Is it Lupus?

[rachaelwhyde]

After six years of being treated for lupus a new rheumatologist said "to say it's lupus is stretching it"!

I then asked if he was saying I didn't have lupus? He replied "well I'm not saying that".

Well what are you saying???

I asked him to explain my blood results, he couldn't. I asked him why I had ever been diagnosed if it was possible I didn't? He didn't answer. I asked him to explain why I had all my different symptoms? He couldn't.

He told me to have a steroid injection and if that worked it might be down to lupus and if it didn't then???

Honestly this is the second rheumatologist at the second hospital and both have been useless.

Feel at my wits end!

Any advice greatly appreciated x

[Wendy39]

Hello.

I am sorry to read your post. Sounds like you need more help.

I got my diagnosis with a private appointment. My GP had told me that I had lupus, following my blood tests for it and due to my symptoms. I was referred on the NHS to the local Rheumy and eventually saw her 4 months later. I often look back and wonder how I would have coped if I had had to wait that long with no diagnosis confirmed and no medication.

Anyway, luckily for me my husband had private medical cover with his job and we travelled to a hospital, over an hour from our home and had a 30 mins appointment with a senior Consultant. He confirmed what the GP had already told me - SCLE - a sub set of lupus between SLE and DLE. He gave me a prescription for hydroxy 2 x 200mg a day there and then.

The NHS rheumy then later sent me for numerous tests on my lungs and heart, x-rays of my hands and feet etc to rule out internal organ involvement etc. But I had a diagnosis and I had started medication. The private appointment took 3 weeks to arrange. I saw the invoice for the private appt and it was £180.

I think if I was you, I would ask Paul at Lupus UK to recommend a Lupus specialist in your area. Or consider asking your GP for a referral to the London Lupus Centre. Or a private appointment to speed things along. It sounds like you need more help to get a definitive answer. Our local Rheumies are not often specialist enough.

Good luck! Keep us posted.

Kind regards

Wendy

[rachaelwhyde in reply to Wendy39]

Thank you for the great advice! Would just like to know one way or the other, and if it is not Lupus get to the root of what is causing so much pain and fatigue.

Thank you again hopefully, Paul will be able to recommend someone in my area. Will keep you posted!

[PMRpro]

Seems to me he has no idea about lupus - wanting to use pred as a way of deciding? Other illnesses respond well to pred...

Where are you? I'm sure LupusUK have recommendations for lupus experts and I'm fairly sure that there is a link on Sara Gorman's blog Despite Lupus for suggested lupus experts in the USA - if not, contacting her would almost certainly result in assistance.

[rachaelwhyde in reply to PMRpro]

Thank you will have a look at her blog.

[Paul_Howard Partner LUPUS UK]

Hi rachaelwhyde ,

I'm sorry to hear about your negative experience with your consultants and how they were unable to explain things well for you. Did either of them mention the possibility of undifferentiated connective tissue disease (UCTD) or a 'lupus-like' disease? These descriptions are sometimes given to people who have some symptoms of lupus and perhaps 'borderline' test results, but not enough clinical criteria for a confirmed diagnosis. These conditions are usually treated in the same way as lupus and may or may not develop into 'full-blown' lupus in the future.

If you are unhappy with your current consultant then you could ask your GP to refer you somewhere else. If you let me know whereabouts in the country you are I would be happy to provide you with information about any lupus specialists who may be nearby.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[rachaelwhyde in reply to Paul_Howard]

Hi Paul

No one has ever mentioned them. I was told I had Lupus and treated for that and this new one suddenly thought it was a "stretch" to call it Lupus. I live in Shropshire. I was already unhappy which is why I got my GP to refer me to another hospital as I wanted answers and to understand what lupus means for me and how I could help myself. I have never even had my bloody results explained. Would welcome knowing where I could ask to be reffered to?

Thank you

[Paul_Howard Partner LUPUS UK in reply to rachaelwhyde]

Hi rachaelwhyde ,

Your closest lupus specialist is probably Dr Nicola Erb at Russells’ Hall Hospital in Dudley.

[rachaelwhyde in reply to Paul_Howard]

Thank you I will look into a referral from my GP.

[farmerfeste]

You are not alone in not having your results explained my reumatoligy St won't answer any questions I ask regarding tests etc .I don't believe I have lupus .

[rachaelwhyde in reply to farmerfeste]

It is dreadful that they won't answer any questions. The doctor I saw barely gave me eye contact, wasn't interested in anything I asked or said. He had already made his mind up I was having a steroid injection!