What to expect at first rheumatology appointment?

[Helzipop]

Hi everyone, I've recently had my ANA results back at a titre of 1/640 with positive anti-Ro and anti-La, after suffering from mainly fatigue, brain fog, eyebrow loss, photosensitive facial rash and other skin, hair and nail issues. My GP has made an urgent (not sure what makes it urgent?!) referral to rheumatology in a few weeks.

I was wondering if anyone could share what to expect at this referral? Will they be doing more tests and evaluations or have people had a diagnosis on arrival based on their medical history? If there are more tests are they done on the day or will I have to wait for later appointments? How quickly did you get diagnosed and how long did it take to start any medication? I'll be going to Cumberland Infirmary in Carlisle if that makes any difference!

I'm really hopeful that I'll finally get some answers and maybe even some medication to help relieve some of my symptoms as soon as possible, but I don't want to get my hopes up if that's unlikely!

Would be great to hear any of your experiences.

Thanks! 😊

[BonnyB]

Hi, I had similar symptoms to you. Urgent referral. It took 3 weeks to see rheumatologist, which I was very grateful for.I had blood tests, full body examination, had to strip off to underwear( felt and looked all over body for trigger points of pain). I took photographs of my face rash. I had to take a morning urine sample, had weight and height.

I was asked lots of questions, right from birth. Up to then. Luckily I had made notes on dates of illnesses. Several years previous had shingles and pleurisy, I had never fet right since then.

I was diagnosed UCTD with lupus features.

Prescribed hydroxychloquine. Didnt see rheumatologist again for almost 18 months. A nurse helpline helped me with any questions. This was all at the height of covid.

Diagnosed later with sjogrens, this tends to be connected to lupus, finally saw a dermatologist the other week( have a look at my post) she Diagnosed lupus, said it was a molar rash. I'm now waiting to go back to rheumatology in next few weeks.

Hope this helps. For many people it takes a long time to get a diagnosis, treatment can start to treat without it, there isn't one test, lupus mimics other conditions so there's a criteria.

I hope this helps, there's lots of information on lupus UK, Inc prep for medical appointments. Things that you don't realise are connected to autoimmune that you experience, have a read up before your appointment.

Lots of love x

[KayHimm]

Hi Helzipop -

I am not surprised your ANA came back positive. I sort of remember your GP was already pretty sure you had a connective tissue disease even without seeing the ANA results. You must have had a facial rash that was specific. You also had other features.

You have similar diagnostic tests to me but with much higher ANA. The rheumatologist will do a thorough exam, looking for every sign and indication of inflammatory issues. You will think the exam is quick but, trust me, they will have examined everything from your mouth to every joint within minutes. I never paid much attention until, for the first time in forty years, I saw the notes. Very detailed and accurate, even down to the 70 percent range of motion in right elbow.

You might have more bloodwork and imagining. Rheumatologists seems to be doing more ultrasound of joints than in my early years.

They take the total picture and arrive at a diagnosis. For people like us without the more specific lupus antibodies they have their own way of expressing that. If it is early in the disease process, they could say “probable lupus” if there are lots of lupus signs, they could say undifferentiated connective tissue disease or lupus-like illness.

Try not to focus on the boxes. You will be treated based on presentation and followed closely.

So far, your GP seems to have not seen any organ involvement. That is good. He sounds like a very competent and confident doctor. GPs don’t have the opportunity to see rarer autoimmune patients. He relied on his eyes and ears and knew you likely had something.

Good luck with your first appointment!

Karen

[RosieA]

You've had two great replies. I was told that some patients present with clear cut bloods and symptoms that pop them straight into a box, others like myself, take the scenic tour. I was initially a bunch of ever growing symptoms and ANA+ve, low complements. As my disease evolved I was eventually, after a year diagnosed with Lupus lite UCTD. Regardless, I started treatment immediately on the first visit., steroids and methotrexate. OK my meds have changed to Hydroxycholoquine but that has reflected how the disease has progressed. It's great that you have your referral. Good luck and do let us know how you get on if you feel able.

[Helzipop]

Thanks everyone, I really appreciate you all taking the time to read and reply to put me at ease a little bit!

I feel a bit better knowing that I don't necessarily need to get a proper diagnosis to be started on treatment, obviously I'm sure this'll depend greatly on the consultant but hopefully I'm not looking at more months waiting to start.

Also it's really good to have some idea of what to expect at the appointment itself - I had not expected to have to strip down so I'm very grateful to know in advance 😂

I'll post again once I've had the appointment and hopefully that will help someone else in future.

Thanks again, you guys on here are the best 😊

[KayHimm]

Helzipop -

Unfortunately, you will have to do that strip down. 😅 These illnesses affect the whole body and the rheumatologist won’t let you out until they have checked skin, hair, heart and toenails!

Try not to think of “proper” diagnosis but accurate diagnosis. Lupus is not an accurate diagnosis is full criteria is not met because it actually confuses the picture. In your case, if you have arthritis, you actually may receive a diagnosis of lupus. There is a reason the malar rash - particularly if seen by a doctor - gets six points toward a diagnosis of lupus. It is highly specific. I used to have a rash lower on the face which was diagnosed as “consistent with connective tissue disease. “ There is a difference.

You are probably hearing why your GP needs a consultant who puts everything together. Yes, you will absolutely get treatment for a diagnosis of systemic connective tissue disease. There are people here on this forum getting DMRDs, steroids, and even IVIG with overlap conditions or UCTD.

You will be taken care of!

XxK