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.

I need venesection to remove the iron. Has anyone else experienced this?

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.

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.

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

I've had a venesection to date & I'm due another this week but I'm physically fit & feeling I should attempt a more natural course of action in the short term to see if there's a way to manage my condition organically.

I still go to Hospital every 4 weeks and need a venesection and one aspirin a day but nothing else has changed. I have had this condition for around 13 years now and thanks goodness I am doing ok.

I have fatty liver cirrhosis .i was diagnosed 3 years ago .i have haemochromatosis been having venesection. i been suffering with severe depression and anxiety.Panic attacks while trying to get to sleep and during asleep. im really suffering from lack off salt and sugar.

Also I had venesection too. Now the injection is not available in Australia. I am supposed to take one next week and subsequent to that do the blood test and consult the specialist in two weeks time. I checked today too and it is not available in Australia. It is not an issue.

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 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.

at this format but would really appreciate any advice on my situation as doctors don't seem able to give much support beyond blood tests and scans every 6 months so after 4 years of GP visits and various ailments symptoms and tests i was diagnosed with hemachromatosis July 2023 started on blood venesection

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

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.

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