HI to all, I am from Zagreb, Croatia, I suffer from PV, and I am being treated with Hydroxycarbonide and venesections. Because of venesections, I feel quite tired and anemic because my iron is 4. I have just recovered a bit from the last venesection and now I have to do it again because my hematocrit is 0.45. What worries me is that my platelets are dropping and are currently low at 157. Do any of you have experience with platelet depletion and what that might mean? Thank you in advance for each response.
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cvita71
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Hello, I've never had venisections since starting on Hydroxycarbamide 4 years ago, but I've twice had ridiculously low ferritin and was cautiously given ferritin sulphate to raise ferritin on both occasions as I was struggling with fatigue. It's meant that the Hydroxycarbamide had to be increased with more blood tests but it raised the ferritin.When I have issues with my haematocrit being over 45, the Hydroxycarbamide is increased.
I can't help with your question regarding low platelets as I've never had that issue.
This is what is happening to me , 3 venesections last year to normalise my haematocrit then; started Hydroxycarbamide because of presenting with symptoms in particular intense burning in extremities. Now I’m just getting over covid and extremely fatigued . I believe that my ferritin is low but they do not want to give me iron . In the mean time I’ve also started a course of folate because that was low too . This however, was prescribed by my Gp the haematologist don’t know as yet . I was wondering if this could be interfering with my counts because of the way I’m feeling which is pretty poo at the moment. Im glad you posted on the matter because it’s given me some idea how they may deal with my case. Although, I don’t really look forward to an increase in hydroxy.
I was ok with HU for 3 years, it had control of my numbers. I now take 2 pills one day and 3 pills the other day. But now I don't have a feeling that controls my numbers. My Hematocrit is 0,45, my red blood count is 5,45, my white blood counts are 15,8 and Platelets
157. I had 3 venesections in December and January and I was feeling very exhausted and tired. And now I'll have to go for another one which makes me upset about it because I didn't recover from it last time yet.
Your GP shouldn't interfere with anything related to your PV treatment 😯 It's on my gp notes, direct from my haemotologist that I'm not to have iron!It will definitely mess with your blood counts, mainly your haematocrit will get high. You need to get a bloods check!
I feel lousy when I take ferritin, constant headaches more than anything.
I generally have an issue with burning/tingling in various places as well as generally feeling tired. constant
The Hydroxycarbamide keeps my bloods stable but does nothing to alleviate symptoms of my PV
I don’t think there is any communication on that one unfortunately!
I’m going to get in touch with them today I’m not waiting until next month . I have come to realise cakeface the need for advocacy . Thank you for your post
You've got to be pushy because unfortunately, it's just your blood results they're interested in.And I never consult with my GP about anything regarding my PV because they don't know enough about it!
As Cakeface mentions you can consider your dose of hydroxycarbamide; however, this does nor work for everyone to manage PV without venesection. There are other medications that work better for some (myself included). Jakavi (ruxolitinib) and the interferons (Besremi/Pegasys) may work better for you. Hydroxy did not work out for me I have done much better with the interferons. The same was true for the venesections . The side effects from the venesections were more bothersome than the PV symptoms.
WIshing you success on finding a more viable treatment plan.
I did talk to my hematologist about switching on Interferon-Pegasis, Because I can not get Besremi in Zagreb, only on the charge on the hospital, but there are no changes because of its price and it is not on the list of approved drugs in Croatia.
I'll try to ask my Hem to tray with Pegasis, but it all depends on Hem's decision and she wasn't so keen on changing anything last time.
I'll speak to her tomorrow, as you mention I'm quite exhausted from venesection.
I did use Pegasys until I switched to Besremi. For me it was more effective and much easier to tolerate than either hydroxycarbamide or venesections. I hope you have the chance to try a switch if that is what you want. Pegasys and hydroxycarbamide are both recognized as first-line treatment options for PV. In the absence of a clear contraindication, It is the patient's preference that drive the decision about which treatment option to choose.
Strange that your platelets are dropping. Usually with repeated venesections they rise. That's a concerning development and should be discussed with your hematologist. Perhaps your medication should be changed if the Hydroxycarbonide isn't controlling your hematocrit. With proper medication you should have less need for venesections, which will allow your ferritin to rise. Please don't be tempted to take iron supplements as that will increase the need for venesections. Hope you get it all sorted out soon.
Yes that is what wooryes me, that my PV is progresing. I ussually had platelets normaly around 300, after the venesuction they were going up around 500. We'll see what will hapen. Thanks fot the reply Orangeboykitty.
Not related entirely to your question but thought you might be interested. I was diagnosed with ET in 2012 and have been on HU every since. Then last summer my platelets suddenly dropped to the 120's. Short story, I had a repeat bone marrow and they have now said that not only has the ET not progressed but that I never had it in the first place and had been wrongly diagnosed and treated.
No. They've reviewed my original bone marrow biopsy from 2012 and I never had it. Had 10 years of HU without a need for it. But they don't know why my platelets were high and had been since 1998 or why they didn't drop before last year. They just said I definitely do not have a mpn.
Hi i was diagnosed in 2014 with pv, i have teied afew different things first was always just v sections then went on to interferron for just over 9 months injections then my platelets started to drop very quickly 79 was the lowest when i got a call to stop having interferon, which after just a couple of weeks they went back up but my symptoms came back very quick the itxhing sweating fatigue,i then went on to hydroxycarbamide which over the years i been on different doses and even stopped it for awhile, i now have not been on anything for a year and my levels are the best they have ever been, even the mpn nurse and my consultant can not believe how good they have been, my last checkup was two weeks ago they slowly have gone up but whatever is happening i just hope it carriers on. I hope you get your level stable soon, im not sure how old most of you are in here but i was 36 when diagnosed which is early as they told me, take care all of you
Hi,I have PV (v617f negative, exon 12 positive) and have been on pegasys for the last year. I had a series of venesections initially in December 2020 and then have had 4 in the 15 months since. My platelets are currently at 169 starting maybe in the 200s - (they went up with the venesections). So what I might observe is that your platelets might not be that bad considering they were in the normal range when you started treatment - and not as high like many with PV. The cytoreductive treatment is just doing its job and its indiscriminantly eliminating blood cells. While the diagnosis of PV cases is based primarily on red cells, most have elevated whites and platelets and at varying levels which actually helps with the cytoreductive treatment. My version (exon 12) has very high red cells but normal whites and platelets. The challenge for me has been to lower the reds but to keep the whites and platelets in range. The stuff with the iron is another matter related to the venesections and symptom causing. If you can get the correct drug at the proper dose, you hope that you can let iron recover and stay away from the venesections (and low iron). It seems to be a balancing act.
Thanks, Steve, I have high reds and whites, platelets were usually normal 300, only after venesections they were a little higher around 500. Maybe HU is lowering them too now. As you said, yes it is a balancing act.
Just finished a checkup with a hematologist. With some additional tests, I am going to start with Pegasis in two weeks if all goes well. I don't have to have a venesection this time, although my hematocrit is 0.45, due to low iron and anemia, this time we will skip it and hope to correct it with Pegasus soon. For starters, there will be 0.45mg of Pagasis and 1 pill of hydroxycarbamide remains until it is completely discontinued. And then checking numbers every two weeks until the dose is adjusted properly.
This gives me hope that Pegasis is going to be a little better for keeping my number under control. I hope everything will be ok and that I will tolerate the new drug well.
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