Ruxolitinib and constipation: I've been on... - MPN Voice

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Ruxolitinib and constipation

sbs_patient profile image
21 Replies

I've been on ruxolitinib for about eight months and have just realized that constipation is becoming a problem for me. Looking back, this may have started about four months ago but since I've been dealing with irritable bowel syndrome for more than 50 years, I was slow to recognize it as something new. I now see that constipation is listed among the side effects of ruxolitinib. Has anyone else experienced this side effect?

Thanks,

Stephen (age 79)

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21 Replies
Anouchka profile image
Anouchka

I too have noticed that but since I’ve basically suffered from constipation most of my life it took me a while to figure out that my regular natural laxatives were not working as efficiently…. I’m still working through finding ways to manage it more effectively.

sbs_patient profile image
sbs_patient in reply toAnouchka

The same thing happened to me. I usually can manage my frequent constipation with stool softeners and PEG powder (e.g. Miralax) but this time I needed to go to bisacodyl. I don't like using stimulant laxatives, but at my age I'm not as worried about dependence as I would have been decades ago.

Andrew8 profile image
Andrew8

Yes, seems to be an issue on ruxolitinib, but I have some prunes for breakfast every morning which seems to help.

sbs_patient profile image
sbs_patient in reply toAndrew8

Prunes don't seem to be effective for me. I have previously been able to manage my frequent constipation with stool softeners and osmotic laxatives (e.g. Miralax) but this time I had to reach for bisacodyl. I hope this won't be needed too often.

Anouchka profile image
Anouchka in reply toAndrew8

that’s where I’m going next. See whether it will be as effective as in the past…😆

sbs_patient profile image
sbs_patient in reply toAnouchka

It worked well for me today. Good luck!

MCW22 profile image
MCW22

I was already constipated before starting rux because I take codeine for my horrendous back pain caused by the spinal fractures I've had. I get lactulose on prescription which helps but I don't find it easy to take as it is rather sickly sweet and you have to be careful not to take too much or it causes tummy pain .

sbs_patient profile image
sbs_patient in reply toMCW22

Until now, I've been able to manage my frequent constipation with stool softeners and osmotic laxatives (e.g. Miralax). I've never used lactulose, which I believe is also classified as an osmotic laxative. This time I had to reach for bisacodyl, which is a stimulant laxative. I hope this won't be needed too often, though I'm less worried about laxative dependence than I would have been decades ago.

Anouchka profile image
Anouchka in reply tosbs_patient

Thanks for the Miralax tip. I’ll keep it in mind.

GarciaB profile image
GarciaB

I’ve had sone success with Miralax fiber laxative.

sbs_patient profile image
sbs_patient in reply toGarciaB

That usually works well with my pre-rux (IBS) constipation, but this time I had to reach for bisacodyl (Dulcolax).

GarciaB profile image
GarciaB in reply tosbs_patient

I went as far as colace, but it was only when I didn’t have a movement for two days

sbs_patient profile image
sbs_patient in reply toGarciaB

For me, two days barely counts as constipation. It's when you go more than a week that things get interesting.

GarciaB profile image
GarciaB in reply tosbs_patient

ouch

Plate profile image
Plate

What I have found with my gastroenterologist is this: AM 1 capful of Mirolax ( generic and cheaper Clear Lax) and in the evening before meals, 2 capsules of psyllium powder). I also throw in 3-4 dried plums in my morning oatmeal. You can adjust as needed.

I hope this helps!

sbs_patient profile image
sbs_patient

This is an interesting combination of fiber and osmotic laxative. I'll have to give it a try. Thanks!

EPguy profile image
EPguy

I'm just starting Rux, 1-1/2 weeks in. I was on IFN which gave me both mild constipation and its opposite. So far back to mild constipation.

Has your constipation been since starting Rux? Hoping some of the other members' ideas here help you out.

I see your prior posts that Rux was leading to anemia. Seems you have that part in control.

Interesting on your Dr's non-comment on pill splitting. I'm increasingly convinced it is medically ok (my opinion). But with each pill at ~$300 in the US for any size, they don't want us getting 2 for 1.

sbs_patient profile image
sbs_patient in reply toEPguy

I'm sorry to hear that IFN gave you gastrointestinal complications.

The constipation of irritable bowel syndrome (IBS) has been an issue for me throughout my adult life, more than 50 years now, so it wasn't immediately apparent that Rux was introducing something new. In hindsight, the constipation has been significantly worse for the past few months, and I just realized that it is a known side-effect of Rux. I usually deal with constipation with stool softeners and Miralax-style osmotic laxatives, but after a week I realized that it was time to reach for my bottle of bisacodyl, a stimulant laxative. That worked fine, and I'm hoping that bowel function will return to something more like normal (for me) for a while.

Taking 10 mg once a day of Rux seems to be fine; CBC numbers at or near normal, and no anemia. If I were told to take 5 mg twice a day, I would certainly split pills. I also suspect that Incyte is trying to maximize its income by discouraging pill-splitting.

EPguy profile image
EPguy in reply tosbs_patient

Sorry for incomplete info. My GI troubles were minor, I'm good with mild constipation vs the opposite. But I'll watch for any further GI troubles.

If you're interested you can read some of my severe adverse reactions in my post "Cope with Hope". Rux so far has been ok.

They do make a 5mg pill but esp if one is paying splitting a 10 is way better cost wise. Taken further a 20mg would give 4 doses. I'm not suggesting any such practice but it is interesting.

BlushNoisette profile image
BlushNoisette

Yes, constipation has been a problem for me too. I have been taking Ruxolitinib since 2015 and constipation was an issue almost from the start of treatment. I take 1 sachet of Movicol or Laxido dissolved in a glass of water every evening before going to bed and that works a treat. These powders just soften the stool and enable the bowel to work naturally, so it's much better than taking a conventional laxative everyday.

I do have a healthy diet ..... Mediterranean style with plenty of fruit and veg. I have museli and kefir for breakfast.

sbs_patient profile image
sbs_patient in reply toBlushNoisette

I started Ruxolitinib last August but since I've been dealing with bouts of constipation associated with irritable bowel syndrome (IBS) for more than 50 years now, it took me a few months to realize that what I was now experiencing was something new. I also use a macrogol-based laxative, as well as a stool softener, which has worked well until just now. I really hate to have to resort to a stimulant laxative (bisacodyl) but after a week it became necessary to do so. It worked well, and I'm hoping to be able to get along without it for a while.

My diet has always been a healthy one, but nonetheless IBS has always been in the background for me.

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