Help & Guidance Please

[JonathanMasters]

We live in the UK, and my wife has recent been diagnosed with Lupus at our local hospital.

I must admit my wife and I are find the whole experience very confusing, and i am not totally sure the hospital are giving us the right advise so I am hoping people in this forum might be able to help us.

We spent about 18 months attending appointments as Erika was suffering with; aching joints, feeling run down and cramps.

The hospital consultant for 18 months explained that the medication for the symptoms were very terminal and he didn't want to put her on any medication until he was sure what it was. At this point we thought it was arthritis.

In January 2017, Erika did a water sample at the hospital. A few days later the consultant rang Erika and told her due to the results he needed her to start taking medication for Lupus as she had traces of Lupas in the sample. She was not allowed to have an appointment with the consultant until August 2017.

We attended the appointment asked many questions but it was played off like it was nothing. Almost like as you only have the start of it, you'll be OK.

Since the appointment she has done 3 more samples because; 1) got lost in the hospital, 2) got left to long and they need a fresh sample, 3) hopefully they will do something with this one.

My main concern is. If they can't get these samples right, could she have been diagnosed incorrectly? Could that sample have been let to long?

Anyway, I would like to try to find some alternative advice as the doctor at the hospital are concerning me now. Is there a nation expert we could speak to? A group we could attend?

Any help and advice would be greatly appreciated.

Thank you

Jonny

[Tigerlily4]

Hi Jonny,

Firstly I'd say that while systemic lupus can, in a minute number of cases, eventually prove terminal and can prove tricky to learn to treat and manage, I've never heard of a consultant describing medication used to control the disease as "very terminal". With the greatest respect, I think something said has become confused with something else, which is not unreasonable when people are faced with/shocked by an unpleasant diagnosis.

That the consultant delayed and was not particularly concerned at Erika's follow-up appointment last August suggests, to me, she probaby has slow onset SLE with no particular threat to her mortality/health at present. That's not to say she's not experiencing significant joint pain, fevers, heaches and/or all the other awful syptoms lupus can bring. Even mild SLE can be really distressing.

However, things do become better once you learn how to manage it - what works, what doesn't - but that's something that can only be achieved over time by negotion and in partnership with a Rheumatologist who has an expert knowledge of the disease. I've had slow onset SLE for 32 years now. There was some major organ involvement to begin with, which was really scarey, but it soon settled down. Whereabouts do you live? If I can't help with a recommendation for an expert I'm sure others in the forum might.

Lupus UK, our national charity, is also a fount of information and will also help where they can. It's well worth joining. Hope that helps! Hugs to Erika x

[misty14]

Hi Jonny and Erica

I can fully understand your confusion at how your wife's diagnosis was given and the way her water samples have been mixed up and not used properly doesn't give you confidence in your local hospital. I think also what the consultant meant when talking about terminal drugs was that the strongest they can give arecimmuno-suppressives which come with serious side effects that in very rare cases can prove fatal. He was right to say that amount of symptoms and signs has to be enough to justify giving those strong drugs and they are well monitored !. They should have taken more care of your wife's samples as the big worry for possible lupus is kidney problems!. There are other less worrying drugs that are given for mild to moderate disease. These are started to see if help given.

I think you should have had things explIned properly. If your really not happy with your local hospital you could ask on forum for other recommendations that are close to where you live as Tigerlily rightly says. You may be near a lupus centre of excellence for instance!. Alternatively email Paul Howard at lupus uk and ask him for a recommendation. He's compiled a good list of consultants. Let me know if you want his email address.

Erica is very fortunate to have such a supportive husband and I hope what I have written helps you both at such a stressful time. Best wishes to her too. X

[whisperit]

Hello JonathonMasters,

Like Tigerlily4 says, lupus and the related conditions can be difficult to understand, and many of us feel confused and unclear at first. In fact, many of us feel that way on a regular basis!

My suggestion would be to take a look at the LupusUK leaflet on symptoms and diagnosis on the "Home" page here. Make an appointment with your GP, who should have all the relevant clinical notes, and ask him/her to take you through the tests and treatments done so far and how they fit with what the leaflet says.

And don't forget to keep in touch here with how things go! x

[Paul_Howard Partner LUPUS UK]

Hi JonathanMasters ,

Welcome to the LUPUS UK community forum. I am glad to see that you have already had some helpful and supportive responses from other members here.

I am sorry to hear that you are unhappy with your wife's current rheumatology team and lack confidence in them. It may be worth discussing this concern with her GP and asking whether a referral to a different rheumatologist for second opinion could be worthwhile. There are a number of lupus specialists and specialist centres across the UK. If you would like to let me know what area you are based in, I can provide you with information about any lupus specialists near to you and also details of your nearest lupus support group.

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...

We also have our full range of publications available to read and download at lupusuk.org.uk/publications/