First lupus clinic visit, what to expect? - LUPUS UK


30,403 members26,980 posts

First lupus clinic visit, what to expect?

Jenny1 profile image
11 Replies

Hi all. I have a baffling range of symptoms over the past three years. Lots of tiredness, joint pain, arthritis, infections and a climbing positive ANA. I saw a rheumie a year ago who just said had lot of osteoarthritis and do physio and painkillers. Things have got worse and I am going to a different rheumie. He works in a big hospital with several clinics and he has given me an appointment for his lupus clinic. Lupus is his specialty.The first doc barely glanced at my hands and feet. What should this visit involve?.

11 Replies
Paul_Howard profile image

Please let us know if you would like one of our free information packs. Just send me a private message or email with your name and address.

Purpletop profile image

In addition to bluebell's list, don't forget to take off any nail varnish (both hands and feet) so that the doctor can check the nails properly.

crankyme profile image

Jenny1 bluebell has just described what happened at my rheumy appointment and I got a diagnosis there and then after years of going to my g.p with many many health complaints. Although it is not great news knowing you have lupus or any auto immune desease at least i know why all these things have been happening to me and feel much more positive these days.

Take care and hope all goes well.

Thaddeus profile image

Hello Jenn1

Make a list of any question you want to ask or points you wish to make. Take a snack with you, as it can be stressful and remember that you can get a tube from across or walk to Chinatown for a nice lunch. I recommend Canton which is off little newport street and chinatown itself.

It is usually worth the effort of using your trip to treat yourself. There are many things to do which need'nt cost much in either money or energy

Jenny1 profile image

Thanks so much for your kind replies especially Bluebell. I have had a bad year-so far and have been to so many docs who have said that's odd for your age but can't give me any answers. It sounds bad but an answer would mean so much. Not getting my

hopes up tho. It's been 3 years since all this began and some of my experiences have made me quite cynical !. Will let you know how I get on. Thanks again. J x

bluebell99 profile image

Hi Jenny1

Just remembered, ask for a copy of the letter that will be sent to your GP. Also a copy of your blood results.

Whatever the outcome you will have something in writing that you can refer to for reassurance and offer as "proof" in case you need it for other doctors, specialists, DWP, etc.

I found I needed to keep looking at the letter whilst the news took a little time to absorb. Even though you are probably expecting the result to be Lupus, it is good to have your diagnosis written by a rheumatologist who knows what he is talking about.

If you do forget to ask at the appointment, your GP receptionist should be able to give you copies. It just cuts out a lot of waiting time. Your GP may want to see you to discuss the result and it is good to go ready prepared.

Hope all goes well for you. x

fabwheelie profile image

He may ask about things such as are you sensite to the sun, do you have any rashes, do you have problems with mouth ulcers? They will do blood tests. These are all part of diagnosis of Lupus (officially for it to be Lupus 4 out of 11 criteria have to be satisfied)

If it is Lupus joining the charity Lupus UK is a big help

Jenny1 profile image

I had my appt. on Friday and was too disheartened to write till now.I got a team doctor who had poor english, I had to spell several symptoms. Again my hands and feet were barely looked at. He only concentrated on lupus specific questions tho my gp asked about connective tissue disease. Said had lot of pointers to lupus but no specific antibodies so unlikely to be it. Enter consultant. Said my thyroid antibodies responsible for high ANA though these have been at same level for three years. Ignored arthritis. Asked if do excercise which I do regularly or would not be able to move. Have to have repeat bloods and to go back in six months.Don't want a bad diagnosis but would love some explanation for all the things that are going on.

DonnyJM profile image

Hi Jenny,

If you are not happy, which I can totally understand from what you describe, then I would go back to your GP and asked to be referred elsewhere.

The will probably be another hospital within travelling distance that you could be referred to depending on where you live.

When you go to your GP give a full list of your symptoms to him/her and ask for that to be sent with your referral.

Stick to your guns and be strong. It's a hard road getting a clear diagnosis and no two Dr's have the same experience and understanding.


Jenny1 profile image
Jenny1 in reply to DonnyJM

Thanks so much for your message Don. I think they forget sometimes that the blood test results don't always equate to the actual physical symptoms. You wait months in pain hoping for an answer and if they can't figure out it's no big deal to them but you are still left in pain. Will take me a few more days to feel like going to the GP but I will pick myself back up. Thanks again Don and have a good week.

DonnyJM profile image
DonnyJM in reply to Jenny1

Hi Jenny - I read recently that in the early stages of SLE (especially later onset) it mimics other illnesses very cleverly and that bloods can often be negative or show very little.

It means that bloods may not yet show enough but with a positive ANA and those symptoms you have enough to keep on pushing. I'm exactly in the same position but my Rheumy did diagnose SLE but says I don't need meds other than NSAIDS at the moment. They do help a bit - even if it might be a placebo effect?

Hang on in there. Lupie hugs.

You may also like...