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    LUPUS UK
    20,825 members • 16,533 posts

    Frustration

    I am aggravated with my customer service at my doctor's office. I've been going to the same doctor since 2012 in which I've stayed because she is suppose to be the best around here. However, I feel like she does not take as much time with me and her nurse have the worse attitudes. She says I don't have a severe case of Lupus. This may be true but I still have flares, protein in my urine, Connective tissue disease, inflamed pancreas, vitamin D low and the list go on. I just feel like they see me and take lab work every 7-8 weeks for the money. I hear the same thing. Does anyone feel this way other than me?

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    If it helps, if you don't have organ involvement, like kidney damage, it is classed as mild lupus. It doesn't mean you don't have all the problems. I have had lupus since 1998 but my GP's are excellent and don't dismiss it as trivial. In fact they are very proactive. They are experienced people and knew me before I had Lupus so see the difference.

    Gp's are also given just 10mins for consultations unless like mine give me double appointments GP's are under pressure.

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    GPs are under a lot of pressure, only this morning in the news I heard that in certain areas GP surgeries are closing the intake of new patients. In my opinion a wise decision! (I'm fed up of going to doctors after being told no appointments, but when I do walk in its full of the same old faces, sitting having a chat, or only wanting a repeat prescription) I was diagnosed with lupus early 2015 after about 18 months of suffering severe pain with my skin! GPs thought it eczema, psyorisis, prescribed various creams but then had an allergic reaction (or my body just screamed out - this is not it). Demanded at the surgery to see a GP (the receptionists are only doing what they're told to do at the end of the day, so I was ashamed of my ranting at them & I did apologise) but saw a GP things started moving & now I couldn't ask for anything more from my GP! (The receptionists still a problem, but if they're not told things they're only doing their job) You build a relationship up with them (the GP) & mine will spend as much time as it takes to talk to me! I never feel as if I've only got 10 mins! Same when I see rheumatologist or dermatologist , if I need to talk & take time to explain things I'll do so! Appreciate the time slots but never feel pressured to make a garbled comment! They're there to help!!!

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    I wish I could say the same,... I am always on a time frame .

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    I am sorry to hear that & personally I think it's so wrong!!

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    My Dr is chief of staff around 40 years old..I have her phone number and I text her and she gets to me right away. I am 62 and have had lupus for almost 3 years..I had hemolyic anemia and I was put on steroids for 3 months and praise God that is the only bout of lupus I have experienced. I am on plaquenel twice daily. Good luck

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    Thanks and I wish

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    How are you doing randa lupus?

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    Hello, I had a really rough week last week but feeling much better. Thank

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    If you have protein in your urine and have an inflamed pancreas, I hope you have access to a Lupus Specialist or good Rheumatologist. GPs are not the appropriate Doctors to be managing Lupus by themselves.

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    I see a rheumatologist every 7-8 weeks that is who my frustration is with.

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    Yes I see a lupus doctor ever 7-8 weeks, which is who I am referring to

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    An inflamed pancreas and protien in the urine is something that should be emediately investigated with Lupus. If any of your current Doctors are not now actively involved in looking into these two things - then you need a new set of Doctors. I had a very high status Rheumatologist who was absolutely hopeless with SLE Lupus that effects the internal organs. Too busy looking for inflamed joints etc.

    It does sounds like your regular pathology tests mean that they are watching what is going on, but If with a bit more questioning you find that your Rheumatologist isn't actively practicing preventive medicine, please consider seeking out an actual Lupus specialist and/or renal specialist for a second opinion. Even a good generalist specialist can sometimes be more helpfull when it comes to internal organ involvement. While the kidney and pancreas problems may not be severe now, you need Doctors actively dedicated to preventing these problems becoming worse.

    If the Lupus is effecting the pancreas - that is definately not something to sit on your thumbs about. It requires emediate attention. Next time (ie as soon as you can) you see the rheumatologist, ask her what is she actually doing about these things. What is her preventative medicine plan? Tell her you require an honest answer. An appalling bedside manner doesn't nessesarily mean she's not doing her job. Unfortunately the horrible ones are quite often the most competent ones and act the way they do because they take on too high a patient burden.

    Just refuse to leave your chair in her office until you get the answers you want.

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    I wonder if you go to the same rheumatologist as me! I was diagnosed given no information told him I'd been to A&E with chest pains a few months before, he just said it was part of the Lupus. I was given a prescription for Hydroxychloroquine and told to have an eye test and shoved out the door. I had to fight for my next prescription, 4 phone calls and 35 mile round trip to pick it up. Had to fight for my next appointment, which he told me he was making for me the first day I saw him but clearly didn't.

    My GP luckily is brilliant and has put in a referral for me to go to the Louise Coote lupus center in London. Just waiting for it to go through in the mean time I have to ho back to the other one 😔

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    Ha, I doctor is a lady... She makes my appointments accurately and on time. However, they seem to be a waste of time. She looks at my lab tell me the same stuff as last 7 weeks and then she only spends about 5 minutes with me and that is it.

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