Urinary issues

[hollymae]

Hi everyone here’s hoping you have some advice. I’m on ruxalitanib for my MF and doing ok apart from repeated urinary infections. I wondered if anyone else had the same problem. I would like to reduce the amount of antibiotics I am having. I am on a blood thinner so that limits my choices!

[socrates_8]

Hey Hollymae...

Are you also taking an 'Anti-Viral' like valcyclovir? (spelling?)

Often, once people are given Ruxolitinib, they are also started on Anti-virals to prevent latent infections from things like: TB; Shingles: HPV etc...

Urinary infections, and infections period can & do arise when taking Ruxolitinib.

Best suggestion that I can make is to talk w/ your MPN Specialists ASAP!

Best wishes

Steve

[Barbara140]

Hi, I had 2 or 3 urinary infections when I began taking Ruxolitinib. Very uncomfortable but quickly cleared with Nitrofurantin. I haven't had one for the past few months. It's important to take the full course to get the bacteria out of your system. Hope you get it sorted out soon.

[beetle in reply to Barbara140]

I have had so many urinary infections that my doctor has now given me antibiotics to keep at home so I can start them as soon as I get symptoms. I started the latest infection last Friday evening but didn’t get a lab result until yesterday. That would potentially have left me with an uncontrolled infection for five days. I am neutropenic so that would have possibly been quite dangerous for me. Without ‘standby’ antibiotics I would face a two hour round trip to the nearest hospital at the weekend. I hope you get your infections under control. Drink as much as you can to flush it out. Best wishes, Jan

[liarose in reply to beetle]

May I ask which antibiotics you use. Thanks

[liarose]

I have the same problem. can you tell me what antibiotics you have tried. I usually have Nitrofurantoin but have been put off using it too often. Thank you

[beetle in reply to liarose]

I am using cefalexin at the moment. At the beginning of any infection I take a sample to the doctors to be sent to the lab to tell me which antibiotic the current infection is sensitive to. Nitrofurantoin is a good bet as it is a quite broad based antibiotic but like you I am wary of using the same one too much

[hollymae]

Thanks everyone for your comments I have been on nitrofurantoin it seems to clear it up, but it soon comes back. I’ve spoken to the haematology nurse and the consultant their view was it is something hard to manage.

[Runner999]

I have ET and am on hydroxycarbamide (2 years) - and have been having repeated cystitis since the summer. I am currently on a 3 month course of Nitrofurantoin to see if it makes any difference. Also trying to do my pelvic floor exercises as this seemed to weaken at the same time!

[skipperL]

I am also on Ruxo and have had repeated urine infections. Have now been referred to the urology dept at the hospital to have a bladder CT and flow test. Will possibly be put on a low dose of antibiotic all the time. Usually take Nitrofurantoun or Fosfomycin (single dose). Hope a solution will be found! All the best Skipper

[Kekoa]

If the infection is due to e-coli, D-Mannose should work. It is a natural remedy that comes from cranberries. You can get online.

[skipperL in reply to Kekoa]

Have just started taking this - finding the pills so large and difficult to swallow! What dosage do you take?

[hollymae in reply to Kekoa]

Thanks I have bought some

[Kekoa]

I buy it in bulk and take it in about a half cup of water.

[skipperL in reply to Kekoa]

But do you take 4 tablets as recommended?

[Kekoa]

If you have capsules, just empty the powder into water and stir and drink. Take the number recommended on the bottle.

[skipperL in reply to Kekoa]

Thank you for your adviceSkipper

[Borage]

Urine retention can lead to infection. It may help to stand up, even walk a few steps, then try again to see if there is any more urine to come. A gentle pressure above the front of the pelvis may help.

I had to measure an intake and output chart for three days for stress incontinence issues.

The Physiotherapist was appalled at the capacity of an overstretched bladder. It is called Midwife’s bladder for good reason, not enough time to take a pee.