This is the first time I’ve posted on here but i’m worried about my symptoms which have got worse recently. In early March of this year I was hospitalised with Urosepsis and subsequent to IV antibiotics I have been on 4 rounds of antibiotics for repeat UTIs. Every time I come off the antibiotics about 2 days later the symptoms come back (painful bladder, kidney pain on both sides and nausea and mild fever). My fever was 105 when I was hospitalised!
Since I’ve spent more time in the sun in lockdown and working from home I have the following symptoms:-
Very red butterfly rash over nose and cheeks (burning skin)
Itchy skin rash on chest with slight raised patches
Mouth ulcers on both sides (very painful and seem to appear from nowhere)
Joint pain (esp knees, ankles and wrists)
Migraine and nausea (never get migraines normally)
Very painful hip
At times very bad anxiety and panic
Background history
I have unmedicated thyroid autoimmune disease with TPO anti bodies and TgAB antibodies over 1,000
Multi-nodular thyroid gland
Chronic Low lymphocytes and white cell count
Raised CRP (in March it was 22) should be < 5
Chronic iron deficient anaemia (ferritin struggles to get over 10 and has been as low as 3 !) Full investigations cannot find a cause
Raised ANA 1:80 (in 2015)
I was tested for lupus in 2015 but had negative lupus antibodies then but symptoms have got a lot worse this year.
My question is, now I am entering the menopause is it possible I could now have lupus ? My GP is considering referring me when the COVID situation has calmed down but no promises! I am now living on Trimethoprim antibiotic on a long term basis.
Thank you so much to anyone who can give me a bit of advice or any pointers.
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Elsa1509
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Hi Elsa. The fact that the kidney infection comes back that quick suggests to me that you have pyelonephritis meaning an infection of the kidney not just the bladder. This requires weeks of IV antibiotics typically. Have they ever imaged you’re kidneys eg ultrasound or CT to make sure there isn’t a abscess? Do you know what bacteria is growing in your cultures by any chance?
I think you should be tested for lupus again but I’d wait until you get the infection under control. A rheumatologist would be best able to evaluate, diagnose and treat. When reading your symptoms, something autoimmune definitely seems to be going on. Thyroid AID is highly associated with a few other AID as well. A dermatologist should look at your rashes. They may want to biopsy which also helps with diagnosis.
Take pictures of rashes and document your symptoms. Take them to your next GP appt...whenever that may be...or show them over telehealth.
I hope you find answers soon. Sending hugs your way. ❤️
Thank you so much Jmiller623 for your reply. In the hospital my blood test didn’t show any kidney markers which was strange and I only had leucocytes in my urine sample. However the IV antibiotics worked really quickly and brought my fever down in a matter of hours so I was then sent home with Trimethoprim. At the end of this course the infection returned with in 24 hours (kidney and bladder pain, nausea and fever). Strangely it never hurts when I actually go so I don’t get some of the classic symptoms ! Went on to Amoxiclav which worked quickly. Then the infection returned within 10 days of this and then again .....
The hospital recommended kidney scans and cystoscopy but then lockdown happened so all this has been completely shelved.
I have sent photos of my rashes to my GP so that’s good but they can’t begin to look into it for months and seem to only want to have my urinary symptoms investigated rather than any autoimmune aspect.
I really hate living on antibiotics so it’s far from ideal !
Re my thyroid my TSH is always around 1.3 and mid range FT4 but very low FT3! I have had thyroiditis twice in the last 24 years.
I also have Supraventricular Tachycardia but this seems to have calmed down since I’ve been housebound and not racing around !
Thank you once again 🙏 and I really appreciate your input.
Hi Elsa. Yeah. You def need kidney imaging and a cystoscopy wouldn’t hurt to see if you have cystitis. I worry that your kidney is inflamed and it is setting you up for infections or you are refluxing from bladder spasms. It worries me most because nephritis is what most worry about with lupus. As long as your kidney labs are fine, I’m sure waiting is okay. But I would really press your doctor to get some type of kidney imaging if you can. If you keep going back on different antibiotics, the bacteria could become resistant and hard to treat. Maybe even seeing an infectious disease specialist would help. They could also work you up for immunodeficiency which could also predispose you to recurrent infections esp UTIs. It’d be cool if IVIG was the answer to your problem.
Feel for you, I have had/have most of what you are talking about.
Low ferritin (a specialty of mine) can be attributed to thyroid issues (which I also have) I have been investigated to find out why I lose ferritin but no answers.
The rash could be the lupus rash of it is over your nose, joint pain also lupus...
I, after decades of what they thought were UTI’s was diagnosed with interstitial cystitis. It masquerades as an infection but isn’t ... it might be worth investigating... I take lots of antihistamine and that can help. Also bicarbonate of soda in some milk seems to take the pain away.
Mouth ulcers were a recurring event when I was first diagnosed with lupus and were a sign that I was in a flare along with a rash /hives on my skin.
I was led to believe that nice I hit menopause my lupus had a chance of calming down rather than increasing, I am yet to see that.
All your symptoms would suggest some sort of autoimmune condition so make sure that you get referred...
good luck, it is not very pleasant whilst you get diagnosed but once you are, there is a lot of medication that you can take and you will learn to manage it
Feel free to contact me if you need any further help or just someone to sound off to xx
Thank you so much leuann133 for your reply. That’s interesting that you have thyroid issues and low ferritin. If you don’t mind me asking are you on thyroid meds? The only time I was prescribed them was a year after my daughter was born and I had thyroiditis and my TSH went into double figures ! I didn’t take the drugs in the end as the episode only lasted a week - it was really strange and I had all the symptoms of a very overactive thyroid !
I have wondered at times if I have interstitial cystitis as the last ‘infection’ it was just pain rather than a fever but it’s strange how the antibiotics then seem to work although I took them within a day of the pain starting.
That’s also interesting that you had the mouth ulcers when you were diagnosed and I am also getting some hives on my face intermittently. I’ve done a lot of research and I do seem to fit the lupus picture (especially as my facial rash is just over my nose and cheeks and sometimes actually looks like the shape of butterfly wings on my cheeks !)
Thank you so much for your help - it has really helped and this is such a wonderful forum for support. I do feel very anxious and ‘alone’ with all this and anxious about the virus as well so I’m wondering when I’ll ever feel normal again !
Hi Elsa, above all, try to calm your mind, anxiety can cause disease activity having said that, it is easier said than done! I have one friend in particular on here that has got very good at talking me down 😊
I am treated for under active thyroid but have to take 250g thyroxine which is about 100g more than I should need for my height and weight... (5ft 5, 7st 13)
It is a real mystery... and when I am under medicated I feel quite rough in many ways. The ferritin theory is one that I came across whilst looking for something else, I have iron infusions at our local hospital regularly since I was referred to them 5 years ago. We just can’t seem to find out why I have the issue so I am grappling at straws.
The cystitis/IC is another long story in my case. I started with what I thought were cystitis bouts back in my 20’s (now 52) and for years, especially once I was diagnosed with lupus I was prescribed storecupboard antibiotics. When my lupus was very active in my 30’s, at one point I was taking 30mg pred and MMF every day for over a year... and I noticed that I didn’t get any UTI’s...
Fast forward a decade and I ended up in A&E in excruciatingly awful pain ... they decided it was a UTI and gave me antibiotics, and just as they were about to admit me, I felt a little better, as the antibiotics worked so I was able to go home, but 5 days later my GP received the results from my uti ever sample and surprisingly there was no infection, just a shed load of red and white cells.
To cut an even longer story short, I tried dealing with the frequent flares with anti histamine and that helped... bicarbonate of soda in milk... and occasionally a dose of steroids. I then reported back to my GP, was referre to urology and a year later after numerous tests, diagnosed with IC. I now have medication that helps me to manage it... and it is far better than antibiotics, but be aware, you get fevers with IC and feel systemically unwell so it is really really difficult to self diagnose...
Courage my lovely, stressful times, drink lots and lots of water, that will help the cystitis/IC
Wow, this is such interesting (and helpful) advice and thank you so much for telling me about your situation and diagnosis. I too am 52 years (!) and had a fairly regular cycle until March of this year - now nothing (for the moment).
I so agree that I don’t want to live on antibiotics and if they can find a root cause (probably autoimmune) for my UTIs/cystitis I could then maybe take appropriate drugs!
My anxiety has been so bad recently that I have lost weight and am now underweight for my height of 5 foot 6 (I’m 8stone)
I am wondering if my anxiety is related to the autoimmune and it’s a chicken and egg situation !
As my ferritin dropped to 8 in Feb of this year I started taking high dose iron again and I wonder if this increased my inflammation as I got the urosepsis after 2 weeks of this regime especially as my gastroenterologist has said my body literally can’t absorb/ store iron.
Basically my head is spinning trying to work it all out and what I can do for the best !
I can’t tell you how much you have helped and I really appreciate your support and telling me about your health journey. It seems we’re quite similar with our symptoms and the pattern of these!
I know that my bacteria is E. coli when I had a UTI before Christmas !
I will try the antihistamines for a bit as I also have bad sinuses and hay fever but try to ride this out without these. I’ll also try the bicarb of soda ! I’m on 1,000 mg of powdered Vit C a day so hope that’s not upsetting my kidneys !
Just a quickie... if they found E. coli, it probably was an infection and secondly, sounds like you have been investigated re the ferritin. Have you had a colonoscopy? I did and they couldn’t find any lesions or leakages... One final snippet, I find that life is like a set of weighing scales, we need to work to being balanced but most of the time, that is not possible, and when the scales begin to tip in one area, it tends to bring an avalanche of issues.
So... find your equilibrium 😁😁😁
You know where I am, ensure that you have some alone time each day
Thank you so much 🙏 and yes, I have had 3 colonoscopies, 3 scopes, swallowed a huge 💊 that checked for any internal bleeding in my whole digestion and have had my villi biopsied for celiac and absolutely nothing ! No cause for the low ferritin ever found ! I don’t even have any polyps !
They also found nitrites in my urine but this year it has only been leukocytes ..... it’s mind boggling trying to work it out 😕😕.
Thank you so much once again - everyone’s support has meant so much to me. x
I left a long reply to you last night but it has disappeared!
I won't go through it all again but trimethoprim should never be prescribed to people with lupus or suspected lupus as it causes flare. Look in the information leaflet in the box or Google it. Not many doctors know this. Trimethoprim might be driving some of your 'lupus type symptoms." Although you have not been diagnosed with lupus you are being investigated, I suspect you need to discuss this with your GP.
Hi happytulip! Wow, I didn’t know this ! It seems to be the only antibiotic I ‘get on with’ as I had an allergic reaction to Nitrofaurin and they will only prescribe Co-Amoxiclav rarely due to C Diff. I was on IV gentamicin in hospital.
I’m concerned that as I haven’t had any lupus diagnosis or any concrete referral the GP won’t listen to me about the Trimethoprim especially as I said it suited me ! I’ve also been prescribed Ciprofloxin if the Trimethoprim stops working but I’ve looked at the side effects and some look scary ! At least I have them as an emergency!
Apart from anything it’s costing me a fortune in prescriptions but I really want to avoid being hospitalised again 😕.
Thank you so much for your advice, I really appreciate it and I’ll discuss this with the GP !
Many posts on here relate to me being in hospital on IVabx for kidney infections. I'm been on gent, co-amox, cipro. You name it I've had it.
Ciprofloxacin could get rid of it completely but you might need 10 days instead of the regular 7.
Just a thought for the future, if you do get a diagnosis of lupus and are started on hydroxychlorquine you cannot take hydroxychlorquine and Ciprofloxacin at the same time as it causes "long Q5 Syndrome," which is basically an arrhythmia that can literally cause you to drop down in cardiac arrest. It is something that I knew but my Rheumatologist who is absolutely brilliant did not know. I had to tell her, she looked it up and found it to be correct. So just be aware of that for the future.
I had to stop my hydroxychlorquine for the length of the course of the cipro that I got put on and then restarted it a week after the cipro had finished.
It is well documented about the reaction between trimethoprim and lupus and if your doctor has thought in the past that there might be a chance of you having SLE then I would encourage you to call them and at least discuss it with them. There might be something that they can switch you to that is more effective. I had absolutely no side effects with Cipro and it got rid of my infection in 2015, it was a rogue GP who messed with my meds that made everything so much worse.
Remember that they have to list the side effects of all medications but not everyone gets them. Just a thought
Thank you so much happytulip for this really helpful information and that very important advice about the interaction between hydroxychlorquine and ciprofloxacin - I have a heart arrhythmia anyway so I’m so pleased I know about this now, thank you 🙏!
I will definitely discuss this with my GP and the Trimethoprim aspect.
Yes, you could have lupus, but low (or high) thyroid can wreak havoc on your body since the thyroid is a master controlling gland responsible for regulating many things in the body.
I am curious as to why you have unmedicated thyroid disease. Anyone who has thyroid issues needs to manage it aggressively and usually take medication for life. The longer it goes untreated, the more your body will spiral down until you can get very serious problems from this.
So talk to your GP about getting treated for the thyroid issues. It's dangerous not to and could explain a lot of your symptoms.
Thank you so much AimeeA. An endocrinologist nearly put me on levo in 2015 but as my FT3 just came back into range on the ‘ultimate’ test he changed his mind ! I was very disappointed ☹️ autoimmune thyroid disease is still not really understood or acknowledged by a lot of GPs which is so disheartening and frustrating. My GPs are kind but have referred to my health as “complicated” - a somewhat disappointing ‘diagnosis’ 😐...... !
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