Post Peg side effects

[RazB]

Hi, I’ve posted on here a few times re Hydroxy V Peg, then posted after first & second Peg doses. You have all been really supportive and helpful. Thank you. I was advised by Prof Harrison to come off Peg after 2nd dose as effects were so bad, which I happily did. So my last dose was about 7 weeks ago. It took weeks for side effects to lessen and I still feel exhausted a lot of the time, am having to rest daily and weirdly am experiencing strange tingling in legs and feet that I’ve never had before. When my platelet count was very high years ago I had sharp tingling/itching inside my limbs but this new feeling is quite different. Its almost as if I can feel the blood moving around in my legs and feet. It’s fairly continuous. Does anyone else have this?!

[Joetcalr]

That’s a very good description of the sensation that I was having when I was first diagnosed, my platelets were 1600+ at that point. I only noticed it at night.

[ainslie]

when I came off Peg, it took 3 months for the increased itching from Peg to settle to pre Peg level, you may settle but if it were me I would check with Clair Harrison, your lucky to have her as your Haem.

[MAP44]

Hope you feel good soon! Are you trying any other meds ??

[RazB in reply to MAP44]

No, just sticking with Hydroxy atm. X