Frequent Uti’s : Hey 👋🏽 Anyone have any experience... - NRAS

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Frequent Uti’s

Lola80 profile image

Hey 👋🏽

Anyone have any experience having a uti with autoimmune diseases?

I have a uti which I suffer from regularly and started taking antibiotics a few days ago. I’m now stuck in bed with low grade temperature, back pain, nausea and constant drowsiness and aches in all of my limbs 😞

I have Rheumatoid Arthritis but often wonder if I’m developing ms, I go through periods of time when swallowing is difficult, brain fog is frequent alongside all the usual rheumatoid symptoms.

Just feeling a bit sorry for myself as been unwell for day 4 with no one here.

27 Replies

Bad luck! I get them too. It’s because we are more susceptible to infection with the meds we take. My Rheumy sent me to see a urologist. He prescribed Ovestin cream and also told me to take D:mannose and drink loads of water. You can get the latter from Amazon or health food shops and it’s great stuff (better than just drinking cranberry juice).

Aww no I do hope you start to feel better soon 😊 x

I have heard cranberry juice is the best thing for it. X

It needs to be neat and only about 30mls I think

Hi Lola, poor you - sounds like you're really going through it at the moment. I hope the antibiotics kick in quickly for you and you're feeling much better soon. You're not alone, we're here, don't forget that. x

Thank you all for your replies. I’m lying here with a hot water bottle having googled every symptom to death 🙄 I should really put down the phone and try and get some sleep

springcross profile image
springcross in reply to Lola80

Sleep well. x

So horrible- I had never had a UTI until 4 months before my RA diagnosis and I had one after the other or most probably the same one that didn’t clear up

So I am convinced that they are related to RA - they were certainly the start of quite a few strange health related issues that eventually led to my diagnosis

Guess I will never know but since starting on my meds never had one again.

I also found D- mannose helped me the most

Hope you feel better soon

I get a lot of urinary infections and my GP referred me to the Eurology department well over A YEAR AGO !!! Finally my appointment came up last month only to be cancelled. Now it is due this Thursday . Fingers crossed it will not be cancelled. Make sure you drink pints and pints of water . You can also buy in the Chemist a box of six sachets to dissolve in a glass of water . You take one powder sachet in water and drink it down every 6 hours. This helps to dilute the acid in the urine . 😊

I’m going through this right now. Never had a UTI before until May this year. I’m currently on my third 🤦🏻‍♀️ Just finishing my second week of antibiotics and it’s definitely still not gone. Each one has taken 3 weeks to clear so far. I’m more concerned about work than anything as I can’t afford more time off. My rheumatologist suggested trying low dose prophylactic antibiotics if it continues and I think that’s likely what’s going to happen. Hope you feel better soon.

I had this problem and had to keep missing my Abatacept infusion as I couldn’t have it whilst on antibiotics. Eventually my Gp put me on a low dose antibiotic which I take every day and have done for several months now. Eureka - no more UTIs! Hope you feel better soon.

orry to hear about your health troubles. UTIs are the worst! Consider adding probiotics to your daily routine (1-2) daily which are effectively 'good bacteria' we all have in our gut. 70% of the immune system is also located in our guts and when there is an imbalance with our bacteria (bad outweighs good) it can lead to yeast infections and Utis. I swear by probiotics and take 2 daily . They can be purchased from amazon and are not overly expensive (10-11pounds for 60 tabs).

Anti biotics also cant tell the differenve between good and bad bacteria and kill both when used which is why probiotics are great to help the re balance . Always finish your anti biotic course of course! But by adding probiotics to your daily routine, it might help keep UTIs at bay. I suffered constantly from them years ago (5 in one year) started probiotics and none since. They are pretty much health supplements but you can chat to your doc prior to taking them. Hope that helps :) and feel better soon! x

Ps they might take a few weeks to take effect but long term you will notice a difference

I’m so sorry to hear how unwell you are with your UTI. I have had recurrent UTI’s for the last five months. Ended up in hospital twice as mine develop into kidney infections.I started a low dose of daily antibiotics in July and was referred to urology.

I currently have yet another kidney infection and on very high doses of antibiotics again and my GP re referred me to urology as the hospital said they didn’t receive my first referral in July. Within two days of my GP doing the new referral I have had a appointment for a telephone consultation with urology on the 16th November. I have had six infections now within five months and it is really messing up me taking my biologic so hoping to get to the bottom of it soon x

Oh Gail you poor thing! I hope the urologist can help you and get the problem sorted soon. X

Thanks lovely hopefully they can sort out these UTI’s. I have done fairly well since being on a low daily dose of antibiotics but this is my first one since being on a daily dose of antibiotics in July. I’ve antibiotics for the rest of the week so hoping 10 days of very high doses of antibiotics will get rid of the infection fully. Sad that I have a phone consultation in November as suspect they will then need to do further tests so could be next year before we have a way forward. I am just grateful that my GP re referred me so quickly after the hospital lost the first referral. xx

Aww Gail, I'm so sorry to hear this, it's very persistent isn't it and I wish they would get it sorted once and for all so you could have some peace and normality. Thinking of you. 🤗 xx

These infections seem to love me. I was hoping that the low daily dose of antibiotics would stop them completely but I can’t grumble as had two months with no infection. Hopefully now I am under urology that in November they can work on a plan of action to stop them completely. xx

Wobbies profile image
Wobbies in reply to Summerrain14

Oh Gail, sorry to hear you are still struggling with that kidney infection. 16 November is a long way away after it was their mistake that you were overlooked. Hope the urologist can sort it out. xx

Summerrain14 profile image
Summerrain14 in reply to Wobbies

Thanks lovely, this is the 6th or 7th infection on the last five months. I was hoping the daily dose of antibiotics would keep them at bay and to be fair I have had two months with no infection. Hopefully the urologist can come up with something to stop them when I speak to them in November xx

Wobbies profile image
Wobbies in reply to Summerrain14

Let us hope that they have a better antibiotic for you. xxx

Well I couldn’t even get a GP appointment for today ☹️ but I already have one pre scheduled for tomorrow for something completely different so I’ll have to tackle it then (if she lets me, she’s very strict with one ailment per phone call 🙄)

So far I do t feel as bad as yesterday but I’m still going to take it easy today.

Thanks for all of your support x

Lolabridge profile image
Lolabridge in reply to Lola80

Do make your GP and receptionists aware that when we get infections it is serious because we can deteriorate very quickly. So you are likely to need a same day appointment and antibiotics immediately.

Well hey there Lola80 cwtch to ya I have had UTI'S since I was a teenager however I would recommend Holland and Barrett Cranberry Capsules they have to be the concentrated ones they have worked for me have been taking them for years really hope this helps take care 🙂

Oh bless you. I’m writing this from my bed with which also started as symptoms of a UTI so rang 111 on Saturday as our GP’s are closed at the weekend. They prescribed antibiotics but I have been so unwell with pain everywhere & the worst headache I’ve ever had since Saturday night. I managed to get a call back from GP this morning who said to stop the antibiotics as he thinks it’s a virus. I’m a bit worried as I ended up in hospital the last 2 times I had them. So please take it easy & hope you start to improve really soon. X

I haven't had a uti and had ra for 19 plus years. I would talk to your gp about your concerns to put your mind at rest.

So I missed the phone call and now waiting for the call back 😤

The infection seems to have calmed down now which is good but My mental health is not good today and I feel terrible. Back to bed it think

Glanced through the list but could not see any mention of potassium citrate mixture (mist.pot.cit) Used to be available in hospitals, prescribed by doctors and available at pharmacies for UTIs. It is becoming more difficult for me to find.

It has held almost all such infections at bay for me for nearly 60 years now. Only the very odd incursion into antibiotics which I tried to turn down.

I am told by a doctor that every female ward in the liverpool hospital on which he worked carried a large quantity of it and it was surprisingly effective for such infections.... almost magical

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