Intestinal issues with Ruxolitinib/Jakafi

[sbs_patient]

I'm now in my third month on Ruxolitinib/Jakafi; blood numbers are looking good so far. However, I've been experiencing some intestinal issues. I've been dealing with irritable bowel syndrome (IBS) for more than 50 years, and I'm starting to think that this medication may be increasing the intensity of the IBS. The listed side effects include both diarrhea and constipation, which could fit with my experience. Specifically, the medication seems to be affecting intestinal motility (in both directions, which is interesting). So far it's not more than annoying - an exacerbation of what I've been dealing with for many decades. Does anyone have any comments or experiences that could shed some light on this matter?

Thanks, Stephen

[socrates_8]

Hi Stephen...

I find that dried apricots works well for me, in moderation of course...

Best wishes

Steve

(Sydney)

[sbs_patient in reply to socrates_8]

Yes, dried apricots tend to help with this. Unfortunately, it's hard to eat only a few

[Barney50]

I have been on Rux for PV and Stage 1 MF for almost 2 and a half years. Yes, Rux does cause various intestinal issues as you have stated. Rux affects your joints and muscles also. Your intestinal system involves many intricate muscle responses. I find that water is critical for anyone on Rux. Water is necessary especially for your digestive system under any circumstances. When things are bad for me on any particular day, I avoid any processed foods (I stay away from processed food as much as possible any way.) I also drink an organic ginger ale mixed with about 24 oz of water and drink it throughout the day. This works for me and addresses any nausea that occurs from the Rux. I also do abdominal yoga moves that keep my muscles moving. This also helps with bloating. Rux works well for me so the minor side effects are worth my quality of life.

I know Besremi is getting a lot of good results but I have not been approved - I am almost 73.

[ainslie in reply to Barney50]

Barney

You wrote Rux affects muscles and joints, I have not read or heard of that in the 5 years I have been on Rux, could I ask you where that info came from,thanks

[socrates_8 in reply to ainslie]

Hey Ainslie...

I also have huge muscle, joint & bone pain issues... However, I had them before I started taking Rux' hence, they may indeed be more likely symptoms of my illness which is currently defined as: Post ET / MF...

Best wishes all...

Steve

[Barney50 in reply to ainslie]

The insert developed by Incyte - the company behind Rux - that comes with my prescription lists joint pain, muscle spasms and musculoskeletal side effects. The joint pain comes from several effects - high blood viscosity, overaction of the bone marrow and micro bleeds around the joints. Muscles are affected by blood viscosity, low oxygen, micro bleeds and swelling. The insert I get is approximately 4 pages of information, dosage and side effects as well as symptom warnings.

[ainslie in reply to Barney50]

thanks Barney

I will look out the leaflet, strange I have never heard that to date

[ainslie in reply to Barney50]

I’ve just read the leaflet we get in the UK for Rux and it doesn’t mention any joint or muscle issues, you mentioned that some of the muscle and joint pains are caused by viscosity and over action of the bone marrow, low oxygen etc. I am no expert but if we are on the correct dose of Rux we should have normal viscosity and no overaction in the bone marrow, and for PV we should have normal oxygen unless if anaemia with MF.

Did you read the above ie re viscosity and overaction of BM in the leaflet.

I will try and find the US leaflet online or can you post it

Thanks for input

[sbs_patient in reply to Barney50]

My issue has always been intestinal motility; if slow, constipation; if fast, diarrhea. It seems reasonable that muscle responses would be involved. Until now, a motility phase lasted for weeks or even months. Since taking Ruxolitinib, the phases seem to change every few days. Annoying, but so far not serious.

[ainslie]

I think Rux can cause constipation , I find taking some fibre supplements and a product in UK called Oxytech, also good fibre diet including nut paste seems to keep everything normal.

[sbs_patient in reply to ainslie]

Thanks for the advice. So far, the intestinal issues have been annoying but manageable.

[Itch]

hello Stephen, I was also diagnosed with IBS over twenty years ago. I decided to eliminate gluten from my diet (without medical guidance); it has worked wonders for me, as long as I adhere strictly. Maybe worth trying ? Good Luck 🤞

[sbs_patient]

Thanks for your reply. I'm very familiar with gluten-free diets, since my wife was diagnosed with celiac disease more than 40 years ago, back when it was still regarded as rare. She was very ill back then and over then years has been strict about keeping free of gluten. My diet can be regarded as low-gluten, since rice and corn are the mainstays of our carbohydrate consumption.

[K-itty]

I just started on Jakafi and so far I've responded well to it...with the exception of extreme constipation! I've really cut back on all refined products in my diet, drink tons of water, increased exercise and utilize a natural stool softener. They all help to some extent, but it continues to present a problem. RUX has also helped with inflammation in my body, i.e. joint pain. I notice that some here have responded that it has actually increased their joint pain? It's also increased my energy, but that being said, I'm on a very small dosage and each of us are unique on how we respond to the Rxs we have available for treatment. I did not respond well to HU, but got to the point where I needed to do something to lower platelets. Good luck! I wish you success.