I have had primary MF for 10 years and have recently commenced Momenlitinib after Ruxolitinib stopped working effectively.Over the last year I have suffered at least six UTIs and it is getting me down quite a bit. Last couple showed leucocytes present.
Does anyone else experience similarly and could give me some guidance as all I keep getting is yet another dose of antibiotics.
I’m on antibiotics everyday for utis. 1 month at night 1 tablet and next month 1 tablet at nights ght for a month and alternate each month to keep utis at bay Nitrofurantoin and cefalexcillian
Thanks for reply. Did your consultant or GP put you on the antibiotics? I feel like both GP and consultant don't know what to do with me!!
I was put on them by urologist as I kept getting blood in urine then I was sent to heamatology consultant confirmed I had triple negative ET my go put me on them as I have over active bladder to help with the utis
Have you checked the level of your leukocytes (WBCs)? The JAK inhibitors can reduce your immune system ability to fight off infections.
I am experiencing mild lymphopenia and borderline neutropenia resulting from Besremi. My Integrative medicine doctor recommended a daily dose of Reishi and Astragalus. While I cannot prove that it does any good, I have not had any significant infections.
Wishing you success in sorting out the problem with UTIs.
Thank you. My WBC are increasing each 4 weeks period at moment. Consultant keeping eye on that. Just getting so disheartened with so many infections.
Hi Cazbolac,Not sure if you're a guy or gal, but for women, with age there are changes in estrogen levels that can cause vaginal changes that can predispose to infections. If you're a woman, you may want to talk with your gynecologist as at times topical estrogen creams can help. Of course you'll need to weigh risks and benefits of that treatment...they're minimal but should be considered with your care team especially your MPN specialist. I'd also suggest a consultation with a local infectious diseases doc as they're very adept at dealing with patients with recurring urinary tract infections. Hope you see some relief from the infections soon!
Hi, I agree with you,ET in NYC. My gynecologist put me on Vagifem and it was a game changer! Also, my eczema disappeared! When I had to do a "safety stop" for 4 weeks, it all came back! Try to speak to your doc Cazbolac, as it might be the solution.
I too have been on rux for some time for MF and like you was on antibiotics every other month for UTIs my GP told me to take 1 uriclense everyday, it dissolves in water, and I haven’t had a UTI for almost a year! Definitely worth a try.
Is that the actual name for this “med” (manufacturer?) does one get it in a pharmacy? Apologies for my ignorance : have never heard of it … TIA
it’s a pharmacy product that’s cranberry based . It dissolves like berocca and you drink it while still fizzing. I was very sceptical initially as I have tried ural as well that was no help at all.
I’m in Australia so not sure where the product is made but it says arrotex pharmaceuticals worth a try.
I have PV and have had same effect being on rux. Had to switch GPs (the first retired) and the present one is trying me on a weekly antibiotic for 6 m because he thinks there may be another underlying cause for contracting these UTIs practically monthly. It’s not always urinary but there is always a trace of infection. I feel your pain and frustration - hope you find a solution. Best of health and good luck!
I’m having the same problem. I’ve just started my 4th uti this year. I have MF and started Rux in June 2023. My doctor increased the dosage towards the end of March this year and I’ve had a UTI in May, June,and July and now another one. I go on antibiotics each time.
A year and a half ago I was getting them a lot and my gp put me on a supplement called D Mannose (a cranberry pill) and estrogen cream. I didn’t have a one for a long time so I believe the Rux lowers your immune system and is making them harder to control.
I can't imagine going through what you are dealing with. I hope you get answers to this situation.
I’ve had similar issues this year and was referred to uro-gynecologist. The estrogen cream plumps up the thinning vaginal mucosa and makes you less likely to get a UTI. It’s a tiny dose, administered just twice a week, but has remarkable positive effect. D-Mannose is an over the counter supplement that is also very helpful if EColi is the organism. D-Mannose coats the lining of the bladder and prevents the EColi from attaching to the bladder wall. You can take D-Mannose preventatively or as soon as symptoms start. Preventative dose is 500-1000 mg/day; treatment dose is 1.5gms twice daily. And, of course, force fluids to flush the bacteria out. Cranberry supplements also can be also be helpful, but that gave me an acid stomach. And probiotics were also recommended.
I don’t think the frequent UTI have anything to do with my ET… just being a post-menopausal woman is the reason. Good luck!
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