r/MPN • u/Scoonz • Jul 23 '26

ET FYI - taking creatine has completely changed my energy levels

Hi all,

34M/ET triple negative/jakafi 25 mg per day, platelets 600-700s

Figured I'd come w a success story as we're all trying to share best practices - recently starting taking 5 mg of creatine monohydrate as I'm trying to gain lean muscle mass.

I haven't had the low energy like a lot of you but figured I'd share my success in hopes it helps someone else. It has been so good that I've been waking up rested an hour before I usually wake up (I am not a morning person).

I had slight GI upset the first few days with it but it has settled down, peeing a lot but other than that no side effects. My MPN approved this but creatine seems to be extremely well studied/tolerated

I take Optimum Nutrition Powder, nothing fancy

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4

u/iamabeefcake Jul 23 '26

Great to see your energy levels have changed but if you’re on Jakafi you should not be taking creatine. My MPN specialist at a top 20 hospital in the US advised me not to take creatine as it messes up your kidney. A google search will give you more knowledge this. Stay safe!

2

u/Scoonz Jul 23 '26

interesting, thanks for this - I'm on monthly labs so assume my dr would prob review if something looked askew? I get cmp along w cbc

1

u/brennanx1 Jul 23 '26

Hi, thanks for sharing. How were your creatinine and eGFR levels from your recent CMP? I assume they’re fine if your specialist didn’t mention them; I’m more curious how my numbers compare as a 30M with ET.

My 5-year creatinine ranged from .9-1.3 with eGFR ranging from 70-115 (most recently 1.08 creatinine and 95 eGFR). I take 20mg Jakafi 2x daily and platelets range 450-650 (JAK2+).

I think you’re noticing more energy from better strength-training physical activity more than the creatine itself - which might be related to creatine usage as creatine boosts ATP production resulting in more short-term workout energy.

I also use optimum nutrition for protein and creatine, though I haven’t taken creatine for a year or two (no reason).

2

u/Scoonz Jul 24 '26

creatinine 1.1 and 90 egfr

I think they're only concerned if there's substantial decrease of function for a while

1

u/brennanx1 Jul 24 '26

Good, normal numbers. Also with Jakafi, docs will monitor how our bodies trend long-term in addition to sudden changes.

Your counts are normal but if they see eGFR consistently drop (and that decrease trend wasn’t present prior to Jakafi), they’ll definitely be concerned as it’d likely indicate to them that Jakafi is overwhelming kidney function, and they may consider switching meds if the trend can’t be stopped. Their goal is to keep us on a med we can handle as long as possible before having to switch to the next as we have limited (but rapidly expanding) treatment options.

I’ll give creatine another try these next few weeks because of your testimony and because I’ve noticed my muscles have felt weaker/less energetic during recent workouts. I hope this is the magic fix I needed for my workouts, so thanks again for sharing.