Update: to have lupus or not have Lupus... - LUPUS UK


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Update: to have lupus or not have Lupus...

Apricot100 profile image

First of all apologies for the delay in getting back with my update.

Quick back history - I'm a lupus patient in Leeds. Been so for about 3 years. Gone on about 3 trials and Tried a handful of drugs. Last trial had my last infusion presummer and we assumed if hadn't worked. 6 month review with rheumy and I saw an incompetent rude Dr who told me blatantly (as the handful f drugs hadn't worked) I didn't have lupus, gave me a leaflet on fybro, said it was up to me whether I continued on hydroxy or not, and left. While the nurse sat open mouthed at his behaviour and 'suggestions' ie: if you're tired stop drinking coffee - I'm fatigued and haven't had caffeine for 20yrs etc!!

Anyhoo, move onto my fury 're the appointment, threat to complain, knowledge that nurse has already escalated it of concern, and you guys' advice. I was swiftly given an appnt with the big rheumy boss.

He sat looking rather uncomfortable, waffles loads but said in a nutshell that I absolutely do have lupus. He couldn't really explain his colleague's behaviour but he didn't appear surprised so perhaps wasn't the first time he's had so sort out a situation such as this. I explained, as I had previously, that I have actually felt lots better since just before my last appointment. Boss guy believes the infusions are working (Can take up to 6 months to kick in) so fingers crossed and will monitor situation.

So I now DO have lupus and latest drug DOES seem to be working. There's good and bad guys out there, we seem to get the whole range don't we 🙄.


6 Replies

That must be a relief x

Apricot100 profile image
Apricot100 in reply to Lupiknits

It's taken me a while to come to terms with the diagnosis (again!) And to calm down about the previous consultation.

I think there are very few, if any at all, people on this forum who haven't fallen foul of a 'specialist' with limited lupus knowledge. Xx

There's always one......or two......

Even though we've all been through it - it never makes it right. I've had lupus for 41 years - and there's always the occasional ignorant, lazy bully who somehow managed to make it through medical school and manages to corner us as victims.

After all these years I don't know why I still become so shocked when I come across them - but I'm consistantly floored it and the power discrepancy that goes along with the whole process.

I've come across some Doctors that looking back - I'm convinced were the real thing - utterly psychopathic. Devoid of empathy and sadistic. I know I sound a bit deranged and gothic at this end - but they do lurk in the medical system.

I'm from Australia and years ago they took to psychological testing of pre - medical students in part (?) to stop this kind of stuff. I vaguely recall they gave up on it in the end. 🙃.

I hope you recover from the shock soon. I know the feeling well. The last thing you need when you're sick and uncertain is being dependent on not so lovely people.

Very glad to hear that the senior Rheumatologist put things strait and stopped the monstering.


Thank you! Just shocked experiencing briefly what many people on this forum have experienced for years. Eye opener xx

You might be in Luck -

Brand “new” Study of Lupus & Caffeine-

Good for Us - Who Knew?



Apricot100 profile image
Apricot100 in reply to Djlr

Ha! Not me, not touched a drop for 20 years as it makes me very ill. But interesting study all the same. Thank you.

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