Uncomfortable Bladder /infections

[Jetxav]

I've not been in here for a few months, as seen to be living in limbo since the RA Consultant left the hospital (yes, the third one I think as they can't get them or keep them) and in the last 9 months almost have only seen a new (they also left the hospital) nurse practitioner once. He seemed pleasant but made no impact at all by saying just stay in Mycophenolate and return in six months! He also said it wasn't really necessary to have monthly blood tests and every two months will do. I feel there's nobody there now that can help or in fact is interested - what to do? Also has anybody had recurring bladder infections and is it connected to RA as my Sister has RA and suffers the same. After four different antibiotics and being informed the infection is resistant to three of them so far - it's back within three days!

[wishbone]

Recurring UTIs could be due to taking immune suppressants and there could be an underlying cause. I also have recurring UTIs which have become resistant to all of the common antibiotics, surprisingly quick too! If I have any symptoms now I have to be admitted to hospital and given IVAs. Not saying this will necessarily happen to you as I'm a male with an atonic bladder condition, but it might be a good idea to have a serious talk with a consultant. Seeing different ones all the time doesn't help much does it.

[Jetxav in reply to wishbone]

Thanks Wishbone. Yes that seems to be what happens as my Sister, who also has RA, is in that position herself and frequently admitted to hospital for drips, which help but then the infection quickly returns. It's time new drugs were developed to help people like you and us. I wonder if the secret might be in some form of natural therapy/medication? Good luck!

[wishbone in reply to Jetxav]

I'm hoping to try a new drug soon (currently only taking hydroxy). It's called baricitinib (BARI), a JAK inhibitor which is a new class of drug. My rheumy tries her best to help me and referred me to an immunologist for tests to make sure I was ok to start the BARI, which I am - thankfully! Although BARI is another immune suppressant, it differs from the others as it targets specific parts of the immune system, unlike non JAK inhibitors which tend to blanket bomb it thus making it less effective at fending off infections. That's the plan anyway, can only hope it works!? Would be a godsend for the likes of us if it does the trick.

I have my rheumy appointment on June 28th. Will keep you updated if you wish?

Are you and sis's UTIs caused by an e.coli type bug?

[Jetxav in reply to wishbone]

Certainly would like to know how you get on. I had a brilliant Consultant like that and an equally good Rheumy Nurse but both left early last year and now there seems to be nothing except an overworked nurse who I have only seen once and just said 'carry on as you are and see you in six months!' Best of luck.

[wishbone in reply to Jetxav]

Thanks,

I'm lucky compared to you. I've had just two consultants in the 15 years I've had RA. Been under my current one for the last 6 years.

Good luck to you too.

Will keep you updated by PM if that's ok with you?

[Hobbledehoy]

How rotten for you all round. Hope situation improves soon. Good luck. Where in the country are you receiving such v patchy care?

[Jetxav in reply to Hobbledehoy]

My Rheumatologist left and the temporary consultants that were employed at the hospital weren't particularly good and also soon left. Worst still was the departure of the Nurse Specialist who then left. She was my lifeline at the end of the phone in need and the one who always pushed to get other problems sorted too, so now there seems to be nobody who cares or can help. I am in East Kent.