Urine infections to blame for biologics

[AbbieJ55]

Was on Enbrel then benipal did wonders for my arthtitis but now getting severe urine infections ....had to stop the injections....so disappointed as was doing so well .Anyone else had bother ?

[wishbone]

Yep, sure have! I have a bladder condition, hence prone to UTIs. Three years ago I went down, literally, with septic arthritis in my hip...ouch! Had two ops to clean out infection followed by 7 days on IVAs, then discharged from hospital with a sackfull of strong oral antibiotics to take home. I was on enbrel at the time, which, like you, worked wonders for me. The consultant told me not to take it again as he believed enbrel was the major player in allowing the bug from a recent UTI into my bloodstream. Eighteen months ago I was hospitalised again with UTI related sepsis. Not as serious or as painful as the last time, but still a big concern.

Following the last episode it was decided that it was best to stop treating my RA with all types of immune suppressants, including steroids, because of the high risk of getting sepsis again. I haven't had a single UTI since stopping the meds 18 months ago. Would have had at least 3 during that time when I was taking meds. Trouble is the obvious consequences of stopping these meds is that my RA is now causing me a lot more grief than it did before.

[Jesnaskah in reply to wishbone]

Wishbone... I'm so sorry to hear this! Are you trying natural things like curcumin, cbd oil/cream, or ASTAXANTHIN, or low dose naltrexone which is not toxic?? Just trying to offer some helpful suggestions for RA pain.

[wishbone in reply to Jesnaskah]

Thanks for the suggestions.

I've cut back on red meat, take probiotic capsules & bio live yogurts to combat acid reflux, and manuka honey for UTIs. Have tried CBD oil.

No idea if red meat reduction is doing any good. Probiotics seem to be helping my stomach as it has improved, but difficult to be sure as I stopped taking naproxen and aspirin albeit some time before starting probiotics. Can't be sure if manuka honey is helping much as I started taking it not long after I stopped all my RA meds. There's little doubt that stopping the meds is by far the main reason that I've been UTI free for the last 18 months, but I have no intention of stopping manuka as it may well be playing a roll in helping as well...plus it tastes nice, which it darned well should given the price of the stuff! Tried a good quality CBD oil for 10 weeks but did not help at all

There's so many natural remedies out there that I find it difficult deciding the best one to try next. I think curcumin, which I've heard plenty good about, is next but I won't start taking anything until I get the ok from rheumy. I'm due an appointment this month, or should be, so I'll ask then.

[AbbieJ55 in reply to wishbone]

Thank you for your reply it's scary tho how the docs still want us to keep taken it . Was told yesterday to go back on Enbrel , after a 3 week break , after my reversal hip op next wed .....will keep in touch as would like to hear more of your journey with this horrid RA........best wishes .

[wishbone in reply to AbbieJ55]

Hi Abbie, not sure why some rheumies want us to continue with enbrel and the like. Maybe they can be a bit too focused on treating our RA witout due regard to other ailments we have. Might be best to raise your concerns with your docs if you haven't already done so.

I'll be interested to hear how you get on too. Hope your hip op works out ok.

[AbbieJ55 in reply to wishbone]

Thank you for your reply ,very interesting.

I'm going in to hospital on 21st feb for revision hip surgery . Rheumatoid doc told me yesterday I've to go back on Enbrel 3 weeks after op . Bet the urine infection s continue then .......will keep in touch ...

[wishbone in reply to AbbieJ55]

The very first UTI I had after starting enbrel caused the septic arthritis in my hip. If you've had a number of UTIs since starting enbrel then maybe you'll be ok to carry on taking it. Obviously my sepsis required urgent surgery, but the orthopaedic consultant did tell me that the usual procedure was to stop enbrel two weeks before any surgery is carried out. Something to do with enbrel slowing up the healing process apparently.

[Jesnaskah]

That must be really frustrating!! I've had some issues but that was when I started MTX... And docs kept giving me antibiotics assuming it was a UTI. Never got to the bottom of it. But I ended up on antibiotics 3x! And probably for no good reason.

[wishbone in reply to Jesnaskah]

Lost confidence in my GP regarding antibiotics after he tried giving me 5 consecutive courses of nitrofurentoin even though they failed to clear a stubborn UTI. I refused the fifth course. Lab tests on my urine did show it sensitive to nitrofurentoin so I can understand in a way why he persisted, but come on, if 4 courses of high doses of nitro over a couple of months didn't shift it well somethings not right. Anyway it later came to light that my e.coli bug is resistant to all of the common antibiotics, including nitro, that a GP can prescribe.

After 3 + years of infection issues, take it from me...antibiotics and bugs are a complicated business.

I should emphasise that my situation is different to many people though because I have a chronic urine retention condition.

[Yogi-bear123]

How old are u? Am on benepali and have had a few urine infections. 2 things I do... recognise the symptoms before they take ahold and get on antibiotics quickly! it will actually come back as negative in the urine test) also , I'm 58 so I know that if I use oestrogen cream internally I don't have problems .

When I was in my 20s I ended up in hospital with a kidney infection, it started as cystitis but I ignored it😩Good luck!

[Gnarli]

Well that sounds rubbish and I'm sorry you're having to cope with it. I've been told I will not be considered for biologics given the number of UTIS over this last year despite the fact that 4 tests showed no bacterial growth. Being post-menopausal I was prescribed oestrogen pessaries and -ta da- no more UTIS. Wishing you better

J

[wishbone in reply to Gnarli]

I think the orthopedic consultant who stopped me taking enbrel would agree with that decision. He seemed more concerned about stopping biologics than DMARDs. If you can get by without biologics then I think it wise to keep it like that.