Infections doctors conflicting and would love som... - LUPUS UK


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Infections doctors conflicting and would love some advice


Hi everyone I haven't write a blog before but often read all others for support and advice. I'm currently in quite a bad flare and have been having hot sweats and temperatures and have extreme tummy pain and pain in my lower back. I have been to the gp loads and I have been to A&E but I keep gettin palmed off with antibiotics for a water infection but my water is always clear went sent off. I went to have my ritixumab treatment on wed and I'm in desperate need for it but got refused as my bloods show I have an infection somewhere but the rheumy won't touch me and sent me to gp who looked at me as if I was stupid and said its probably my lupus and didnt have a clue. I am now drippin with sweat and rolling the bed in agony and don't no what to do. I don't no whether to go to A&E again but is this pointless I want someone to take charge. My specialist nurse told me tht it looks as I have something really serious goin on and I needed to see a surgeon but my gp needed to orgainse it but she won't as she feels it unneasasary I'm so scared of the damage that is being caused. Any advice and support will b much appreciated I'm in turmoil and have no life

7 Replies

Zoe, I am soo sorry hear how much pain and distress you are in, it just isn't fair. Would there be someone you could take with you to the gp for some moral support? The only way I made any progress is I decided that I wasn't going to leave until he came up with something that moved things forward satisfactorily. I wasn't aggressive, but I just imagined I had glue on my bum...and I made sure I took time to think through their suggestions without being rushed. Whatever they said, I said 'can I just think about that'...and I took my time and if I still wasn't happy I asked another question. I didn't let him rush me I could tell he was getting impatient but I didn't care and eventually he realised that if he actually took me seriously he would get rid of me quicker. Their attitude can make you feel deep down that you're wasting their time...go In there believing in yourself....decide what you want and don't leave 'til you get one should suffer like you are without proper support.

Write down some stuff before you go in and talk slowly making sure she hears what you're saying...

Your waters were clear, so why keep doing down that route?

rheumy said infection but not waters so how we gonna find out what it is?

Whatever she comes back with, ask 'and what happens if those tests come back negative?'...who makes the next step?

Am in pain and this is worse than your usual ones...

Can't take ritixumab until symptoms sorted...

Nurse said I need to see a surgeon, if you think this isn't necessary can you please give me a full break down of why not and tell me exactly what you intend on doing as an alternative seeing as I am still in so much distress and still have an infection somewhere which is stopping me receiving ritixumab?...where is this infection?....what are you going to do?

I can't move forward until you investigate this further I really need this sorted?...

...who is going to drive this forward?

Expect an answer to all your questions....if she tries to rush you through without answering, look down at your notes, take your time and don't leave til she answers them and you are happy with the answer

Looks like the main issue is finding out where this infection is....glue on your bum...don't leave 'til you're happy...don't be rushed

She can't have you physically removed, she'll realise the only way to get rid of you is to take you seriously...keep your voice calm and you will win through.

Good luck Zoe and let us know how you get on...

All the best and will b thinking of you, go girl!!


Just looked up ritixumab...You can't take ritixumab until infection sorted so doc needs to realise that this needs sorting and understand that you are just gonna get even worse without the ritixumab...if not an infection then you can get back on the tablets which will ease some of of your symptoms while they do some more tests....if she takes you seriously you won't have to keep going back...I just don't know why docs can't see this! Good luck huni xxx

Take somebody with you and let the Gp know you are recording the consultation on your phone so you can play it back to yourself when you get home just in case you miss or forget anything they advise - that makes them sit up and pay you attention and take you seriously Good Luck and just be polite but firm :)

Good idea x

Hi zoezoe, Are there any medications that you are taking that might be causing the problem, perhaps a new one you might have just been prescribed. I am very sensitive to medications and have had to discontinue many of them because they cause severe abdominal pain and distress. I am prone to getting thrush and many medications cause thrush in my bowl as well as urinary tract, which can be very painful. secondly, have they taken a stool sample to rule out a bowl infection or offered you a scan? I know its hard talking to gps sometimes because they can be so dismissive, however if you can muster the strength, insist on seeing a specialist, don't move from the chair until you get a result. failing that ask to see the practice manager and make a complaint and insist on seeing a specialist, if you still don't get a result write a letter of complaint to the health authority. I wish I could offer more help. I hope you get a result

I am having the exact same problem, my hot sweats and lots of pain etc were due to an acute urine infection, a sinus infection and a chest infection all at the same time, all which the dr's said it was a coincidence they all occured at once lol, yeah ok. They are being extremely useless and wont send me off for tests even though that seems a bit extreme and my urine is still dodgy. these Dr's are useless and they have no idea how absolutely terrible we feel. they should stop treating us like hypochrondriacs and do their jobs for goodness sake.

I'm so very sorry for your unresolved ill and help they get there finger out of their butts soon for you. Take care and fingers crossed for you :o)

Tell them you're recording the convo as that will make them do better just so you don't sue them lol

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