Peg upped

[JeniMac]

Hi I started taken Peg 4tmg in October. My platelets are up again so I am have my peg upped to 90mg. When I took my first peg 45 I was ill for 2 days.Has anyone upped their dose and have they been okay. I'm hoping that I already have it in my system it will be okay. Don't fancy feeling ill again thanks hope your all well 💖

[hunter5582]

I did not experience much difference when I upped the dose of Besremi. I did choose to do it in smaller increments. Others using PEG have done the same thing, upping to 67.5 to give their body a chance to adjust. Suggest you review that option with your care team if you are concerned. (Note that the half-dose increment is a rough estimate).

[Hopetohelp]

I upped to 65 without problems but didn’t like 90. Got a bit short of breath so went back to 65. Haemo wanted me to stay on 90 but I asked to go back to 65 and said I was happy going slowly to get platelets down which they are doing nicely. Hope increase goes well with you

[Fremia7]

Hi Jenni,

I started 45 weekly Peg in September, and then went to 90 per fortnight 4 weeks ago, so have took two shots at 90mcg but they are spread out over fortnightly periods. I had side effects the first couple of 45s but (touch wood) haven’t noticed any side effects since the first couple of times and no difference at 90. As you say, I think it’s likely to be in my system now.

Hope it goes alright for you.

[JeniMac in reply to Fremia7]

Thanks. I took first 90 yesterday. Touch wood feel okay. Hope your well ❤️

[Wyebird]

hi it’s normal to be ill after taking peg. Every jab I took the side affects lessened. I would imagine you might experience it again if your dose is doubled. Hopefully it will eventually it will go away

[ainslie]

if in doubt smaller increases maybe wise

[Exeter21]

Jeni have you tried getting a phone appointment with Claire Harrison at Guys about this . I like you started October on 45 weekly & was awful. Got a phone appointment with Dr Harrison by emailing her. She took me off it to start 45 monthly. Haemotology did not understand anything other than reducing platelets & yet she being MPN expert more concerned on us slowly tolerating it . I am off it till Jan 👍. Julia Exeter Devon

[JeniMac in reply to Exeter21]

Thank you did you just email her direct. I like my haemotoligist but sometimes you need more expert advice thanks again hope your well ❤️

[Exeter21 in reply to JeniMac]

yes Jeni I did it direct as my Haemotology is lovely man but I was running into being an experimental Guinea pig on different drugs I felt were wrecking my life. I emailed her & if you get a problem ask your own dr at GP surgery to do so to ask her advice on levels of treatment. Since I did so my Haemotology seem happy for extra advice despite not before 👍. Julia It’s your life that matters & we cannot survive as zombies as everyone copes with these drugs differently & my body certainly doesn’t 👍

[Airslie]

I started with 45 then went to 60 and now on 75 with one hydrea of 500 per week. I’ve not had any side effects to speak of, thankfully. At the same time, every 2 weeks when I have my blood checked either platelets or Hematocrit is too high so I’ll probably get up to 90 soon. I had to have a phlebotomy last week. I appreciate that my doctor has moved me up slowly to avoid side effects and it’s working. I’m just praying the peg controls things soon. I started peg in August.

I hope you’re feeling well!

[JeniMac in reply to Airslie]

Thanks I'm not to bad. Hope you get sorted my platelets are terrible up and down. I'm in transition from ET to Myelofibrosis so need to see how fast it progresses keep healthy ❤️