I didn't have a great check-up yesterday - My hematocrit is refusing to budge after taking Hydroxycarbamide since the beginning of December. The only good news is that it hasn't risen. It now appears to be stuck at a stubborn .47. I'm PV Jak2+ so my hct is the one we need to lower. My wbc and platelets are at a normal level.
I'm now taking .500mg for 5 days & 1mg for two. My haem is reluctant to raise the dose, as at this doseage it makes me very tired. He's decided to keep me on Hydroxy for the time being and will see me again in 12 weeks.
He's suggested looking into getting a portacath inserted. Has anyone with bad veins ever gone done this route to acheive a successful venesection? I've done a bit of reading up on it, but each site I've visited gives conflicting advice i.e. Some say, you can have showers, others say no, just baths; some say they can remain in situ for 2 years only, others say 6.
I suppose that I now have to wait and keep my fingers crossed that a miracle happens and HU starts working over the next 3 months.
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Kari1961
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Short term, the main thing, is getting your haematocrit numbers down, especially as you have had a stroke in the past. The increased dose of hydroxy should hopefully do just that. However, the risk is a decrease in all your blood counts. Not ideal!
Longer term, maybe your haematologist should be offering you Pegasys.
Hi Kari. I can't offer any advice as i'm et jak2 but you have my utmost sympathy regarding the vein situation. My 'record' as yet is 8 'stabbings' to draw blood! My poor daughter unfortunately takes after me and when she had a caesarean delivery with my Granddaughter even she broke my record with 10! I kid you not. It must run in families,my mum was the same! Atb,tina🤗
I have ET Jak2, so no venesections. So, sorry, don’t know how to advise you. I do know I have poor veins as well. Sometimes, it takes three people to attempt to get blood from me. I’ve also had to change my arm because my other one just wasn’t working anymore during my blood tests. I found drinking water before your appointment helps the blood flow better. Maybe a second opinion would help as far as changing the meds.
I’m so sorry this hasn’t worked for you Kari. I don’t know, but I wonder if any other meds work better on hct? If you increase the Hydroxy too much you may find your platelets go too low. I’m sure you will have discussed all the options but maybe another opinion would be helpful? I know you are happy with your heam but a few years ago Prof Harrison recommended Jason Coppell to me. I never changed as I was happy with my heam but it might be worth a try.
What was your hct before the Hydroxy? If it has lowered a little it may come down further by the time of your next appointment.
Hi Judy, before Hydroxy it varied between .48 and .50 so it has lowered by a miniscule amount, and the best news ever, that it hasn't risen.
I came across Jason Coppell's name on the RD&E website and I believe my Heam (Paul Kerr) is going to speak to him about me.
I've already decided that I do not want a Portacath - I came across a YouTube video today from someone who has PV, had a Portacath fitted and ended up with a Pulmonary Embolism. I'm all for trying 'anything' BUT if it means potentially causing a fatal outcome I draw the line and say no.
My Dad died at aged 48 from an Embolism, so, at this moment I'd prefer to take my chances with meds that I can stop taking 'IF' they cause too many issues.
I'll continue keeping my fingers crossed that Hydroxy will start working.
Well you certainly don’t want a PE. If your hct doesn’t rise any further I guess 47 isn’t too bad. Mine has often been at that level and I don’t seem to get the problems that others do at that level. I’ve been on the same dose as you in the past but more to lower the platelets rather than hct, I’ve ways had a venesection for high hct.
Good luck, assume you drink loads of water as that helps.
I'm hoping that it stays put at .47 (or lowers) and yes, I drink plenty of water throughout the day. I keep a 2 litre container in my fridge plus have a couple mugs of tea. So I'm always well hydrated. xx
I assume that you've explored things like drinking lots of water 2 hours before venesection, keeping warm and using warm pads to keep the veins open.
Drawing from other locations may also be possible by removing more clothes. Using a different sized needle (some haem units are very restricted in what kit they have available) and changing the "operator" are also worth exploring. Some nurses and doctors are much better than others at the task especially where the veins are problematic.
We've tried everything - Catheters, having the vascular scan team in, plus all of the basics you've mentioned. I've even tried lifting weights to try to get them to pop to the surface like body builders do, and nothing has worked. My veins are very fine, really 'kinky' and burried deep... I also think that over the years the few 'good' veins I had have become really scarred and tend to explode when a needle is inserted, which is interesting to watch on the scan.
Yes, I have a portacath because of lousy veins. It is a godsend. It is completely under the skin so showering, swimming etc are not a problem. As long as it is always accessed with a sterile process it should last for years. If not being used it should be flushed once a month. I have had mine for nearly 8 years. I’m happy to answer any questions you might have about it
Yes, I have a portacath for lousy veins. It is completely under the skin so no problem with swimming, showering etc. As long as it is accessed using sterile procedure and is regularly flushed if not in use it is very safe. I have had mine for nearly 8 years and it is still good. I’m happy to answer any questions you might have so feel free to ask. Best wishes, Jan
I hope there are some things in the article that you can discuss with your haem team.
As to hydroxyurea you might find that the HCT might improve with time. If it doesn't you might find other drugs are better for you. My wife is on Ruxolitinib and it has changed her life ( and mine).
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Have I got PV?
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