UTI and antibiotic/work advice with methotrexate & Bellimumab

[Lupeyfrou22]

Hi all,

Long post warning.

Have Lupus SLE for nearly 2 years.

Due to UTI symptoms being worse last night phoned 111 for advice and had out of hours appt at 2am.

Blood and leukocytes in urine. I’m not really unwell with this so far thankfully. I was exhausted just with lack of sleep. So took today off to recover.

Got given antibiotics Amoxycillin 500mg but with methotrexate being Sunday there’s higher rate of toxicity. Advice was consider seeing if get better before take them as could make worse. I’m on HCQ and Bellimumab too.

Impressively (nurse words lol) I’m the best urine sample ever for hydration. Seriously looked like water so I was surprised when blood and leukocytes found.

I’ve been in bed most of day sleeping as well as drinking water. Slight discomfort low down in pelvis and lower back which is manageable with hot water bottle and paracetamol.

I work with children and was off recently though back one day after Covid.

Really I’m looking for other’s experiences in deciding if to take antibiotics or not.

Stinging sensation when urinating has reduced a little. No fever or shivering. BP etc fine last night except heart rate 105 and has come back down to 70 at home so I’m not worried about it.

Tia,

D

[KnitSewPurl]

Hi loupey lou22,Do take the antibiotics quickly it will help .at the same time try to get hold of cranberry juice if you have not had it yet. Drink lots of water. I have been there it is not a great feeling. My felt like bladder was sucked inside out everytime I went to the loo. It was very painful. I never had blood in all my UTIs.but the moment I start to notice I start to have slight discomfort I take cranberry juice or dried cranberries and drink gallons to flush out whatever is in the bladder. I always have dried cranberries at home in a large sealed box in the kitchen ready at hand. And a bottle or 2 of cranberry and raspberry juice .

Did you try Cranberry juice best ones are Ocean spray but I also found Sainsbury's own Cranberry juice is also just as good. If you can get hold ones with raspberry in them is even better.

Also is this your first UTI? If not how many have you had? If you have had more than 3 or so within a very short pace of time GP will need to refer you .

I did see a consultant in the end privately as my appointment for NHS was very long . So , I had a bladder wash out with the bladder wash out you are put on a 6 week antibiotics course. Since the wash out I think I had only 2 mild UTIs . Just making sure I drink alot . That's it.

Hope that helps. xx.

[Lupeyfrou22 in reply to KnitSewPurl]

Thanks. I’ll get cranberry juice (we’ll husband in). No first in a long time and since I started Lupus journey. Thankfully pain ok.

[KnitSewPurl]

Btw the only antibiotics that I can hv and actually works is Nitrofurantoin ( Microbid) . I hope GP gave you a 2 weeks course and not a 3 day course. Because SLE's with bladder issues needs 1-2weeks course of antibiotics usually. 3 days just don't cut it to help the bug especially we have immune response issues.

[Lupeyfrou22 in reply to KnitSewPurl]

It was 7 days Amoxicillin. That’s why unsure to take as they said try to flush out first as worried about toxicity with methotrexate. I thought I was better and started to head to work. Cue getting off bus in a sweat feeling nauseous lol husband on way to collect me and I’ll be on phone to GP surgery at 8am.

[KnitSewPurl in reply to Lupeyfrou22]

I can't take Amoxicillin as I am allergic to it comes up with a rash . Yeh, I am allergic to loads of drugs. Especially antibiotics.

UTI with blood in that state is no way to go to work 🙄🤦 not surprised why you are all sweaty and hot . Poor you, rest well in bed take sending you all my love xx Hopefully the antibiotics will work for you. x

[Lupeyfrou22 in reply to KnitSewPurl]

Cheers. Yeah I felt better (body tried to trick me!). I was in bed most of yesterday. Ahh that sucks re allergies. I’m generally ok this year re allergic reactions phew. GP calling me between 9 and 11am.

[KnitSewPurl in reply to Lupeyfrou22]

Fab service from GP 😁. Just checking to see if the antibiotics is working .

[soul22]

Hi hope feeling better soonI had this also with clear urine

Warning though I did t know I had it

I ended up majors AE e coli UTI sepsis in kidney nephritis septicaemia

3 rd infection bladder had the pain starts mild low back becomes unbearable.

Do take antibiotics u can't have methotrexate when have infection.

All best

[tiredmum]

I get regular uti’s and am normally prescribed a week of nitrofurantoin. If I take the normal 3 day course it’s back within a week.

I also take hydro, Mepacrine and mmf. I have been told to stop the mmf when I am poorly to give my body a chance to fight and recover.

If I get a couple of infections within a few months of each other I am given a 3 month low dose course of nitrofurantoin to take of a night time.

You must take the antibiotics.

[Lupeyfrou22]

That sounds rough. I’ve begun the antibiotics after being worse this morning. I’ve spoken to a GP and just had urine and bloods done with nurse (for methotrexate levels). The urine was clear so I’m hopefully going in the right direction. Thanks