Does anyone know anything about haemolytic anaemia? (It's the result of red blood cells not functioning properly).
My situation is I've had ET for 6 years, hydroxy , then pegasys for the last 18 months, finally my platelets are nearly down to normal, but haemoglobin has been steadily falling, now at 96. I had a nose around on the web and found that late onset haemolytic anaemia can be caused by interferon Alfa after 3-38 months, tho a rare side effect. ( Study was on patients with leukaemia A. Andriani et al) Can anyone shed any light? I don't feel able to mention this to the haemo at the hospital. And I really want peg to work for me like other people 😏 Thanks everyone. Jo
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Joetcalr
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You are correct that Pegasys can result in anemia. PEG suppresses the production of multiple types of blood cells, including RBCs. This is why it is used to treat PV - to control erythrocytosis. It can also suppress the production of WBCs.
Suggest that you be sure to review this with a MPN Specialist (not a regular hematologist). This could be a simple matter of reviewing your treatment goal for controlling thrombocytosis and appropriate dose titration. Here is a link you may find of interest,
There is no reason to give up on your treatment plan just yet; however, you definitely want to review your status with your care team in a timely fashion. We each react differently to PEG and need to be followed carefully to keep the dosage correct. This is a key to success in managing MPNs.
Thanks Hunter, I've a blood test tomorrow, hoping the hb will be nearer normal. I hadn't heard of haemolytic before, i spose it's obvious really, to do with haem. Cheers Jo
There is more than one type of anemia. Interpreting what is going on will require more than looking at HGB numbers, Evaluation needs to include all of the measures of erythrocytes (and more). Here is a nice concise definition of the condition. "Hemolytic anemia is a disorder in which red blood cells are destroyed faster than they can be made. The destruction of red blood cells is called hemolysis."hopkinsmedicine.org/health/....
Your hematologist will be able to give you better guidance. Glad to hear that you are having another blood test tomorrow. We never want to base anything on a single lab read,
Please do let us know what you learn. We can all benefit from what you learn.
Hi Joe, haemolytic anemia is an autoimmune condition which is rarely related to Pegasys. As far as I know there’s no reason to blame Pegasys on the ground of a low haemoglobin level, but your haem will know better.
So sorry you are experiencing this. Strange isn’t it my haemoglobin went down to 93 before switching to peg. It’s hovering around 104 now disappointed it hasn’t gone higher but feel the difference x
Yes I was I tried taking all sorts but to make matters worse my ferritin was and still is over 700 so can’t have iron tablets. Did bare minimum. It’s still not good it’s in 10s now
Hello, just to share my experience with Peg Interferon Alpha 2 and I have ET Jak2+ for ten years and formats 8 years on Peg Interferon. The numbers are good. I think it is very individual, how we respond to treatment. Wishing you well.
I've got my blood results now: platelets up from 480 to 701, hb up from 96 to 104. These jumps are within 6 weeks, after I've moved onto 90 mg pegasys every 3 weeks instead of every 2 weeks. Seems like a difficult to manage seesaw. I'm going to ask the haematologist about being on half peg and half hydroxy, does anyone do that? How do you get on?
Lol I was sort of, whilst changing from Hu to Peg . I think it can be an option I take Peg every 10 days. Maybe you need to just alter your Peg. Good luck
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