Im New Here

[Yorkshiregirl1986]

Hello everyone, im new to this. I have been told it is very possible i have lupus. I am just waiting for a diagnosis. How long did it take people with lupus to get diagnosed

[Pickzie]

What tests did you have? Presumably your blood tests included ANA.

[Yorkshiregirl1986 in reply to Pickzie]

Hi sorry for the late reply, i have had a positive ANA test, i havent actually been diagnosed with lupus yet but the gp said it is more than likely i have it, he said im on the positive scale for it?

[Hidden]

Mine took a while as it was some time ago and there was no guidelines then, everyone was doing their own thing. I presume as Pickzie is saying your doctor did the standard autoimmune tests including ANA and ESR, CRP, etc the list goes on and many of these will fluctuate according to whether lupus is in a flare. The tests themselves take about a week. They should be used in conjunction with a symptom history. There are good leaflets on this site.

[Yorkshiregirl1986 in reply to Hidden]

I have a positive ANA test but i havent been told i have it yet.

[whisperit]

Welcome Yorkshiregirl1986

The answers to your question will vary hugely, depending on whether your symptoms are very clear cut, the blood results and the personal inclinations of the clinicians involved. The LupusUK leaflet on the "Home" page here on symptoms and diagnosis tells you what doctors are looking for, but most people don't fit neatly into the diagnostic categories - lots of us have had other diagnoses first, provisional diagnoses, or are still struggling to get a diagnosis of any kind!

On the plus side, you may still get useful treatment even if the diagnosis is only provisional and there are always people on this forum who will help you with any questions or worries you might have. Hope it works out well in any case x

[Paul_Howard Partner LUPUS UK]

Hi Yorkshiregirl1986 ,

The time it takes to get a diagnosis of lupus varies significantly for various reasons. Hopefully now you are on the pathway you should get some form of diagnosis and an action plan without much delay.

Are you currently being tested for lupus by a rheumatologist?

If you would like more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Yorkshiregirl1986 in reply to Paul_Howard]

I have been referred to a rheumatologist so hopefully i will get answers soon. I dont have the rash though although i have noticed if i look closely my cheek looks like its a bit peeley? I have been getting tired more than usual but i suffer with an underactive thyroid as well. I have a positive ANA test and my gp said im on the positive scale for lupus. I have to admit im scared

[Paul_Howard Partner LUPUS UK in reply to Yorkshiregirl1986]

Hi Yorkshiregirl1986 ,

I'm glad to hear that you've had a referral and also hope you get some answers soon - please keep us updated.

Only around 30% of people with lupus have the classical malar 'butterfly' rash across their cheeks and bridge of nose, so not having it doesn't rule lupus out as a possibility.

I can appreciate your anxiety, but would encourage you to just focus on the symptoms that you are experiencing and not to worry about everyone else's lupus. Lupus presents differently in everyone and can cause lots of different symptoms, but that doesn't mean that you will necessarily experience them.

[Hidden]

It's taken nearly 3 years before I finally got my diagnosis, the doctors umed and ahhed whether it was lupus or not. It's only since I began with my neurological problems, 14 months ago, that they've been keen at giving me hydroxychloroquine and various other ones.

I'm struggling that much at the moment I've been on chemotherapy and steroid infusions since September every two weeks. My heart is enlarged and I have got kidney function issues, not to mention the significant hair loss... Although the chemo has helped to slow this part down finally. Hopefully coming out of this flare soon.

Fingers crossed for a much swifter diagnosis, it is frustrating but just keep a record of the day to day struggles. Try not to panic

[Bmagrl]

Hi Yorkshiregirl1986!

It took me around 3-4 years to get diagnosed. I had some good Drs but they kept getting bogged down just treating my symptoms rather than looking at the big picture and trying to find the main problem.

I did find that getting organized helped. I keep copies of all my medical records/lab results and I sat down and made an overview page. Basically a list of symptoms and treatments in order of the date they happened. I also wrote down a list of past health issues and treatments going back to when I was a teenager. I found that having all the info written down in a basic manner helped me give better answers to Drs and helped me ask better questions. That list was priceless when I went to my first appt with the rheumatologist bc he wanted a detailed medical history and a detailed list of symptoms. My brain fog/confusion would've made this impossible had I not had it written down. The doctor was able to expedite a diagnosis since I had all that info on hand. I had the official med records in case he wanted copies but having an overview list helped me answer the questions

Be an advocate for yourself. It takes some time but it's worth it

[Pickzie]

Hi Yorkshiregirl1986

I was diagnosed and on treatment within 6 weeks of my blood tests - ana esr compliments etc. The positive ana together with the symptoms was enough for the rheumatologist to get me onto hydroxychloroquine and non- steroidal anti-inflammatories. Took a few weeks to ‘build up’ levels but felt a lot better and less fatigued within a few weeks. Lots of diffferent drugs and options available as we are all different so wait to discuss with rheumatologist. You’re already on the right path - blood tests and referral to rheumatologist- so hopefully you’ll get more clarity soon. While I’ve had my ups and downs, I was diagnosed 25 years ago and with the treatment drugs and some good self care I’ve worked full time , brought up 2 children, and not let lupus define my life. I know it’s scary but keep positive. Pickzie xx