LUPUS UK
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Kidney Infection

Evening everyone, hope today has been somewhat kind & gentle on all of you. 🤞🏻💛

I've been trying to write this post all day! Battling through the pain..

Anyway, I managed to speak to my doctor today. She couldn't fit me in to see her, but she could talk to me over the phone..

I mentioned my agony in regards to my side/back pain before & after urinating & *foamy dark coloured urine, * passing what seems to be dark coloured skin tissue * bubbles in the pan* radiating pain around my side that doesn't ease with painkillers, * feeling sick & Sweating more than usual. I'm waking up at night weeing loads, sometimes I urgently rush to the toilet for only a trickle to come out. I sit on the toilet & wait until I can wee. The pain is terrible.

She said she'd leave me some antibiotics as it sounds like I have yet another kidney infection & a possible stone. I passed a stone on NYE 16/17 it took 5 weeks & I did it at home I was told I could get another in 5 years not 7 months later!

Dropping a urine sample into my Surgery tomorrow as requested.

I've been asking for her help for 3 weeks. Just a shame that I had to break down in tears for her to sympathise with me.

I have been given a weeks course of Trimethoprim Oral Suspension antibiotics.

I spoke to the pharmacy this evening & they haven't got any in. & they haven't & won't have any more for a several months.?! Apparently all surgeries were made aware of the shortage..

So as I cannot have them I now have to try and get hold of my GP to see if she can give me a different antibiotic.

At least she listened this time, just hope I can sort this issue out & start the antibiotics because it's been 3 weeks of chronic kidney pain. & infections to me seem to be 💯 % worse than just a simple infection.. my whole body goes down with it.

When it rains it pours.. 😞

21 Replies
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Be cearful I had uti/ kidney infection last yr ended up I hospital with sepcis! If it's bad go to walk in center or a and e

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Thanks for your message Ianrussell69

Jeeez! Sepsis! That must of been terrible for you 😱 I'll keep a very close eye on it.

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I agree with Ianrussell - this GP sounds hopeless and your kidney situation sounds awful! I'd bypass GP and go straight to A&E and explain today. You shouldn't be having to cope with kidney infections and passing stones all alone in this way?

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I received neutroforamin from hospital, a strong antibiotic that helped me heal from sepsis with a severe bladder infection rat went to far. My prayers for you, yes pls go to hospital. Julie

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Hey Jewel8888

Oh my gosh !!! I totally feel for you, you must of been so poorly 😞. Is that a IV antibiotic as it does sound like a majorly strong one.

Are you all healed now ?

Thank you 🙏🏼💛

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Nitrofurantoin, is the antibiotic. sorry for confusing it. My urine had floaty stuff, my blood pressure was very high, and had terrible attacks in my lower abdomen and kidney pain. i am truly sorry you are so ill and not getting adequate treatment. We are complicated and we already wait before getting help for that reason. A trip to the after hours clinic is a must, please go. The antibiotic I had was capsules, and it felt like they were eating a parasite inside me. i happened to be at hospital two days later for some papers, the attendant made me go back thru with a very talented dr, he ran the blood tests, gave me iv transfussion, kept me on the antibiotic I started. After this happened, rash all over. seafood allergy started. I was diagnosed with Lupus. I am much better now, I get my urine tested regularly to be safe. I recently had to take prednisone again for eye problems, it makes Candida come back so will have to keep up with that now. Twitchytoes recently recommended i post more here so will be around, I'm in US. Keep us posted, will be thinking and praying for you.

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Hey twitchytoes,

I'm taking a trip to out of hours this evening. The last time I had a kidney infection I waited in A&E for several hours to see a doctor. Was given antibiotics & sent home.

But out of hours is a better option.

Thank you for saying that it is bloody difficult to do it alone.

Another GP from my surgery has prescribed amoxicillin ? She said it's not as strong which I'm

Well aware of as I've had many different antibiotics this year. Even if I finish the whole course of suspension I know (which sounds big headed) but it's become predictable that I'll need another stronger antibiotic.

Just palming me off I think.

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I saw out of hours for a UTI and then again for the rather devastating effects of the antibiotic, Augmentum. The trouble is that we are such complex patients that we really need someone who understands autoimmunity and who can treat and refer appropriately. I'm very lucky now to have found this but it did take at least 3 relocations and some dreadful experiences on an acute ward in a small hospital plus some truly useless GPs before I finally arrived at where I am now! Best of luck with out of hours. If at all possible I'd try and find a much better GP.

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Hi Laura

So sorry to read of your awful kidney infection. My U. S penfriend who has lupus had recurrent kidney stones which was agony but eventually it all calmed down and she no longer suffers!. Do hope you get those antibiotics sorted out. Your GP should have known about the supply problem and given you different ones as time is of the essence!. I think you should change her as she doesn't sound good but when your feeling better. Good luck today for Gastro appt. hope it's helpful. Take care X

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Hey misty14 how are you Hun?

It seems never ending doesn't it.. aww bless your friend it's horrible!

My GP giggled when I called her about prescribing another antibiotic. She said "oh amoxicillin will be ok Laura , it's not the strong sort but they use it in pregnancy" it's also very costly on the NHS to give out strong antibiotics for free" I don't understand why she thought that would relate to me, & I totally understand it's costly but I'm ill!

The pharmacist said the only strong antibiotic they had was £500 a bottle if I'm willing to pay. My dad was livid!

I am changing surgeries. It will be the best thing I have ever done x

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Hi Laura

I've taken amoxicillin ok. Hope your starting to feel better. Best thing you can do is change surgeries. You won't regret it!. How did the Gastro appt go?. Helpful I hope. I've just had good news about my foot being healed after 6 weeks and now leg nerve pain returning after successful injections so it really is never ending but thanks for asking. Keep us posted and take care. X

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Hey misty14 thanks for getting back to me,

I haven't started the antibiotic's as the pharmacy had to order them. So I won't get them till Monday.....😞

I'm ok, just juggling kidney pain as well as gastro!

I put up a post about my gastroenterologist Appointment. Very positive & good.

Glad to hear your good news, & nice to know the injections worked. I wish you all the best & hope your healing, slowly but surely. 🎢 xx

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That's tough having to wait for the antibiotics till Monday Laura. Will look for your Gastro post , glad it was positive. Maybe tide is turning for you!. Take care. X

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I'd change surgery - Your gp sounds useless!

Not very helpful right now I know, so since you're still under this useless gp I'd go to A&E. Explain the situation.

And when you're feeling stronger, I'd definitely change surgery asap.

I hope you get help and relief soon, please let us know how you are. X

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Thank you soootired! Your name relates to how I feel💙

Yes I agree, they've prescribed me amoxicillin suspension. Not the strong stuff.

I am changing surgeries, this GP is the devil!

Thank you xx

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Trimethoprim should be avoided in patient with SLE. I know your diagnosis is abit unclear at the moment but trimethoprim is probably best avoided. I can't fund the link but I think if you Google it, it should come up. The John Hopkins centre had info on which antibiotics lupies need to avoid.

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Hey happytulip,

Thank you for letting me know, each course of antibiotics I've had this year comes in suspension- side effects are rotten with a liquid! I will take a look. Hope your ok xx

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I had augmenten! Had to stop ✋ taking it as it made me vomit. I'm also allergic to Doxycycline

Sounds like you've been in the wars ! If you don't mind me asking what devastating effects did augmenten have?

I wish the professionals were more understanding like you twitchytoes.

It really is about finding a doctor/specialist/consultant who knows all about auto immune. Not some one who's gunna mask the problem without finding out the root cause first.

Changing GPs is a priority. X

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Hey jewel 💎

Ahh ok, I've never heard of it before that's probably why I was confused. Mine too ! I've always had low blood pressure but for the past several months it's sky rocketed ! Thanks Hun, i know I shouldn't say I'm used to it, but I am. I have been booked in for 8pm this evening to see an out of hours doctor.

Oh my lord! That sounds absolutely horrendous! You poor poor thing! Jeez so those antibiotics caused all that! Definitely understand the devastation. My word! & I thought I had it bad... I'm glad to hear your much better now.. (huge sigh of relief 4 u) that's kinda like A real eye opener!

Yes please post more here, & thank you for messaging & sharing apart of your story with me. It's incredibly strong of you to endure all that & then have Lupus on top! Jeez I take my hat 🎩 off to you! Aww ditto xx

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Hi LauraMk30,

Hope you are feeling better. I feel your pain. You have had fantastic advice. I can only add, I was amazed you were only offered trimethoprim with your history, its baseline antibiotic for UTI.

Currently, I am in bed suffering with horrible UTI. I've had them before. This is different experience. Been rather alarming, as I had the worst abdo pain, a feeling of utter pressure down below, (as in giving birth pressure!), bowel noise like a factory churning sound... ugh... same time, my pain from recurring prolapse discs flaring, whole spine is inflamed, yet I'm allergic to anti inflammatory meds!

I was in such a state, Thursday, and yesterday, the only relief was to sit in warm bath. Walking was harsh, sitting too. I could lay flat on my back, but, have to ensure spirit doesn't take a low dive into despair. So, my daughter offered to cook tea, only downside, I had to go to her home.

Half way thorough meal, I had increasing pain, (sitting), nausea, temperature, I left the table crying. Very unusual, I hate my family witness my pain.... my son, there also, phoned 111.

111 were my saviour, offered me out of hours appointment later. I thanked them, hoping I could hold out... within a minute of putting phone down, 111 phoned back, asked would I like to be seen earlier!!!!! Oh, yes please!!!!! Oh, thank you!!!!

Son drove me straight there. I was half an hour early! Yet, receptionist met me at the door, gave me the necessary, escorted me to loo. I think I looked as ill as I felt. She told me not to lock door, she wait there... I was shivers, shaking, unsteady on my feet, but managed sample. I came out, the Dr, yes, the Dr! Immediately escorted me to his room.

UTI, temperature, high BP, flare up spinal disc pain diagnosed. Actually GIVEN BY HAND, a box, of Nitrofurantoin antibiotics. Told go home, rest, take meds plus paracetamol for reducing temperature.. phone 111 any problems, 999 any deterioration.

Thank you, thank you, what an out of hours experience. If this is the promised land, future of NHS service, yes, I love it. Moreover, I appreciated it, and we all need it!!!!

So, I managed a 2 hr, then a 3 hr refreshing sleep last night.

Not out of woods yet, but hopeful I will improve. I was so, so delighted, and relieved, to note, one reply to you here, says the antibiotic I was given (he did look in BNF before prescribing), is very good, should stop sepsis occur... (My one yr old granddaughter was very sick with sepsis due to chickenpox complication. Nasty infection). I dread that I get an infection that takes hold to such a point. My Mother died unexpectedly due to infection taking hold. That's why infections must be addressed asap.

Glad to hear GP change for you. Take good care of yourself. We each know, if gut instinct tells us we cannot wait, we must fight to get the medication we need, when we need it.

Thanks to everyone HU. Sharing and caring helps us stand up for ourselves.

Hero's like the team I had last night, must be an expectation realized by all in need.

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I had a kidney infection. Just saying it gets better. Not very very soon, but it'll turn out.

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