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.
J'ai commencé avec l'éruption cutanée il y a 9 ans après la naissance de mon premier enfant. Je l'avais sur le visage, les bras, les jambes, les mains et les fesses, ce qui est si embarrassant ! Je pense être allée chez tous les dermatologues et m'être vu prescrire crème sur crème. Ce n'est qu'en mars dernier que je suis allée chez un dermatologue différent et qu'il a dit : faisons un échantillon de peau et des analyses de sang. L'échantillon de peau était non concluant, mais j'avais un ANA positif. Ils ont également testé certaines choses qui pourraient être positives avec un ANA. Celle qui est revenue positive pour moi était l'ADN double hélice. Une fois que le dermatologue a eu ces résultats, il m'a adressée à un rhumatologue. C'est là qu'il m'a diagnostiquée avec le lupus.
J'ai toujours l'éruption cutanée, bien que ce ne soit plus aussi grave. J'ai encore des poussées. Étrangement, le soleil ne m'affecte pas. Je n'ai pas non plus d'autres symptômes comme les douleurs articulaires. Je n'ai que cette éruption cutanée !
Je suis sûre que vous allez consulter un rhumatologue et qu'ils vous mettront sous plaquenil. J'en prends depuis quelques mois. Je n'ai pas vu de changement dans l'éruption cutanée, mais c'est un traitement préventif pour aider les autres organes de votre corps.
Bonne chance !
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
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 😄😄
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.
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.
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 😂
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
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
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
I agree from what I have been reading my GP Is doing quite a good job. 😁
hi Kay, did you get fully diagnosed in the end?