I had my first appointment at Guys Lupus clinic a couple of weeks ago and I was very disappointed, I guess I was expecting something different from normal rhuematology depts but unfortuantely not, it's basically down to bloods, which I have just found out are fine. The doctor didn't even take a history in terms of my family/childhood etc. I tried to give him a detailed description of my many symptoms but I really don't know why I bothered if it's just down to the bloods.

The doctor even thought that it was incidental when I said I felt better ( energy, aches, throbbing, brain, head sores etc all better ) after taking a recent course of chloroquine.

I am now giving up on getting a diagnosis and will self medicate as I cannot continue like this, I have found a source for meds but if anyone can recommend please pm me.

5 Replies

  • That's very sad to hear, it is part of rheumatology now so not as autonomous as it used to be when it was in it's own unit at St. Thomas. If you don't feel your treatment was adequate you can obviously write to the hospital, so please do consider that. I would not recommend self medicating at all as that could be very dangerous, don't give up as there's still things that can be done to get you the help you need.

  • I have contacted the clinic and told them about your experience and they said the following: "She should absolutely feedback officially via PALS or directly to our new Service Manager Miranda Willis We would be happy to speak to her to address her concerns".

    I was correct in that a history should be taken so I would definitely send in your feedback on your experience so that this can be investigated. This will obviously help address your concerns but also make sure it doesn't happen again to anyone else. Thanks.

  • Thank you for your reply but I just feel it's a bit pointless complaining if my bloods don't tell him anything, I have had positive results ( he didn't have them ) in the past but I wasn't having a flair when I saw him and coupled with me taking chloroquine recently it didn't surprise me that they were negative. The doctor felt that the positive effects I experienced after taking chloroquine was "incidental" meaning a placebo effect, however I took them for a holiday abroad and after around 3-4 weeks started to feel well for a good few weeks, it was only when I was trying to think what I had done differently during that period and the only difference was the meds, I then research them and found what other things they are used for which I hadn't known before so definitely not a placebo effect! I did advice him that I would continue taking them if my bloods where negative and his response was that in high amounts it could be dangerous. I have now got Plaquenil 200mg and will not take more than the recommended dosage and if I don't see any improvement then I will stop.

    Thank you once again for your intervention on my behalf :)

  • Wow... So just because tests said no I don't have it, I could now? This should be on my file! I hate western medicine! Grr! ... Anyways.. Check out my post on groundbreaking news that might explain something that triggers lupus.. It's a huge deal! Pls! Check it out, leave a comment, let me know!

  • calrie67 should complain. I have a friend who was also treated terribly at this clinic. The Doctor refused to look at history and tests brought from other hospitals showing positive results, would not listen to anything she had to say, dismissed the blood test that was ordered and came back positive saying it was not and then discharged her saying she was very healthy! Then sent the WRONG blood test result to her GP! A complaint was made to PALS 4 months ago but they STILL have not sent an outcome. Talk about cover up!

    The standards at this clinic have dropped so far now since merging with Rheumatology that its now not worth the bother of going. They somehow think that antibodies that are negative miraculously mean you are cured of your disease! This is a backdoor way of culling patients from their lists because they don't get as much money seeing follow up patients as they do from new referrals.

    Miranda Willis needs to give the whole place a good shake up, preferably with good Doctors to replace those that have left because they can't stand the politics, or expect her desk to be very busy with complaints!