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 unfortunately not, it's basically down to bloods, which I have just found out are fine. 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.

12 Replies

  • Who did you see at Guys? I have Professor D'Cruz and he was brilliant, but then I already had a diagnosis. He was so thorough and checked stuff that no one else had. He even re-did my thyroid bloods and got my thyroxine increased. I'm back there next week.

    Will your doctor keep looking into it for you to find what's wrong?

  • I really did want to see Professor D'Cruz but I saw someone else who is suppose to be an expert in Lupus don't want to name publicly. Hopefully my G.P. will continue looking but I'm guessing Guys will discharge me.

    Thanks for your response :)

  • I can't advise you on your medication, but -

    Idiot Doctors can exist in all departments, even prestigious top notch one's. (I've met one or two in high places myself)

    I'd recommend continuing a search for a better Doctor. Perhaps seek out a broad knowledge, top notch Generalist specialist (Consultant) ? as well as another Lupus Specialist.

    The fact that chloroquine helped you should not have been written off as incidental / or a placebo effect? - Unfortunately some Doctors believe in this concept, especially if they can't quite figure out whats going on.

    Finding an answer is sometimes a slow, scary and frustrating process of elimination & that includes eliminating Doctors who show little interest in listening or helping.

    Find a Doctor who respects what you're telling them.

    Don't give up on finding a diagnosis !

  • The thing is I didn't realise that Chloroquine was used to treat Lupus, I took it for 8 weeks as I was going abroad and after about 4 weeks I started to feel well, it was only when I was raking my brain as to what I'd done differently during that period and the only thing different was chloroquine, I then found out it is used to treat lupus.

    I really have reached the conclusion that there seems to be no point in trying to find a diagnosis and to take my health into my own hands. I really didn't want to give up but I'm too ill to keep searching and I'm on the verge of loosing my job :(

    Thank you for your encouraging words though :)

  • Hi Calrie67. I'm sure you're feeling despondent at the moment but, as the others say, don't give up, there are doctors out there who can see past the blood tests. I have a very longstanding Dx of Lupus based on clinical presentation and a few 'clues' from blood tests. I was referred to a Professor a few years ago as my new Rheumy wanted confirmation of my dx. Again, most blood test results were unexciting and inconclusive but she just knew that I definitely do have an auto immune Rheumatological disease so treatment continues. Keep searching for those answers x

  • Hi Clare, I have a diagnosis of uctd, based on symptoms, have a wonderful rheumatologist & been taking mepacrine for almost a year. At last appt he said my bloods were 'inconclusive' - I took this to mean that they were all negative - does inconclusive mean something different, pertaining to blood tests? Thanks x

  • We hear you Calrie, we do. We know what you mean. I was there not so long ago as people here will attest. I was down and out, came on here like you, and with all the support felt energised and found a close Lupus sPecialist from here and went to see her. So try again honey. Keep trying. This is a complex disease which needs understanding and treatment. Please dont self medicate. Please continue to see your GP and tell him how you feel. I am sure you will get support in the short term as you search for an answer. Find another specialist. One Lupus specialist doesn't make a summer, or somesuch!!

    Please feel the sympathy support and love from here. We know we support you we have been there. Unfortunately one diagnosis is often just the start with us so gird up those loins girl. Dig deep and dont give up.

    Lots of best wishes, lots of hugs. You are worthy of care aren't you? Of course you are.

    Take great care


  • Thats very dismissive without hydroxycholroquine you would have had positive bloods after some time i did. Monitoring seeing how are in summer etc would help.

    I changed to different hospital im diagnosed as uctd now.in lupus clinic raynaunds fibromyalgia.arthritis.

    Its hard discease diagnose sorry hear your experience i self medicated in past when gad bad gp refused help said in my head.

    Im lucky i didnt damage my body from doing so would never do again ever.

    Persevere hun.

  • Hi calrie67,

    I agree with the other members of the community and would urge to please not give up trying to get a diagnosis and please don't self medicate as it could be potentially dangerous.

    I'm sorry to hear that the doctor you saw at the lupus clinic was quite dismissive. It may be worth asking your GP to refer you to another specialist for a second opinion - either at that clinic or perhaps at UCLH, which is also an excellent lupus centre.

  • Hi Calrie67

    Try not to lose hope I have had the same problem with Myositis I have lupus but was having terrible trouble with my legs couldn't get upstairs or walk more than ten yards the doctor kept saying it's the lupus or your bloods are fine. After much pushing I got a doctor to listen in Rheumatology and they done a biopsy and low and behold I have a lap over condition called myositis and now I am being treated for it. So please try another doctor don't give up hope of getting a diagnosis. My thoughts are with you I know just how frustrating it can be.

  • Hi I don't know where you live but I had a lot of trouble getting a diagnosis too. Well actually I was first diagnosed with auto immune hepatitis and was still so Ill I knew there was something else going on.

    Eventually I went to a Rheumatoligist is Sheffield. At hallamshire hospital. He is very good and they also have a lupus nurse.

    It is terrible when you can't get a diagnosis. I was 23 when I first got Ill. It was a scary time. I was completely wiped out by it all. No one believed me, not even my family which made things worse.

    I was 33 when I finally got a diagnosis. What a relief that I wasn't going crazy!! I was even sent to see a psyche doctor. I told them I was depressed because I was ill and couldn't get a diagnosis. Strangely they actually believed me.

    Also I looked online a while ago and found private doctors in London who deal with auto immune diseases and also look for underlying virus's l, bacteria etc. That might be worth looking into if you can afford it.

    You will get the answers eventually I'm sure. It's best to have blood tests when things are flaring up. Good luck!! I hope you get answers soon

  • Thank you all for your supportive replies :)

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