What's in a name?

I was diagnosed with inflammatory arthritis in 2009. My rheumatologist believed I had seronegative SLE. Due to the hospital being a long distance from my home, I was referred to my local hospital. My current rheumatologist feels that my joint erosions indicate an aggressive seronegative rheumatoid arthritis. When she was on sick leave, I saw her colleague who queried SLE again and felt it was likely I have SLE in addition to RA. I saw my usual rheumatologist who said the tests are expensive (!) and that if they were negative once, there was no point in repeating them. She said, whatever the 'name', the main concern is that we are controlling and managing the symptoms. As it happens, I get very good treatment and I'm on methotrexate, leflunomide and humira which has dampened down the majority of my symptoms, although I'm still not as good as I'd like to be.

I have regular blood tests and my kidneys are working well. I also have yearly ECGs. I am being well monitored and have no major concerns about my treatment or diagnosis. There's just this niggly little part of me that wonders if I should push for a formal diagnosis.

Any thoughts would be much appreciated. Thank you.

11 Replies

  • Hi Crashdoll. I know exactly how you feel and that 'niggle' may never go away. After 25 years of inflammatory disease with no antibodies and soooo many blood tests repeated many times plus tertiary review by a prominent Lupus unit, it seems that there are some patients (me!) for whom a definitive diagnosis does not exist. My dx is now called UCTD with a Lupus profile but I have lots of 'oddities' that relapse and remit with the flares and have the Doctors scratching their heads.

    A good Doctor will remain alert to new symptoms and a less predictable disease course and treat accordingly. It sounds as though you are receiving excellent treatment which I hope is reassuring.

    Best wishes. Clare

  • Hi Crashdoll

    I understand how you feel as I'm similar to your last reply from Claire!. It must be confusing and not helpful that each time you've seen a different Rheumy they have given you a different name for your illness. Hopefully you'll be able to stay with one Rheumy and will get continuity . I have been told that I may never have a definitive answer after 27 years of trying so the important thing is to focus on treatment and I like you are grateful I'm getting the right drugs. It's important for us to have Rheumy's with open minds and willingness to keep an eye on things, not all are like this!. I'm so pleased as I'm sure you are to have met similar patients on this Forum, we're no longer alone!. Hope I've helped?. X

  • Thank you for your replies, very kind words and helpful too. I have private health insurance through Bupa and was entertaining the thought of a private opinion. However, I'm a little loathe to voluntarily put myself through a lot of poking and prodding. Also, there's no guarantee that they would be able to give me a definitive "yes it's lupus" or "no it's not lupus", so I'm not sure there's any point.

  • My rheumy has explained several times that RA and Lupus are both what committees of rheumies decide to call them - as opposed to a disease such as TB which is always a black and white diagnosis.

    He said he uses the term RA with me very loosely because most people with RA have a more mechanical form of the disease than I have so far - mine seems very much confined to my nerves and connective tissue and vascular system rather than joints.

    But because I once presented with classic synovial swelling in my hands and wrists, RA becomes a given and the rest is up for debate as RA rarely goes away forever - especially if you still have other systemic symptoms as I do.

    I think the seronegative forms of these diseases are always very much harder to pin down. I know mine is a shape shifter with lots of connective tissue extras joining in but it is still eluding my doctors.

    I think Misty and Clare are both right to say that at some point it's better to accept the nebulous nature of seroneg autoimmunity and just be thankful to have a forward thinking rheumy as you do. I know that this whole seronegative shape shifter has played havoc with my life, my career as an artist, my role as a mother and partner. I don't have erosive damage and I'm not young like you are. But I do have young adults and a partner who depend on me a lot so I have to learn to accept my shape shifting RA/UCTD/Sjogrens/Raynaudsfor their sakes as well as my own and try to live more in the here and now.

  • Very good question crash doll!

    I was at the Vasculitis Patient Symposium at the weekend where there were Eminent Dr's from all over the world speaking. I had a quick word with one of the Prof's attending and she advised pragmatism, treat the symptoms and don't worry about too much about what the disease is called.

    Whilst I can see the benefits of such a viewpoint it is much easier to say than do. I think that Dr's are used to uncertainty and know that medicine doesn't yet have all the answers whereas us patients want certainty.

    I have been unwell for 3 yrs, my diagnosis has changed from ? GCA to ? SLE/ connective tissue disease to " significantly psychological " and now to ? Behcets syndrome ( a rare type of vasculitis very difficult to diagnose, average time 10 yrs! ). After travelling all over the UK I now have a very good local Rheumy who acknowledges she doesn't know everything and is prepared to seek advice from others, I am waiting on a capsule endoscopy and depending on the results will start on 1 of 2 proposed treatments.

    I think if you have a good Rheumy who takes you and your symptoms seriously and is giving you good treatment then think long and hard about rocking the boat. If anyone out there feels their symptoms are being dismissed and not treated then I would say do whatever, go wherever and keep pushing for diagnosis and treatment.

    At the conference at the weekend the Dr's were very upbeat about ongoing research and new treatments for auto immune disease. I think in 10 yrs time we will know a lot more and there will be better diagnosis and classification. We just need to hang on in there!

  • Hi Keyes

    Interesting thoughts you gave about the need for a diagnosis which I've found helpful . I'm like you have travelled all over the country for years but can't do it anymore and your thoughts will help me view my New Local Rheumy differently. Haven't been very happy with him!. Thanks for sharing the info from the Vasculitis Conference, gives us heart to think of possible breakthroughs in 10 years time. Good luck for your camera test , hope you get good treatment .X

  • Thank you Misty14, here's hoping for better times for all of us! Xx

  • I often think it is because the world of Rheumatology had heavily invested on research on specific antibodies and the diagnostic "criteria" of SLE built around these antibodies, it's difficult for the Rheumatology experts to see things in perspective as we, patients do. I also very much doubt these antibodies are the "absolute" indicator for SLE..SLE aren't a single disease and diseases happen regardless of any care for "antibodies".

    There are a number of SLE-related markers which would be different from one patient to another, from one racial group to another. Eventually, this blind worship for antibodies would be phased out replaced by genetic tests to check your inflammatory markers when choosing what treatment would be most effective in your case. Establishment would be hard to change and they still seem to believe there are their PURE SLE which exists but within a decade, things will start to change. They would probably eventually have to swallow their ego and pride and submit to the advance of genetic science.

  • There is a lot of research into which genes are implicated in auto immune disease. Unfortunately, unlike haemophilia or cystic fibrosis, there are many genes involved and not just one. Certainly the talk at the conference at the weekend was very much around trying to find targeted treatment for each individual and novel disease markers. I think there will be big changes in the next 10 yrs.

  • From what I read on this site, physicians in the UK seem to get much more specific than physicians in the states. The thing that I find incredible is that there is no mention in my diagnoses that my adrenal glands failed. Neither is there any mention of a cracked upper rib. Both Osteopenia and Osteoporosis are listed. I could be mistaken but I thought the first preceded the second and would drop off once Osteoporosis was established. Crashdoll, I would let it alone as long as you feel you are being well monitored. It might be interesting to take the same set of blood tests, EEGs, EKGs, bone density tests, etc. to 10 physicians and see whether there was any consensus at all.

  • I think you are being managed well. I have SLE and it dominates my life , I have loads of medications and there are good and bad days/nights. Also some RA - 'rupus' it's called. However seeing a specialist is unrewarding as they can't really do more than they are, and being married to a surgeon, do understand that if they can't cure you, it's frustrating for both, hence its years between my reluctant visits.

    My response?! People don't understand your answer to 'what's wrong with you?' So it's entirely for your knowledge to have a definitive diagnosis . All the very best, you have a terrific attitude.

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