May's Blog - Lynne's experience of her first rheumatology appointment

[Paul_Howard]

For May and June we have invited people to share their experiences about their first rheumatology appointment for our blog. This month's story comes from Lynne who fortunately had a very good experience. Thank you Lynne for taking the time to share your story.

My first appointment with my rheumatologist was very thorough and filled me with confidence for my ongoing journey. I'd already seen a dermatologist who had suspected a connective tissue disease. I had a diagnosis of urticarial vasculitis but with a positive ANA, Ro, La, double-stranded DNA and so on - they suspected that there was more to it.

At the appointment the rheumatologist asked me for a full medical history going back to childhood and she also asked about my family history.

I had to strip to underwear and have a full examination, and perform various tests. I was found to be hypermobile and I had impaired tear production on Schirmer's test.

When explaining symptoms I explained how the fatigue affected me, and how bad the pain was to help her to understand the severity of my symptoms. These days if my symptoms are mild I say so, and the same applies if they are worse; by being completely honest I know my rheumatologist will understand that if I need help I'll ask for it. Luckily at the moment I'm very well!

The rheumatologist gave me her thoughts on diagnosis. At that stage primary Sjögren’s (although lupus was not ruled out - this diagnosis followed soon after) and she explained the diagnosis and why she was giving it. I was provided with leaflets on Sjögren’s and lupus.

I was commenced on treatment (Hydroxychloroquine and prednisolone) and asked to return in a few weeks. I was given lots of opportunity to ask questions. She also pointed me towards a couple of websites, discussed vaccinations that I needed and let me know I could contact her if I needed help in between appointments.

There were students in during the consultation and they were able to see my unusual rash. Later, whilst I was with a nurse having blood taken, the rheumatologist popped back in with even more students to show them my rash!

There was a lot to cover during my first appointment, but luckily I had prepared in advance by writing down my history and some questions that I had. I still do this now so I don't forget anything.

I'm very lucky to have a very good rheumatologist who looks after me well and whom I trust.

Next month we will feature more stories from people about their first rheumatology appointment. For more advice about getting most from medical appointments, please take a look on our website at lupusuk.org.uk/living-with-...

[misty14]

Hi Lynne

Interesting reading your first Rheumy appointment account. Glad it was a good one and your getting good treatment. In my experience I've found Rheumy's are best when they have students with them because they have to be seen to be doing a good job!. I've also found lady Consultants more thorough than men. I'd be interested to read of other patients experiences. Hope you stay well. X

[Bronagh2015]

Glad you have had a positive experience, it is one less problem to have to deal with 😀

[Caramia64]

hi I just wondered do you perhaps have a photo of your rash that you had ??