Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then I have had countless uti,s throughout. I'm on my 5th lot of antibiotics from October 23 to now so in space of 3 months. I manage to get in to see the nurse at the gp practice who treats them but it's not helping and I feel really yucky and ill with it. I've tried ringing the rheumatology nurse line but automated message says they are extremely busy and not taking calls at present . I'll try and get an appointment with a Dr to discuss it further at my gp practice . Has anybody else struggled with this and antibiotics not clearing it up. What treatment was offered?Thank you for reading this and giving me the space to share as it's going round and round in my head I feel helpless xx
Constant uti's: Hello everyone Hope you are all as... - LUPUS UK
Constant uti's
They( your GP) shd hv referred you to a urologists specialist after 3 repeated failed attempts. Especially with auto immune they need to refer you to one. Ask for a referral letter from themto see a urologists specialist, if you can go private do so waiting list on NHS is long.
I did with mine. I had bladder washout it helped then 6 week course or Macrobid. But found that it only cleared up totally by stopping eating gluten. Mainly gluten ,oats and barley. There were certain foods produxts makes our bladder more suseptible to UTI. It act like an inflammation to the bladder.
Using cranberry was only temporary measures. After a while it does not work . Any food product with "sulphates" will react to the body as well especially the bladder if it is already inflamed. Check all labels of what you buy in the shops.
The bladder wash out is to help clear out the bacteria that is in the bladder. Once cleared out you should feel alot better. Hope this helps.
I have been there before so I know what it is like not nice and feeling ill with this is not the best thing for our illness.
Take care hope you can get it sorted asap
I'm definitely going to mention that to my gp. I didn't know about bladder wash out but it sounds like something I would benefit from so that information has helped as I can mention it now when I see the gp. If I have no joy I'll have to go down the private route for the initial first appointment. Sadly I think that's the route nowadays. Thank you for you reply and have a lovely Christmas x
And you Lucylou Have a blessed Christmas hope you get it sorted out. Yes , bladder wash is what cystoscopy does there is also another treatment they only do it on private they line the bladder, I don't think they do it on the NHS . I was supposed to go for that until I had a bad reaction with general anaesthetic reacted with one of the drugs they gave me 😅 I am known to react to quite alot of drugs my husband is now so immune to all this drugs that I cannot have. When the guy at the hosp recently ask me are you allergic to any drugs I both of us looked at each other it was like asking an open ended questions...🤣🤣 My husband said to me later he should have seen your notes you have a mile long of allergies!!
When you attend a private consultation they always do an ultrasound of your kidneys and bladder to check to make sure that everything is ok as well. Before they can proceed with the cyctoscopy they usually then to do it on the day of the appointment if they can to rule out any issues to try and get you in as soon as possible for the procedure to get you well.
You will be surprised how rapid and fast you will be seen and how quick you will recover.it might not be over night but you will definitely feel alot better. One thing for sure the bladder pain will be gone and you will be able to pee properly 😂
At least there is light at the end of the tunnel. We have to push through the systems to get help now don't we and desperate measures mean alot are having to go private now. Xx
hi Lucylou72 - you have my complete and utter sympathy. I am 63 and was diagnosed with mild lupus in 2015 after a lifetime of symptoms and investigations. I had repeated “UTIs” (reason for quotes will become clear) for 40 years - so debilitating, especially when travelling as they would come on so suddenly. tried all the usual remedies suggested by GPs and pharmacists - cranberry juice, sodium bicarbonate, drinking water for England, avoiding tight jeans, urinating immediately after sex, only thing that offered any kind of symptomatic relief because I felt I needed to pee all the time was sitting in a warm bath, but that was not always available to me. GPs did their dipstick & lab tests & prescribed endless courses of antibiotics, with all the attendant side-effects; more often than not they did not clear symptoms. Symptoms would often disappear as suddenly as they came on a week or so later. Though classic UTI symptom is pain/burning on micturition, weirdly that was the only time I didn’t feel discomfort, micturition was pain free until the very end of the stream when I would get searing urethral pain. I would drink litres and litres of water a day so I could pee & even though it felt like my bladder was about to burst I would pass only drops and that was painful, but when I did go - ahh, respite - which is the exact opposite of the classic UTI symptom. I mention all this in case you find any similarities. because 5 years ago a GP finally listened to me and offered a diagnosis of interstitial cystitis instead of immediately prescribing antibiotics and referred me for cystoscopy. thankfully it showed nothing sinister, I was offered prophylactic meds but declined as the frequency and severity of attacks had diminished with age and/or maybe because since my diagnosis I’ve made a lot of lifestyle changes as I’ve become more aware of link between diet and inflammation. As KnitSewPurl rightly said, avoiding certain foodstuffs can help. Really hope you get the help and support you need because I remember the misery of it & know how frustrating and demoralising it is to keep getting prescriptions for antibiotics that don’t work, especially since they bring their own problems. Sending love x
Hi thank you so much for your reply. I too have intersistial cystitis I was diagnosed with that just before lupus. Yes you are spot on it is demoralising and you feel unheard and alone with the problem. I too find the hot bath a relief and like you I'm drinking loads of water but that isn't doing what it should because my urine smells terrible. Thank you sending love back x
I agree you need a urologist. When this started happening to me I was not diagnosed with anything. Turned out I had a kidney full of stones and it was failing. They found out when a stone got stuck coming out but I was not referred before this despite repeated utis. Kidney stones are always a possibility with Sjogrens and kidney issues are a possibility because of Lupus. Antibiotic can help with the symptoms but you need to find out why you are getting constant infections. To be honest they should have referred you by now. I went private in the end to a Urologist as I had Bupa at the time. Ended up having a kidney removed. That's the worst case scenario. Try and use vaginal moisturiser internal and external but ph balanced, every day. Don't use soap down below unless again its ph balanced and then sparingly. Try not to have baths, Keep extra clean when you wipe down below and use skin kind wet wipes when you need to after going to the loo. Faecal matter can be a big cause of utis. Wear cotton or bamboo pants. Make sure you keep a sample of wee each time you have a uti and get the GP to send it off to the lab as this is crucial for a urologist to see what bacteria is causing the uti and what antibiotic will treat it. I have an arrangement that when I test positive for a uti at home I take a sample in straight away and it goes off to the lab so its recorded.
Most important though get a Urology referral from your GP or Rheumatologist. You are having too many Utis for it not to be looked into. Anti biotic can play havoc with Lupus and Sjogrens symptoms too so you don't want to be on it too often. Also you can start to become used to certain antibiotics and they no longer work. I hope you get help soon but don't let your doctors do nothing about it. Better to be safe than sorry. Since my diagnosis a couple of years ago with Sjogrens and Lupus the Rheumy has said I lost my kidney more than likely due to Sjogrens and the kidney stones it produced.
Hi dgBless you going through all of that. I am definitely making an appointment Friday morning and want to see a Dr this time I've seen the nurse the past 5 times but in all fairness I want more doing about it. Was your recovery long after having your kidney removed I'd imagine you felt very sore after. How are you since x
Initially waking up after the removal was the worst pain I'd ever had. I'm lucky I was the 2nd in the UK to have single port keyhole surgery so only one hole in my belly. Having stones removed from the other kidney didn't hurt at all upon waking up from surgery. I go privately every couple of years for a ct or ultrasound to monitor the kidney for stones as they don't offer it on the NHS. Annoying! Now I know I have sjogrens I will continue being checked for stones as I can see the damage they do. Having a stone stuck is pretty awful too. Its a get to a and e moment ASAP. I had a lot of low back pain with my kidney issues so keep an eye out for that. So glad you're going to get a referral the nurse can't do that for you.
I didn't know that about sjogrens and kidney stones so I'm glad you explained it. I feel like you are given the diagnosis and medication and left to get on with it. do you feel like that. It's a battle for help or until you see the right person which can feel overwhelming and exhausting but we do it.
Yes it always has been a bit like that before diagnosis but its a bit better now. There are just some things that the nhs won't pay for. I'd rather know if I have more stones and where they are though so I'm ok to pay. Urology is the place for you next and I'd be surprised if they don't refer you once you've seen a gp after so many UTIs. Do push for it as it's good to know. If you're doing everything else, keeping clean down there etc. there is not much else you can do yourself. I did find that most Urologists see more men than women so mine was a bit ill equipped to deal with a women's urinary tract. 😆 They may not know about the link between Sjogrens and kidney stones as its a newer thought being investigated but both my Rheumys knew there is more than likely a link. I was only 37 when they found I had loads both sides so too young at that point for it to be a consequence of old age. I do drink cranberry juice but I'm not sure how helpful it is but I like it anyway. Keep fighting for an answer to the UTIs it may be well worth it. If nothing is found you haven't lost anything investigating.
Hi Lucylou, I don’t know how old you are and whether you have had a hysterectomy but I had constant UTI’s for nearly four years. They tried me on low dose Trimethoprim for two years, it did nothing for me. The only antibiotic that eases it is Macrobid. I was referred to Urology, told that my bladder diverticulum was responsible and offered a pelvic portal. I was horrified to be honest. Two years on a Urology Nurse on a telephone call to me asked if I had ever had HRT after my hysterectomy. I had but it put my BP up so was stopped immediately and that had been in 1981. She said then you definitely will be suffering from vaginal atrophy. She prescribed vagifemme to be used twice weekly plus a vaginal moisturiser. Since then I get roughly one or two UTI’s a year not one every two weeks.
If this isn’t your particular cause you need to be referred to a Urologyist to ascertain why you get the infections. They are uncomfortable and embarrassing at best and painful and debilitating at worst so you need expert help.
I take cranberry supplements daily and drink a lot of water to flush out my kidneys but it didn’t help me. So sorry that you are suffering and I hope you get the help you need xxx
Hi Cecily, thank you for replying , the support on here is so comforting and understanding as it can feel so lonely x I'm 51 and on hrt. They put me on it when urology diagnosed me with intecistial cystitis and it really help along with medication. I'm going to see the gp Friday because it needs looking at dosent it and the nurse probably can't make referrals ect so wish me luck getting past the receptionist ( I'm sure it will be fine and I'll get to see a doctor) have a lovely Christmas with your fur baby. My little dogs 11 .I tried to book in to see santapaws at the garden centre but they were fully booked so I'll make up for it and spoil him even more at Christmas 🎄 xx
Hi Lucy so pleased that you are seeing your GP. It gets you down getting repeated infections. My boys Finlay and Skye are going to a Christmas Party on Saturday. They have a field with a barn, a Christmas tree, good bags and a Buffett. They are wearing Christmas jumpers and I have handed in two Secret Santa Paws presents today so they will get a present too. Skye went out running with the dog walker today for the first time. He knows him so well now as he tries to get out with him three times a week when he picks up Finlay , so he went off all excited. He is absolutely shattered now but did well on the long lead. He has been so despondent watching Finlay go out, they are so bonded now but we have been waiting until he got big enough. He is five months old now but still so small ( height wise at least lol).
I hope your little one gets a lovely Christmas and that you get the referral you need and are able to enjoy Christmas too 🎄🎁 xxx
How lovely for the dogs and the adults too! All that unconditional love and doggy licks and kisses to go around .they will really love that .
They will be loose in a field with ten other dogs of all breeds and sizes. It is quite wonderful to see the videos xxx
I have 0.5mg estrogen cream and steroid cream when I get uti flare ups.They really help me with the discomfort but unsure how to stop these utis coming back.
Hi can you buy the estrogen cream. I'm on hrt patches and have the coil for progesterone. I'll pick some up in boots if they sell it x
I don't know. Doc prescribed mine .
we are all different but I think you need a urologist, I used to suffer infections and take many antibiotics and once seen by urologist we found I had a floating kidney which was twisted and duplex system. The not emptying properly was causing infections so at least I had a reason for why they were happening. which is what I think you need to know rather than just keep treating them ,why you keep getting them and a urology appointment would help. good luck 🍀
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