First Peg jab: Been off HU for 26 days. Went for... - MPN Voice

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First Peg jab

Cakeface profile image
12 Replies

Been off HU for 26 days. Went for my Peg lesson and administered jab myself under instruction from my SCN this afternoon. Straight forward. Here's hoping that some of my PV symptoms will soon start to alleviate🙏

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Cakeface profile image
Cakeface
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12 Replies
Barbiebreath profile image
Barbiebreath

How are you feeling? Hope you’re doing great.

Cakeface profile image
Cakeface in reply to Barbiebreath

It's only a little more than 3 hours since I administered it and other than a bit of a headache, so far, so good.Thanks for asking 😊

Vtr1000 profile image
Vtr1000 in reply to Cakeface

Hi Cakeface, I noticed further down the reply’s someone recommended more water. On med day I increased my water from 6 pints to 7 pints and this removed the headache issue.

Cakeface profile image
Cakeface in reply to Vtr1000

Thanks for the tip. I'll try that

Cakeface profile image
Cakeface in reply to Vtr1000

Thanks again for your tip about drinking extra water on meds day, it worked 👍

Vtr1000 profile image
Vtr1000 in reply to Cakeface

Glad it worked for you.

EPguy profile image
EPguy

Wishing you well in your new path.

I had same, did my 1st two doses at Dr office.

Did you go for 26 days with no HU or PEG? Did your counts hold up ok in that time? Usually they keep some HU thru the transition as was in my case for Bes.

I usually get a bit of dizzy just after the dose.

I saw your old comment on hair changing. My husband cuts my hair and has complained it is hard to work on since I started HU. Last haircut, since starting INF, he said it's still scratchy and more coarse. I've always had sort of curly so that hasn't changed. We'll see if it gets better with more time on INF.

Cakeface profile image
Cakeface in reply to EPguy

I'm certainly hoping my hair improves. I think the dry/frizziness part maybe due to the low iron? But the curls are like corkscrews.

26 days with nothing other than my blood thinner. My levels were all good at that point but I've been complaining for too long about fatigue and other PV will and blamed the HU. I think my consultant was just proving that the it's the PV and not HU! I was light headed and had a headache earlier but I often have both of those so I'm not sure if it was the Peg.

Bloods have been taken today so I assume if they're up significantly that the nurse will ring me tomorrow. I'm back in clinic in 4wks

Thank you for your reply😊

Bluetop profile image
Bluetop

So far, so good! Let us know how you continue. Good luck.

Cakeface profile image
Cakeface in reply to Bluetop

Thank you 😊

Hopetohelp profile image
Hopetohelp

Well done! Drink loads of water as can help headache and remember peg can be slow acting to kick in . Look forward to hearing how you get on

Cakeface profile image
Cakeface in reply to Hopetohelp

Thank you 😊The headache soon went and I didn't get any other symptoms. I do make sure that I drink plenty of water.

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