advice needed

[RCLXO]

hi, I’m new here! I’m 28 years old normally healthy ish!

My story feels strange, but I’m hoping you guys can help me!

I went to my gp in June this year as I was brining up blood (this was my new normal since having covid 19 really badly 3 times) so they sent me for a CT scan which showed a black shadow on my spine.

Now I should say I’m a nurse and have been in health care for nearly 10 years - so iv had ‘bad back’ and iv always put it down the the job oh and that I am a little overweight!

gp did bloods and my SLE come back at 185units (or whatever measurements they use) when it should be below 11.

I was referred to rheumatology and have my appointment end of November.

Just wondering what the process will be at my appointment, will it be another poking prodding & waiting game?

I have most of the typical symptoms like a butterfly rash- but that comes and goes

Sores in my mouth

Hair loss

Painful joints (again my job & weight)

Depression anxiety

But I also worry incase iv tricked my brain into some of these symptoms!?

can anyone offer me support or guidance/ advise for the up coming appointments?

[Lizard28]

I was over 10 years trying to get a diagnosis, nothing showed in my bloods except a very high RF and inflammation rating. I was diagnosed with MCTD after a while then I had a really bad rash and swelling in my hand. I was referred immediately to dermatologist who did a biopsy and bingo it showed I had lupus. I tend to get taken a bit more seriously now but at the beginning I just had the feeling I was wasting their time. My first appointment I was in for over an hour as they thought I had GCA and was on steroids for 10 months, they did all blood tests and examined me all over, it was the 100 questions I was being asked, she must have had a few sheets of paper filled by the end of it. She was very thorough like she was trying to solve a mystery of all my illnesses. I could write a book on all my negative appointments after that. Good luck and hope it’s a good appointment like my first one. X

[RCLXO in reply to Lizard28]

Thank you so much for your reply!

Sounds like you’ve have a good ride with being diagnosed!

I guess my expectations and being realistic are two different things 😔 wish & hope it was a smooth journey!

I hope you have good support since x

[Lizard28 in reply to RCLXO]

Yes I have, no complaints so far, take care xx

[RosieA]

Gosh, you have a lot on your plate. As you have already been diagnosed with Lupus have you not been reviewed annually by Rheumatology or has your GP been managing it?

It is hard to answer your question as just a quick glance through recent posts will show an astonishing and tragic range of experiences and access to care. It really is dependent on your area.

It's good that your GP has done some bloods recently, as the consultant will be able to see those and it will add information at your first appointment. Are you keeping a dairy? A list of symptoms? It can be such a whirlwind it's amazing what we forget!

I am extremely fortunate to go to a Lupus Centre of Excellence. I was seen after going to the GP - initially diagnosed by rheumatology in my first appointment with inflammatory arthritis but over the course of 4 years this has turned into Lupus with photosensitivity, mouth sores, joint inflammation etc and latterly pericarditis and potential pleurisy. Although it took a long time, this was just because my disease has emerged from inflammatory arthritis, UCTD to Lupus. At each consultation they take bloods, urine sample, go through symptoms and have initiated or reviewed meds and ordered any further tests needed.

My first appointment was long - prescribed steroids and methotrexate, saw consultant, specialist nurse, X rayed, and physio all booked. Latterly, like everyone else I had to wait (a couple of months) for echocardiogram.

This is only one perspective, hope it helps a little and wishing you good luck. x

[RCLXO in reply to RosieA]

Hi Rosie,

Thank you for your reply! I haven’t been diagnosed yet, my GP strongly thinks it could be lupus, and has referred me to the rheumatologist.

I haven’t kept a diary, this is a good idea so will start that now!

I’m sorry to hear about how many obstacles you’ve had but it’s good that you’ve got good support!!

Thank you x

[baba]

"gp did bloods and my SLE come back at 185units (or whatever measurements they use) when it should be below 11."

What was the blood test?

[JovanaS]

It's probably ESR - erythrocyte sedimantation rate, which is sometimes measured as a inflammation marker.