Experiences with

Venesection

hi all I have PV and the team has been checking my hematocrit regularly for venesection. I have not needed a venesection for 18 months as it has been below 0.45. However, I noticed that my WBC has been creeping up. It is now 14.3. My specialist has advised 15 to be the alert level for treatment.

However , after the venesection this week the thigh and leg ache and pain has completely gone at least so far . Also the imbalance occasionally I faced while walking after treatment commenced also gone so far after the venesection .

after 9years of trips to hospital and venesection s I’ve been told today that I do not have Cirrhosis or fatty liver disease. Hurrah. Don’t know who will understand this news.

I have been treated for the last ten years with venesection only so am a little nervous about starting a new medication and getting possible side effects.

I seem to have stabilised my haematocrit in the mid 0.4s with a monthly venesection and no meds yet.

So now I have started 10mg ,twice a day of Ruxolitinib plus continuing 90 peginterferon once a fortnight. with a venesection booked for tomorrow. I would be grateful to hear from anybody with similar experience. Thank you, and best wishes to all.

CBC results from today show a sustained response from the venesection I had done on March 26. HCT = 43.3% LYMPH=1.17 and NEUT=0.59 are still a bit low but in the acceptable range. It seems that my best plan is top stay at 175mcg Besremi with a venesection about every 12 months.

❣️ Next step, see if higher dose is having any effect by end July, have another venesection if needed (I have PV with high platelets too) and maybe add hydroxy to the mix for a while. ❣️ Otherwise change of drug altogether. Under Guys.

I understand that as (currently) incurable disorders PV and ET require long term management via venesection, anti-platelet and cytoreductive drugs.

I’m small, so Consultant Haematologist says I shouldn't need a venesection too often. I’m given a “squeeze ball” each time.

I followed up on my planned venesection on March 26. I had a CBC done today. the results look good. HCT=42.1%, down from 47.3%. The next planned CBC is April 26. We will see how things look then. NEUT came back up a bit, now at 1.30. So low, but acceptable level of neutropenia.

I had venesection few times and subsequent blood tests were done too. About a month back specialist recommended me to take Pegasus 45 microgram/.5 mL each for two weeks and change to 90 microgram/.5mL for every two weeks. I have now taken the first 90microgram dosage for the first time.

he has Iron Overload which will soon be managed by venesection. The specialist nurses don’t seem to have any solution for managing oedema in someone who can’t take diuretics. His disease in itself tends to limit movement and this swelling has made things worse.

first JAK2 Bloods test my results were 44.65 then a year later around July/Aug 23 had another JAK2 blood test and it had increased to 56.45 hence my decision to start Pegasus in Aug 23 first 45mcg forthnighty then few month ago increased to 45mcg weekly as HCT was 42.9 my target is 43 and I had a venesection

My recent Jak 2 allele burden blood test shown an increase from 20.83 % at diagnosis to 35.09% my bloods especially the HC is high and I keep needing venesection every 6 weeks .

The haemochromotosis and alcohol combination has caused such significant damage and now he is almost 2 years abstinent and having regular venesection treatments all that is left to do is weight.

No serious side effects (other than itching), good platelet control, less HCT, no venesection until summer when had to have 2 partial to keep HCT below 42 (I'm female). I also have been hypothyroid for over a decade and well controlled on fairly low dose Levothyroxine.

might anyone please have any experience of a venesection at home for a PRV patient unable to access usual clinic in London due to mobility problems (unrelated to PRV) and if so, what company provided this? very many thanks.

Hi Everybody I have hemochromatosis and my ferritin is now 13 but no venesection for 2 years. I have had heart twinges and chronic constipation. I have been diagnosed with second AV block with pauses up to 7.13 seconds by my 24 hr holter monitor.

I have hemochromatosis and ferritin dropped to 14 with no venesection for over 2 years. I have now been listed for an urgent pace maker but am worried how a pace maker will deal with 7.13 second pause please? Many thanks for any information Gladys73