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Pamela b
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Discussion Starter #1
Hi
Recently diagnosed with SLE and awaiting meds.
I have a really terrible weekend not being able to sleep for terrible crippling chest / lung pains. Nothing helps to stop it not anti inflamatry or paractemol.
Today I have had trouble passing water ( this happens often ) and have started to have a really painful nagging pain lower back my left hnd side. My urine is sort of smoky and dont think that it is normal. My doc says that he cant help as I am under a rheumy and that guy is in clinic all day and not contactable, and he couldnt even see any point in examining me as he couldnt treat me anyway.
I have also got a burning sort of rash on my cheeks which makes me look like a clown ( lovely ) but I dont have a smiley face.
My last urine tests were fine except low serum creatinine and hgigh serum union gap ?
I rang NHS direct and they told me to contact my doctor who told me he couldnt help and I am sat here crying in pain
Do you think I have a kidney infection or should I play a wait and see game ? I am confused, feeling very sick and shattered thorugh lack of sleep
So sorry but maybe someone can help as the medical profession dont seem to be able to at this point in time
Thanks all relying on you yet again
Pam
 

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Pam, I suggest you phone the out of hours GP and ask to be seen, if they wont see you go to A&E.

It is absolute rubbish that your GP cant help or treat, at the least he should be taking a urine sample to test!

People without lupus get UTI's etc!

You need help so go and get it!
 

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pam

poor u why do u have to wait for meds if u have been dx.
Sorry u r having a bad time. get on to your GP again or go down to A&E

all the best

dixy
 

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Definitely seek emergency care if your GP won't see you. It's insane that he won't even test you for a simple UTI, bladder infection, kidney stone, etc. Just because you have lupus doesn't mean a GP can't investigate things that come up too!

It sounds to me like it is some sort of UTI type problem, combined with a lupus flare up. Infections will often trigger lupus flare ups but you need to be investigated more thoroughly.

Hope you've sought out help by now! Let us know how it goes.
 

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Pamela b
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424 Posts
Discussion Starter #5
Thanks

Hi
Went to out of hours Gp and have urine infection. Gave me antiobiotics and said he had no choice and wants my urine tested again in the morning and also temp is very high Not to hesitate to come back without calling what ever tme of night
Said he could see why the relucance to prescribe in case as it is seen as interfering but this was totally not an option.
Thanks for your help on this, what ever would I do without you all
Pam
 

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I am most relieved to hear that you did get that sorted and you did well to insist!

Although my rheumy is wonderful I don't know what I would do without my GP. He is a lovely man who always has time (even with a full waiting room) and who never hesitates to treat me, he really doesn't care about treading on anyone's toes. Of course he is very careful with meds and if he has any doubt looks everything up or calls my rheumy.

It is truly mad that your GP said he couldn't do anything for you. There are so many things that can and "need" to be done in between rheumy visits.

love and hugs :hug:
Katharine
 

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So glad you saw someone!

Amazing what a simple uncomplimented urine sample can show, your GP should be truly ashamed at not doing one for you! Your GP should have no problem issuing anti-biotics for any bacterial infection and first and foremost was lacking in duty as a GP in not checking out your health.ur GP is there for general care, and if they need help on the Lupus side of things then they can simply pcik up the phone at speak to your rhuemi direct much easier than you can! If it were me I would let the Practice Manager know what has happened regarding your lack of care!

Hope the anti-biotics kick in soon....what one did they give you?
 

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Hi Pam,
That is a load of garbage that you can't be treated by your gp. I think it may be time to rethink who is in charge of the coordination of the team.

I found out last week that I have kidney & bladder infection and protein and blood in my urine. This was dx by the oncall internal med specialist. He had NO trouble taking me on for care. So, that your gp would not help out and could have potentially caused more damage by the refusal, to me would not be acceptable.

Hopefully you are feeling better soon.
Sally
 

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Hello Pam

I am so glad you persisted and hope the medicine works fast. You need to get another GP urgently. This has got to be one of the worst practices in the whole of the UK. It is not only crazy to say that once you have a specialist your health care is out of the GP's hands it is patent rubbish and " failure to provide care". I think the pair of them should be reported to the PCT and to the General Medical Council. It's beyond belief. This is the sort of thing that can end up being read about in the papers

The stupidity of that notion doesn't bear thinking about. In the UK, GP is our first port of call whatever is wrong with us after diagnosis and a good GP will contact the specialist if he thinks it is a lupus related problem. Unfortunately we are not exempt from the myriad of troubles which have nothing to do with lupus.

Try to contact the consultant's secretary so you have some agreed way of contacting them if need be in connection with the lupus treatment.

I would say the out of hours GP said that about not wanting to interfere, to sort of cover for the other GP's manifest failure

Get well soon

Many hugs
Clare
 

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Pamela b
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424 Posts
Discussion Starter #10
Changing GP

Hi
My husband and son both say I must change GP, in fact we all must but I just dont feel strong enough to face a stanger.
I ams till in pain, can pass a little urine and will just have to see how it goes.
My clown face is itching madly today and my daughter says it looks like someone took a red brush and paintde my cheeks.
Back at Rhemy at end of June with nice letter explaning that the tests will take that long.
Have decided I cant continue to go to work as I face a sun filled windoww and wonder if this is where the problem came from ?
This is a rational decision and am hoping maybe the Rheumy will help me, any experience any one of doing this ? I only am 5 years from retirement and dont need the money, although I like it !
Pam ( feeling like Pamela today )
 

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Pam,

You really should not be thinking of ever seeing this GP again, he is completely incompetent and dangerous!

Please seriously considering re-registering with another practice. Also report him, so he cant do to others what he did to you!

So much easier to see a stranger ndget help you deserve than see someone who should not be practising!
 

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Hi Pamela,

Instead of retiring have you considered asking your employer to change the location you work at? If that is not possible ask if they could accommodate you by putting film on the window or some type of window covering that would block the sunlight. It might be worth a try.

Take care,
Lazylegs
 
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