UTI as a side effect of myelofibrosis treatment ... - MPN Voice

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UTI as a side effect of myelofibrosis treatment with Ruxolitinib

lina-rowland1 profile image
19 Replies

Hello everyone! Perhaps someone has experienced such a side effect during treatment (in my case Ruxolitinib), as UTI.

My symptoms resemble cystitis with frequent urges and pain afterwards. The tests I took did not detect any bacteria, but the tests should be taken several times for an accurate result. I wonder if Ruxolitinib can cause such problems, maybe its composition irritate the walls of the bladder and urinary tract or cause an increased uric acid levels? Urologists are usually unfamiliar with this drug (Rux). I take Furamag (Furazidin) to cope with the symptoms. I would be grateful to know about the experience of those who have encountered such a problem🙏 I have been on Rux for 5 years now, another thing that I’ve noticed during that time is a skin rash (hives) - slightly red or flesh-colored, raised, small bumps. A couple of bumps appear from time to time on my body. Sorry for mixing all the information in one question

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lina-rowland1
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19 Replies
Richinspirit profile image
Richinspirit

May I ask - you male or female?

lina-rowland1 profile image
lina-rowland1 in reply toRichinspirit

female

liarose profile image
liarose

I do get regular urine infections while on run

lina-rowland1 profile image
lina-rowland1 in reply toliarose

I hope you’ll find ways to deal with that problem🙏

Ebot profile image
Ebot

Hi. Yes, Rux is known to increase the risk of certain infections including UTIs. If you’re getting frequent infections you might want to discuss this with your MPN team / GP and take some on going preventative / prophylactic treatment. Wishing you all the best.

lina-rowland1 profile image
lina-rowland1 in reply toEbot

Thank you!🫶🏻

Ashgracie profile image
Ashgracie in reply toEbot

I’m on Hydroxyurea and having same issues.

Ebot profile image
Ebot in reply toAshgracie

It’s worth a chat with your GP / gynae. Repeat UTIs are not good news as well as affecting your quality of life. If you’re female then adding things like Vagifem into the mix can help alleviate risks / discomfort. Hope you get resolution.

artydutch profile image
artydutch

I got an infection early on in using Rux, that needed 2 courses of antibiotics biotics.

lina-rowland1 profile image
lina-rowland1 in reply toartydutch

Thank you for sharing your experience. I hope the problem won’t bother you again🙏

Cazbolac profile image
Cazbolac

Hello. I was on Rux for nearly 10 years for Primary Myelofibrosis. I suffered so many UTIs and was frequently having tests and visiting GP. A lot of the time they could not detect infection but gave me antibiotics anyway. I always needed at least 7 day course to help ease the symptoms. I was always told Rux could cause urinary problems. I am on Momelotidine now and also oestrogen pessary and so far no more UTIs.I wise you good luck getting this sorted.

lina-rowland1 profile image
lina-rowland1 in reply toCazbolac

Thank you so much for your answer! Glad to hear that you no longer worry about UTI🙏 If possible, please share why you were transferred to another drug (I don't know about it). Maybe the reason was UTI or the effectiveness of the treatment

Cazbolac profile image
Cazbolac in reply tolina-rowland1

Sadly Rux stopped managing my MF effectively and I have moved into high risk group for leukaemia. So the new drug is being tried while I have to decide on my future options,possible look into stem cell transplant.

lina-rowland1 profile image
lina-rowland1 in reply toCazbolac

I sincerely wish you success in your treatment!🙏 Thank you so much again for telling me about your situation in such detail, it is very important for me because I also do not know what awaits me in the future

Cazbolac profile image
Cazbolac in reply tolina-rowland1

I wish you all the best 😊

Cazbolac profile image
Cazbolac

Hello. I was on Rux for nearly 10 years for Primary Myelofibrosis. I suffered so many UTIs and was frequently having tests and visiting GP. A lot of the time they could not detect infection but gave me antibiotics anyway. I always needed at least 7 day course to help ease the symptoms. I was always told Rux could cause urinary problems. I am on Momelotidine now and also oestrogen pessary and so far no more UTIs.I wise you good luck getting this sorted.

Paul123456 profile image
Paul123456 in reply toCazbolac

Can I please ask what your dosage level was?

Hope the new drug is effective

Best Paul

soomoo profile image
soomoo

Hi, I've been on rux fir 5 years. I too suffer from uti's, urgency and sensitive bladder. Got to keep water intake up. I take high dose cranberry capsules too. Bicarb solution in water and drink eases that horrible crampy sensation. Hope things ease for you soon

lina-rowland1 profile image
lina-rowland1 in reply tosoomoo

Thank you for your kindness! I hope that cranberries and maintaining a water regime will keep your situation under control🙏 I also read here that it’s possible to add d mannose to cranberries (I haven't checked myself how effective it is). Maybe you can tell me what antibiotics are prescribed to you during an exacerbation of uti, if any?

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