Pegasys and increasingly low haemoglobin count

[PT99]

Hi

I’ve been on interferon for 5 years in total and pegasys for the last 2 or 3 years for my PV. I’ve been injecting 90mg weekly until July as both my platelets and haemoglobin have gradually been dropping. My frequency has therefore been changed to once every 2 weeks for the past month.

Platelets are up and down and hovering around 300 but haemoglobin has continually dropped and now stands at 119. Has anyone else experienced a steady drop in haemoglobin counts whilst on pegasys, after a similar period of time (5 years)? Did reducing the dosage reverse the situation?

Thanks in advance.

Pete

[hunter5582]

Pegasys is supposed to drop your erythrocyte numbers. That is why it is used to treat PV. Given what you describe, it sounds like a dose reduction is needed. Many of us injectly weekly at 45mcg. Note that Pegasys has a Half-life of 80h. Injecting weekly at a lower dose provides a more steady dose of interferon than a higher dose biweekly. 90mcg every other week is not the same as 45mcg weekly.

Lowering the dose should result in increasing your erythrocyte numbers regardless of how you do it. Note that platelets should also increase as well as leukocytes.

This is an issue you should review with your MPN care team. Suggest you ask about trying a weekly mower dose than dropping to 90mcg every other week. If the recommendation stay biweekly, I would ask why that approach rather than a weekly lower dose. The question is properly framed in terms of efficacy.

Wishing you all the best.

[PT99 in reply to hunter5582]

Thanks hunter. What you say about the dosage makes sense. I think they’re just experimenting at this stage but will ask about 45mcg weekly if the current fortnightly dose doesn’t work.

[Joetcalr]

Hi Pete, I was on Pegasys and my Hb went down to in the 80s, eventually I was given EPO. 119 won’t be considered low enough yet, below 90 seems to be the level at which is prescribed. All the best Jo

[PT99 in reply to Joetcalr]

Thanks Jo. Did your Hb recover after the EPO and did you carry on with the pegasys?

Thanks

Pete

[Joetcalr in reply to PT99]

Yes it felt miraculous. I’d already stopped interferon as I felt dreadful like it was killing me, however I didn’t realise about the Hb being so far below the normal range, so that was why I felt so weak.

I had 4 injections of EPO once a week, which brought it up to normal, a year later it’s still at 110 which is bang on the bottom of the normal range for a female (in the UK, in the US it’s expected to be higher - strange).

[Exeter21]

Have you got an MPN to advise on doseage . I am now around 450 platelets & reduced to 45 monthly on peg interferon which is keeping all other readings in range. Julia 👍

[PT99 in reply to Exeter21]

Thanks Julia. I think my consultant is experimenting at the moment by recommending injecting every 2 weeks. It maybe they drop the dosage at some point.

[Bobadog]

Hi there,

I only wonder if the 90mcg dose fortnightly is a cost issue with your particular NHS area?

You could perhaps raise this issues at your next appointment .

It saves the NHS issuing two vials (for 2 x 45mcg dose) instead of one.

I agree that 45 mcg weekly seems more sensible, due to the gradual absorption of the Peg.

I was on 45 mcg (UK based),

All the best,

Bobbie

[gvibes]

After about 2 years on pegasys, my dose has been reduced to 45 mcg every other week. My doc based this on low and decreasing hematocrit and Hema globin levels. I think he wanted to keep a weekly injections for a while longer for allele burden reduction, but reduced dose based on low hematocrit. He does not seem concerned about constant levels in my body but 45 may be a minimum dose. But everybody’s different. Good luck.