Vonjo (pacritinib) and diarrhea: Do probiotics help?

Posted by snakebite @snakebite, May 26 10:22pm

I've been taking Vonjo for a long time now and it has done an excellent job controlling my spleen size. The single major issue that has been a constant is the never ending diarrhea. Has anyone tried using a probiotic while taking Vonjo, and has it helped?

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@snakebite, I'm tagging @lschmeit and @cupofsunshine, who may have experience with Vonjo (pacritinib) to share regarding diarrhea and probiotics. Did you try probiotics or talk to your doctor about it?

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hello. yes. Fruit/green smoothies made with kefir, bananas and frozen fruit, fresh kale, broccoli and spinach. Kombucha really helped me. But I was advised (quite thoroughly in the beginning) to take anti-diarrheas which i never used or needed. If you can control your gut activity and make an extreme game plan with your diet, your diarrhea will go away.

I thought you would like to know that i didn't have problems with diarrhea (due to Vonjo) the entire first year of taking it. And, today (after a year a half on it) I still don't have problems. Because I was also on Mertazapine (for anxiety) last year...caused me to eat alot and keep my gut full. The vonjo forced me to strip down my entire diet... no sugar, not a drop of caffeine, absolutely no sugar, no chocolate (but im forced to break this rule). I have some videos on facebook which i can post on YouTube of my extra powerful plant based protein smoothies. I was taking them every day through the hard times. Hard times can be described as my spleen shrank (really really fast in the beginning of taking vonjo- which caused my appetite to change ALOT-went up and down)...there were times when i had intermittent diarrhea or constipation. But then I used prunes, prune juice and LOTS OF WATER... LOTS of protein. as much as you can get down. Sometimes I ate baby food.

Pretty much, the Vonjo dictated my entire diet. Ive never even vomitted once. And now my spleen is enlarging again...but at least its not uncomfortable and I've found a way to live a more balanced life.
Heres to VONJO!!! ☀️🌻

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COS, Thank you for your response. It was very helpful to me. It sounds like you and I have had very similar experiences. My diarrhea for the first year+ on Vonjo was not too bad... more of an annoyance. I did a long session of also taking Dacogen along with the Vonjo. I reached a point where the Dacogen was doing more harm than good, so it was stopped. After stopping, but continuing with the Vonjo, my CBC went up very rapidly, to a low normal state. I felt better than I had in many years... however, that was when the Diarrhea got much worse. So much so that I was becoming Home bound because I just couldn't take a chance of getting caught out away from the toilet. I've started taking Lomotil (Diphenoxylate-Atropine 2.5). It has not stopped the Diarrhea, but has helped a great deal. I am trying to do the natural thing using Bananas, broccoli etc... even Kimchi. They help, but I would like to have even more relief if possible. THAT is why I was asking about the Pre and Probiotics that seem to be available by the dozens, and range in price from this to that. I may just pick one and give it a try. Again, thank you for your response. I wish you the very best in your situation.

Snakebite

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@colleenyoung

@snakebite, I'm tagging @lschmeit and @cupofsunshine, who may have experience with Vonjo (pacritinib) to share regarding diarrhea and probiotics. Did you try probiotics or talk to your doctor about it?

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Many otc probiotics are ineffective. Talk to a real nutritionist, Cornell has a certificate program, see if they have a graduate in your neck of the woods.

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