PegInterferon A or Anagrelide.

[Raphael_UK]

Hi, I’m MPL positive ET. Diagnosed 2 years ago and have been on Hydroxycarbamide 1g a day and 75 mg of dispersible aspirin. I have had a few horrible side effects with hydroxycarbamide, cramp in hands and legs and also cornea damage to my eyes (not definitely caused by hydroxycarbamide but have had this problem since I have been on hydroxycarbamide) Okay the question is the haematologist has offered to change my medication either to Anagrelide or PegInterferon A and if you change to Peg do I still need to take Aspirin. Has anyone changed from Hu to Peg. Thanks guys

[Paul123456]

I’m on Pegasys and no side effects. Plus a subset of Pegasys users achieve molecular remission (ie reduced Allele Burden if JAK2 + and improved marrow fibrosity).

The Hems who advocate Pegasys/INF believe it can slow progression. However there are other Hems who believe there is insufficient clinical data to support this and the possible side effects a concern (some people suffer flu like symptoms and can cause depression and autoimmune issues)

Assuming not prone to depression, my advice would always be try Pegasys. If you don’t get on with it, try something else.

It is very frustrating that there is no clear consensus re whether INF slows progression. I’m swayed by the Pegasys bulls but then I would be!

Re your reaction to HU, are you getting a good haematological response?

Re cramps, I think many of us suffer from this and not necessarily drug related. I stretch before bed. Our circulation not ideal so need to keep extremities warm, especially on cold nights. And dry eyes go with the territory, eyes drops and fish oil helpful

Best Paul

[Raphael_UK in reply to Paul123456]

That’s really helpful Paul, thanks for that. I’m not sure if my eye problems is caused by hu but neither is the hems. I’m not prone to depression so I think I’ll give it a go. Thanks for the advice. Raff

[SuET2017]

Hi Raffles

I have recently (about 4/5 weeks) changed to interferon from hydroxy as I was suffering lots of side effects (e.g. nausea, skin changes) I inject 3 times a week as it is not the pegalated. I have had the flu symptoms (of varying severity) after injecting (easy to do), but that is getting less and it is tolerable, and paracetamol helps. and other than that I seem to be tolerating it well. I don’t seem to be so fatigued either, but I have started taking cbd oil so it could be that?

Also, I was on anagrelide initially when I was first diagnosed, which I didn’t manage well at all - heart palpitations etc. It was not nice for me at all.

Hope it goes well whatever you decide.

[Raphael_UK in reply to SuET2017]

Thanks Sue, that’s really helpful. Raff

[Wyebird]

I’ve recently had anagrelide added to my 17 hu tablets a week. Early days. Angrelide can cause secondary MF but apparently the hu I take should stop that happening. Maybe you could try a combination. I’m on anagrelide because every time my hu increased so did my platelets.

[Raphael_UK in reply to Wyebird]

Thank you Raff

[Susana7]

Hi Raff, I have been on Pegasys for over 3 years, it was the first line treatment for me. It has been a success and normalised my bloods with minimal side effects. I only inject every 3 weeks now. I did have occasional eye problems with Pegasys, namely cotton wool spots. Cotton wool spots are commonly associated with diabetes and high blood pressure, but are also a possible side effect of interferon, particularly at high doses. I was taking a very low dose but still had the problem (I am also very myopic, maybe that puts me at a higher risk of eye problems). It was not a big problem as it turned out, just another thing to worry about. It started with me noticing a small weird shade in the periphery of my vision and that led to the diagnosis. It disappeared naturally after a few weeks but now I have checks every 6 months. Most time people don't notice they have this. Don't let this put your off Pegasys though - it has been amazing for me. Susana x

[Raphael_UK in reply to Susana7]

Thank you Susana that is really helpful. I am minded to try Pegasys, not sure how I will deal with injections but I’m sure I’ll be ok.