December 2019 when my Haem said 'No more to venesection' as they just weren't working. Since, I haven't needed one and my levels are fine. It's also amazing not to have bruised painful arms every 6 weeks.

I was initially dreading taking Hydroxy, now I think it's a wonder drug. I would definitely speak to your Haem.

[Alex9621 in reply to Kari1961]

Thank you for your response!! I kind wondered what they did if they couldn't hit the vain. I have had blood pressure cuff raped to my upper arm for pain and heat added to area but wondered what the next step would be. Will wait to see but will definitely have a discussion with my doctor about choices for now to help.

[hunter5582]

It sounds like phlebotomy-only may not be viable for you any longer. Perhaps it is time to seek medication options. PEGylated Interferon and hydroxyurea are considered to the the first tier options. Ruxolitinib is also on the list to consider depending on your symptom profile. Be sure to carefully research each option as each has its own risk/benefit profile.

I am currently on a phlebotomy-only protocol, which is still working. I would consider PEGylated Interferon to the the first choice when I need to resume meds. I would also consider Ruxolitinib. I am HU-intolerant, so I would never consider HU again. There is also some promising research emerging on the use of hepcidin mimetics as an alternative to venesection. Perhaps that will be another option in the near future.

If you have not already done so, consultation with a MPN-expert doc is a really good idea. Not all hematologists have the KSAs needed to treat MPNs optimally. Here is a list mpnforum.com/list-hem./ .

All the best to you.