I have just had my third venesection due to PV w... - MPN Voice
I have just had my third venesection due to PV with about 8 weeks between the last two. Does the frequency normally settle into a pattern?
hi aime, no the venasection doesnt settle into a pattern. ive been relying on venasection for my pvr management for over 3 years and initially it was weekly then once the condition was sort of under control, its been 4=8 weekly depending on my blood results. it becomes tedious having regular blood testing, and i must admit now i dread getting the"id like to see you tomorrow " phone call- but for me its the easiest option for control, so stick with it if it works for you= cheers karteeka
hi, in my own experience i'm finding that since they got my hydroxy dosage right i don't need them. When i was 1st diagnosed in feb they were weekly for about 7 weeks and that was a pain, i started the hydroxy and went a fortnight then a month and my last one was in may, had a check up in August and didnt need one, next appt Dec, so thats my story, good luck and stay strong
Depends Aime - everyone's different; luckily they realised with my venesections quite quickly (4th session I think) that they were having the opposite effect to what should've been happening for my PV counts. They placed me on HU and within days/weeks all settled down to within 'acceptable' limits and I'm now currently on 3-monthly checks.
Hope things get sorted for you soon though, God bless.
Hi, initially bone marrow biopsy, I still remember where...OUCH! I then did the venesection weekly for about 6/8 weeks, & thereafter irregularly, when needed. Then 2 years later & after a flu jab needed hydroxy!!! Not sure if there's any reason (flu jab & platelets rise, any thoughts anybody???); I haven't needed a venesection for quite some time now so, hydroxy doing its job I guess. My platelets remain quite high but not unduly so...sometimes the rise in platelets problem has been due to a reaction to inflamation in other parts of the body...I have to say, my local Haemotology staff & hospital (Castle Hill, Hull), are great at managing my problem & keeping me relatively fit & well. So, a big up to Castle Hill & like the post above 'stay strong & do keep the faith', in yourself!
Hi Aime,
I was diagnosed with PV in February of last year, and I have been treated purely by venesection and aspirin since.
Initially, when I was diagnosed I had a venesection on eight consecutive days. It then went to three times a week for a month, then twice a week for a month and then that gradually went to once a month, then once every two months, but now I am unfortunately back to having one every six weeks.
I spoke to the haematologist last week and he said that it can take quite sometime for things to settle down, but also that I will eventually get to maybe one venesection every six months, although he couldn’t say when that would be. I guess we are all different and there is no same pattern for everyone.
I do get the fatigue, itches, breathlessness, fuzzy heads, etc. and I have a platelet count in the 800’s but generally I keep very positive and I feel good. I’m 41 and the haematologists are happy at this time to continue to treat me by venesection and aspirin only.
Good luck and try to keep positive.
It usually does settle down, if you have had 8 weeks between the last few venisections it sounds like your PV is not very active which is good and you should not need venisections very often. Most people need them weekly or fortnightly initially until there Hct comes down to 45 for men or 42 for women. Then as the venisections make you more iron deficent your MCV will come down. after a while most people have one every 3-4 months if not on meds. I have a small one of 150ml every month as opposed to a full one every 3-4 months as I find it easier to tolerate and keeps my counts more ven so I feel better.
Gday Aime, For me the pattern is that there is no pattern. Sometimes I will go for 4-5 months without a venesection and then will have one after an other monthly for a while. A few months ago I elected to have just 240ml removed because the HCT was just over the border. My haematologist suggested that maybe I shouldn't have bothered. So I am interested in that Optimistic has 150ml removed every month. That seems to make sense to me. I have much more trouble keeping my platelets under control..Regards Hackett
Thank you all for your replies. It is good to know that everyone's illness is different and not to worry if venesections don't run to a pattern.
I was diagnosed with PV about 4 years ago. Initially venesections were once a month. I still go very 3 months for a check up and now have venesections about 3 times a year. Hematologist is happy with this and when I said perhaps it had gone away she said no it wont go away it is being managed. Also on aspirin.
