Hi all...reaching out to those of you a on Jakafi and are experiencing constipation. I'm actually doing really well on it so far, but the constipation is awful! I've eliminated most refined products from my diet, exercise regularly, drink tons of water and have purchased OTC products to help...Stoll softeners, natural laxatives, eat prunes...I'm so disgusted and probably might explode!Any helpful advice out there?
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Hi Kitty - I had same reaction and looked for over the counter help, but got nowhere. Mind you, constipation has been a bugbear throughout my life and the only method that finally helped is taking a Tbsp of Vit C powder diluted in hot water with a splash of cold first thing in the morning. Ugh 😝!! I’ve reverted back to that and am now way more regular.
This forum also mentioned Miralax as a remedy, that you might want to consider - or its equivalent wherever you are.
Good luck - hope you find something that helps you. Be well
Try Meta-Mucil I'm not on this drug but have very twisted colon so I mix this with water and drink daily. Has made all the difference in the world. It's natural fiber. Good luck! Kerry
I had the same problem on hydroxyurea. It got crazy-bad when I was also taking diltiazem. My doc ordered senna, docusate, and Miralax all at the same time. YIKES! 😳
It was better when I discontinued the diltiazem, but still had to take daily Miralax when on HU. I also took a daily probiotic and made sure to eat fruit every morning. Also included prebiotics and probiotics in diet. On rare occasions I would make a cup of Smooth Move tea, which has senna leaves in it. Note that taking daily senna is not a good idea.
My care team was aware of what was going on and what i was taking. Suggest you consult with your care team for suggestions about what will help.
Jakafi is also working well for me; I've been taking it for almost a year now. As for constipation, it seems to come and go for me. Since I've been dealing with irritable bowel syndrome for more than 50 years, periods of constipation are a familiar occurrence. However, Jakafi seems to be making these periods more intense. Right now, I'm managing with docusate (stool softener) and PEG (Miralax). Bisacodyl is reserved for extreme situations.. So far, it's been manageable, but I never know what the next week or month will bring. I'm sorry to hear that you've been having such trouble. Good luck in dealing with it!!
Have been on Jakavi for about 6 years now. I have experienced some constipation most of my life. The last few years I settled into using Restoralax which had worked wonders for me. Prior to having surgery for prolapsed bowel I started taking Restoralax daily, not wanting problems after surgery. It helped immensely. I eventually got myself on regime of every other night I would take faithfully. Best of luck finding what works for you. Very uncomfortable I know.
Hello - I was on Jakafi for one year and experienced constant constipation. My new oncologist from Mayo clinic referred to Jakafi as "poison". He slowly removed me from Jakafi over a four month period. Constipation is slowly declining. If my spleen starts to enlarge again, there are two new drugs that have recently been approved that he says are much better. I have also been on Hydroxyurea for five years. Hydroxyurea also seems to cause constipation. Good luck
I’ve never heard Jakafi being referred to as poison. Similarly could you tell us which two drugs that have been approved that are in his opinion much better?
Yes, that is the exact word he used to express his dislike for Jakafi. He also stated that he wasn't worried about my platelets being high as long as they were "slippery". He put me on Plavix before bed and baby asprin in the morning. I also take 1500 mg of HU daily. If I need a JAK2 inhibitor therapy again he will go with either Momelotmib or Pacritnib. I have now been off of Jakafi for six weeks. I feel so much better and my wife is amazed at my improvement.
the main thing is you are feeling much better, no drug agrees with everyone although most dont have much or any probs with Rux, its been great for me so far. I hope your doc is right that these other drugs he mentioned are better, I am a twinge sceptical, from what I have read/heard I have never seen anything to say they are any better never mind much better, different yes but thats not the same thing. Wishing you good health in the meantime.
I was also wondering why the Dr referred to RUX as "poison"? Are there any prescription meds that don't have side effects? I believe it's finding one that works and is well-tolerated.Unfortunately,
HU was not that drug and was far more "poisonous " to me as not well-tolerated. I wish it had been as its helped so many.
Sorry for your problem. I am 76, 3 years into the PV journey, not on jakafi and still taking HU but experience both constipation and occasional diarrhea. My approach is "less is more" so after trying a lot of stool softeners, laxatives etc., I started adding half bowl of All Bran Flakes to my morning cereal and that has worked perfectly for me. Hope you find a solution. Good luck
I had the same problem when I started Jakaf and I take MiraLAX and it works for me
Thanks everyone for your quick responses. I have everything in my arsenal that you've mentioned...Miralax Metamucil, prunes. Probiotics and other natural supplements for digestive aid, as well as eating Apples by the dozen! Just not back to my "old" self. Thinking that I won't be while on this drug!
So not related to my post about constipation and Jakafi...Saturday, I experienced a "cytokine storm" unlike any I've experienced before! I was rereading some older posts on this site and one response from Hunter to someone reaching out after recently being diagnosed with ET, really affected me! Hunter mentioned in this post that those of us who have been living with these MPNs sometime refer to them as cancers with a little c and not a big C. Also, because of the Jak 1 and2 pathways, we have an inflammatory disease. I will admit the inflammation has been the most difficult for me. This leads me to the Cytokine Storm that i experienced over the weekend...
If on Jakafi, which I am, why would I have such an inflammatory attack?! Can't seem to find an answer? Nothing changed in my diet and by the next day I was feeling fine. 😕 Confused...
I haven’t had what some may is constipation but like to ensure bowels act 2/3 times a day so I keep it that way by doing the following, it’s all natural , no drugs. I try to use organic.
I take two psyllium husk capsules between meals with a cup of water, I take two a day, it needs plenty water or can make constipation worse. I take 4 Oxytech (Dulwich Health UK or Nutrisearch US) at night, it’s a mixture of Vit C and magnesium. Also nut paste, I half fill my nutrition-bullet with mixed nuts and half with water, spin to make soft paste/soup. Put in fridge overnight and eat over next two days at meals. Nuts absorb water so can dehydrate so ensure enough water in container before mixing. Nuts are good for us for many reasons, assuming no allergies of course.
I also eat veg and whole grains at all meals (with meat and eggs etc), exercise and moving throughout the day also helps.
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