ET and venesections ???

[yarrowleaf]

I was diagnosed some 4 years ago with an ETjak2.

Since then I've been on Pegasys 45mg/fortnightly.

My problem is that I've got a lot of allergies because of the injections (or at least I suppose they are due to the injections, cause they are different from my other allergies).

My question is : Does anyone know if you can can have venesections instead of medicin when you have an ET ?? Like the PV patients have ?

I tried it myself before the doctors agreed in me having a disease in the blood, or rather , I donated blood and found out that it made me feel much better, but then I had to move to a place far from hospitals and I had to stop.

[Ebot]

The thing with venesections is they do a job that’s specific to the problems associated with PV namely they lower haematocrit levels. The issue is, that in trying to lower the haematocrit they then risk stimulating the production of platelets. Venesections are therefore not used for people with ET since it would just exacerbate the problems.

Having been diagnosed initially with ET and then been rediagnosed with PV I had both high platelets and high haematocrit which meant quite a balancing act when it came to treatment. In the end I started on Hydroxy which sent my platelet count tumbling and thankfully put an end to venesections.

I’d also be surprised if you were allowed to donate blood having been diagnosed with an MPN. No one wants dodgy blood!

[yarrowleaf in reply to Ebot]

I didn't know, Ebot, Ijust knew that I felt good about giving blood. The doctors said there was nothing wrong with me I think many have been through the same. 5- 10 years of trying to convince doctors about there being something radically wrong.

Later when I let blood, I did it at the laboratory at the UNI where I was studying, and the blood wasn't used.

[Ebot in reply to yarrowleaf]

The thing about venesections is they just bin the bag of blood in front of you! Utterly demoralising!!! Maybe chat this over with your haemo just to check there’s nothing else going on? Wishing you all the best.

[yarrowleaf in reply to Ebot]

Sorry don't understand your use of the word "demoralising" -- You mean wasteful, then I agree. But blood is difficult to handle. In old times it was used for many a purpose, some really good, but at hospitals there is generally a horrible waste of stuff/materials.

[Ebot in reply to yarrowleaf]

Demoralising as in ‘can’t you do something useful with the pint of blood you’ve just painfully extracted from me other than chuck it in the bin in front of my eyes?’!!! Apparently in the US they can clean and filter the blood and put it to good use but the machines are terribly expensive. However since the blood has been taken for therapeutic reasons and not donated voluntarily it can’t be used. Well, that’s what I was told.

(I guess wry humour doesn’t always travel well across the ether. 😁)

[yarrowleaf in reply to Ebot]

Don't worry-- Like you I use words for my own purpose, because they fits, taste good or are powerful -- I've been wondering the same (the USA thing)-- They use the "white blood" for the Jehova's Witnesses and such (maybe also for their white supremacy --hmmm ? :p)

Oki-- I'll take the chance and suggest some medical-free months and see what my dear young vampire sais. As it is now I live a no-life life. I'm not the slightest afraid of dying but If I shall live I want to LIVE-- as least the closest I can get !!

[JackLina in reply to Ebot]

In fact, if you are injecting and have done within 12 months, blood donations are not accepted. Even if you went to the dentist a month ago and had an injection to numb your mouth. I was having electrolosis going back years and I was not allowed to give blood.

[yarrowleaf in reply to JackLina]

I know But in 2004 I did not know, and the blood bank's test seemingly did not give any warnings to them.

[hunter5582]

Ebot is correct about venesections stimulating the prosuction of platelets. The correct procedure for ET is platelet pheresis . This typically only done in emergencies, not as routine treatment. It is curious that venesection makes you feel better. It would make me curious about a masked Polycythemia. What are your red and white cell counts like?

[yarrowleaf in reply to hunter5582]

Everything is quite normal except the blood platelets, which are rising if not treated.

[yarrowleaf]

I have now spoken with my doctor /consultant and as Ebot also stated, he would not let me use venesection (so I'm still wondering why it made me feel so good ).

Instead he suggested me dropping my Pegasys for a period of 6 weeks time and see what will happen.

Thanks for your response !!!