Diagnosis and symptoms advice.

[Sky8888]

Any advice about diagnosis would be much appreciated...I have RA and Raynards. Over the past 2 years, my symptoms have widened. My hands have become increasingly red and swollen sometimes swollen with ulcers and splitting skin. I was prescribed Nifedipine which has helped a bit but my face is constantly red/flushing and can feel a bit numb. I am very sensitive to light, my skin burns easily in the sun, I have constant headaches, my ribs hurt, I am constantly very tired, my joints and muscles hurt, I have night sweats, I have dry eye syndrome.. Yet, my Ana and ENA results show negative for Lupus.

Any advice on how to progress would be very much appreciated.

Many thanks.

[MusicalFurbaby]

Hi Sky, sorry to hear you’re having such a rough time lately. Sounds like your RA is giving you a lot of trouble. You could be flaring atm.

Are you under the care of a rheumatologist? Sounds like it might be time to check in with them, if you haven’t already, and explore options for medication and treatment.

I hope you experience some relief soon, you sure could use some quality of life right about now!

[Sky8888 in reply to MusicalFurbaby]

Thank you very much for your reply and kind words, Musical Furbaby. Yes, I have had a RA Consultant for over 10 years and have been on many different treatments. My hands seem to be a different issue to the RA and other illnesses I have. My GP has referred me to Dermatology so I will see what they say there but most of my symptoms seem to indicate Lupus. The problem is getting a diagnosis and finding which department will help me with this. I just seem to get passed from one person to another.

I see from your profile that we are of a similar age and completely identify with what you say about being (relatively) young yet having the mobility of a much older person. I wish you well and hope that you are feeling as well as possible at the moment. Thank you again for your reply.

[MusicalFurbaby in reply to Sky8888]

Thanks for your kind words, Sky—yes, I am feeling relatively well at present, apart from arthritis in the knees, which makes climbing any stairs difficult!

I totally resonate with your problems in getting a diagnosis. Diagnosis seems to be notoriously difficult for those of us with lupus-type symptoms, or autoimmune disease in general. My diagnosis took 8 years! Keep plugging away, and please do see the dermatologist, they may be able to point you in the right direction. I’ve seen a dermatologist before, and they were able to diagnose me with vasculitis, which is a part of lupus. So it all helps in some way.

You say you’ve been seeing your RA consultant for 10 years—are they helpful? One thing you can do is seek a second opinion, even just to get a set of fresh eyes on your symptoms. I got a second opinion, and it’s what ultimately led to me getting a diagnosis. Even though my first rheumy was brilliant!

Hope you get answers, and most importantly, some relief, real soon.

[Sky8888 in reply to MusicalFurbaby]

Thank you for replying, MusicalFurbaby. I think you are right about requesting a second opinion. Some Consultants seem content to let patients persevere with symptoms. To be fair, the RA Dept did do the ENA and ANA blood tests but seem to have ruled out Lupus (despite me having every other symptom) as the results were negative.

I hope that your knees improve soon. I have found that knees can be one of the more painful joints during a flare-up.

Best Wishes. I hope that that the climate where you are is beneficial, in terms of light and sunshine. It is constantly wet and cold here at the moment...Not good for joints or painful hands.

[MusicalFurbaby in reply to Sky8888]

I’m in Australia, so we’re in the middle of summer…so yes, plenty of sun here atm! You say your bloodwork was negative—have they considered seronegative lupus? All the best with the ongoing investigation, it can take such a long time to get a diagnosis, even when the answer seems so clear to us!

[Sky8888 in reply to MusicalFurbaby]

Thank you MusicalFurbaby, I will have a read about seronegative Lupus. I remember that when I was originally tested for RA many years ago, the blood tests came back as negative, despite the fact that I clearly have it. Best wishes to you.

[MusicalFurbaby in reply to Sky8888]

All the best and let us know how things turn out. 🌻🌈