Hello, I' a newbie and need appointment advice, please

[Arcus13]

Hello,

I am a 45 year old female with a history of painful joints, hands, wrist, fingers and knees which came on very suddenly with a rash about three months ago. After 6 weeks my GP sent of bloods to test for RA (paternal history of RA Lupus plus other AI)all came back negative.

Since then the pain had settled a bit and I could managed it with paracetamol alone. However along side this I was experiencing other odd things such as very bad constipation, extreme tireness, a strange allergy to sunlight which made me come out in hives and gave me rather rosy cheeks (well looked more like bad sunburn!!) also, my periods stopped (not menopause as self test with urine FSH tests) also hair falling out to the extent that I have to tie it up to hide the thinned patches..

Yesterday I had another sudden onset of the extreme pain on my joints. I returned to my GP, well practice nurse actually as that the only appointment I could get. She was really helpful and has sent me for a whole batch of bloods including the ones for Lupus and given me some decent painkillers.

The nurse also had a word with the duty doctor who is putting a urgent referral through to the rheumatology department at my local hospital. I am rather nervous about this, but please that the same time that it is being taken seriously and they don't think I am going bonkers.....like they did before I was diagnosed with a underactive thyroid!!

Please could you tell me what happens at a first appointment at a rheumatology clinic?

Many thanks.....sorry for the long winded message!!

[whisperit]

Hello and welcome, Arcus13

As you say, it's often the case that we carry a lot of worries with us when we have these complicated and rather confusing symptoms. But you are right, it's good that your concerns are being taken seriously.

I think the typical initial appointment with a rheumy is fairly standard. The main thing will be a history, a scan through your recent blood results to look for things like the ANA and inflammatory markers, and then s/he will probably do a simple examination - feeling joints etc - nothing invasive. The Lupus UK leaflet on symptoms and diagnosis might be good preparation. It will help you understand what the rheumy may be looking for, and what bits of your history it's most important to highlight. lupusuk.org.uk/wp-content/u...

You might want to make a list of your most urgent/worrying questions so you can make sure you get to ask them - it's easy to get flustered in these circumstances and forget what you meant to say or ask.

Do let us know how you get on! x

[Arcus13 in reply to whisperit]

Thank you for your reply, and yes I think that's what I most worried about, forgetting to ask the right questions and getting the information I need. Before my Drs/nurse appointment yesterday I (well actually ask my colleague) typed up a list of all my symptoms, history and questions which help loads as I suffering from terrible brain fog as the moment too. But the only problem with the rheumatology appointment is I don't know what if any condition I might have to base questions on......but I guessing my ANA results will by back by then (two week turn around as they have to be sent to a different hospital as my local cant process them) so at least I may have an inkling????

What I did forget to ask yesterday is what is the time wait for an urgent referral.....is it still many weeks/months?

Many thanks

[maggielee in reply to Arcus13]

Good question to ask, can take many months to get an appt. So take pictures of any rashes & try to note of any connection to uv light & if it made you feel worse in the following days. Also, may like to bring someone with you to the appt. For me it was my husband, i hoped he main help support or at least witness the treatment i was getting....so i could compare notes as i had no specialist knowledge.... ML

[eekt in reply to Arcus13]

If ANA is positive, the lab will do dsDNA (which is highly predictive of SLE), and that can take 3-4 weeks.

whisperit wrote a detailed reply to a post on urgent referrals (healthunlocked.com/lupusuk/... the treatment time pledge/guarantee applies, ie within 12 weeks to see a consultant, the urgency within that timescale depending on test results.

This document sets out how a Rheumy will assess for SLE:

academic.oup.com/rheumatolo...

Make a list of all your questions, and if you run out of time for them all at the appointment, leave it with the Rheumy. It's good to be informed!

Keep posting, and be well! xxx

[Paul_Howard Partner LUPUS UK]

Hi Arcus13 ,

Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support.

I'd like to wish you the best of luck with your blood tests and rheumatology referral. Please keep us updated with how you are getting on.

If you need any tips on preparing for your rheumatology appointment you may find our article here helpful - lupusuk.org.uk/getting-the-...

[Arcus13]

Thank you all for your helpful advice.

I had a phone call from my GP surgery who have book my appointment through the Choose and book system for 13th November ...... however as my referral has been sent through as urgent apparently the hospital will send a sooner one once the consultant has had chance to see the GP letter.

From what I read this could possibly be the start of a very long uphill struggle!