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Referral to rheumatologist, positive ANA what will happen next?

Posted , 6 users are following.

Kay0614
Kay0614

Hi all

New to this forum so any replies would be appreciated. I'll give a brief history of symptoms.

4 years ago Raynauds started, 3 years ago reaction to sunlight itchy red swollen rash on hands and top of feet ( arms legs, any where exposed to sunlight, never on my face).

September 2016 pain began in hands and feet and extreme tiredness.

December 2016 pain in hands feet ankles and fingers: Raynauds particularly severe. GP blood visit blood tests showed vitamin D deficiency and borderline abnormal Bone Profile.

April 2017 repeat of bone profile and victims D bloods: came back normal. Pain affecting day to day life by this point, painful hands fingers and joints dead arm feeling started arms feel really heavy pain constant worse in a morning but never goes.

May 2017 GP visit as symptoms worsening ANA Blood tests

June 2017 blood tests came back, GP visit requested a copy of results but dr reluctant but did read off some of the results. Here are the two I remember raised anti-RNP and ANTI-Sm (hopefully I remembering these correct) dr didn't discuss what it indicated and told me to discuss concerns with the rheumatologist. Basically I feel my symptoms match Lupus and wondered if anyone had similar: what should I expect at a first appointment etc? GP was very vague at appointment.

Also interest in how lupus has affected people's life and your diagnosis journey.

Look forward to any ones reply lol thanks.

 

0 likes, 12 replies

12 Replies

  • Superitchy
    Superitchy Kay0614

    Posted

    I started with the rash 9 years ago after the birth of my first child. I had it on my face, arms, legs, hands and butt which is so embarassing! I think I went to every dermotolilogist and was prescribed cream after cream. It wasn't until this past March when I went to a different dermotolilogist and he said let's do a skin sample and run bloodwork. The skin sample was inconclusive but I had a positive ana. They also tested for some things that it could be with a positive ana. The one for me that came back positive was the double helix dna. Once the dermatologist had those results he referred me to a rheumatologist. This is where he diagnosed me with lupus.

    I still have the rash although it's not as bad. I do still have flare ups. Oddly enough, the sun does not affect me. I also do not have any other symptoms like joint pain. I just have this rash!

    I'm sure you will be going to a rheumatologist and they will put you on plaquenel. I've been on it for a few months. I haven't seen a change in the rash but it's a preventative to help other organs in your body.

    Good luck!

    • Kay0614
      Kay0614 Superitchy

      Posted

      I like the name superitchy! 😁 that's me all over. I've always had problems with my skin since a teenager never had it investigated further until now, the reaction to sunlight is new though. Thanks for your reply! I'm glad you are getting the treatment you need it's just all so worrying waiting for a diagnosis I really need to stop looking at DR Google it's making me paranoid 😂

  • clareb
    clareb Kay0614

    Posted

    Hi. I've been diagnosed for decades.  Mine was very straightforward but, be warned, most are not.  It can be very drawn out with appointments months apart. Your Rheumy will run all blood tests again plus some extras, you will give your history and have a physical examination.  Possibly X-rays and scans depending on your symptoms.  Then you'll be sent away until your next appt.  There are many different connective tissue diseases and combinations/overlaps also so your Rheumy will tread cautiously until he/she has a picture of your particular condition.  Average time to diagnosis is 7 years but hopefully yours will be quicker.

    Good luck x

    • Kay0614
      Kay0614 clareb

      Posted

      Wow that is a long time! I've read a lot of people had to wait years for a diagnosis. So far I know I have been quite lucky with my GP he's ordered all the tests needed and got an appointment with the Rhuematologist less than 2 weeks after GP gave results: from reading everyone else's experiences I'm definitely doing ok on that sense. Ah thanks for that information wasn't expecting all the tests again so atleast i no to be prepared as the ANA blood results took nearly a month to come back. Keep well. Thanks again

  • marion64534
    marion64534 Kay0614

    Posted

    Hi I was lucky to be diagnosed straight away,but it did take over a year to get the right medication to suit me, hang in there!!!! It's such a complex condition  and we're all so different,iv been told I'm gluten sensitive which has helped with sickness,worth a read if you google it,good luck 😄😄

    • Kay0614
      Kay0614 marion64534

      Posted

      Thank you I'll look into that though sickness isn't one of my symptoms, that must not be nice 😐 I hate to be sick as do most. Fingers crossed it's not too long a process, everyone's diagnosis varies so drastically like you say. 😊 thanks hope you too are well

  • margaret22116
    margaret22116 Kay0614

    Posted

    Hi. You are lucky in a way Kay as you seem to have a very good and understanding doctor. A lot won't even undertake these sorts of investigations without a major struggle.

    I don't have Lupus but have something very similar with very similar symptoms. It took me a year of seeing an immunologist to get a diagnosis. I was diagnosed over 13 years ago. Many treatments now for vasculitis. Some of them work for some people but not others. Lots of trial and error. Sone have major side effects.

    I hope things settle down for you quickly. I think your doctor didn't say much because of the complexity of these diseases and treatments. I wish you well and hope for improvement in your condition soon.

    • Kay0614
      Kay0614 margaret22116

      Posted

      Thank you for your reply. Yes I have googled everything I can, I know I shouldn't, but it's amazing how many different illness can have all the same features. I'll hold out for rhuemy and take it from there and try not to worry: I feel so poorly and run down, the pains have not let up since september not one day symptom free it's painful to write what a nightmare lol. Hope you are well and I wish you luck with your illness too. Thank you

    • Kay0614
      Kay0614 margaret22116

      Posted

      I agree from what I have been reading my GP Is doing quite a good job. 😁

  • Kay0614
    Kay0614

    Posted

    Update copy of results now recieved. ANA postobe, speckled. Anti chromatin ab level above normal at 5.20. Anti smith and rb above normal at 8.00 and anti rnp above normal at 5.50.
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