Hi all, finally seen in rheumatology clinic yesterday but no further forward..
The consultant there is well known for expertise in lupus so I was holding out hope for some answers or a greater understanding on my part, of what the future looks like. However was seen by registrar instead who ordered further blood work and sent me for chest x ray as I'm now on steroids for problems with my lungs. Additionally I have costocondritis (inflammation of tissue between ribs). This is all painful and there are further symptoms and consultants' views all pointing towards lupus/mixed connnective tissue disease, however where I'm really suffering is with joint pain. Naively I hoped yesterday would be the beginnings of a treatment plan.
On examining my joints, he told me he couldn't see or feel inflammation so he's reluctant to start me on hydroxy. Instead have 3 month course of more naproxen, which I'll start when I finish the prednisone.
I have a very high rheumatoid factor result, but negative for ANA. He said in his mind this made lupus or connective tissue disease very unlikely. This is different from what other consultants have said. I felt like crying when he said he couldn't identify inflammation in joints. If there is none, why am I in so much pain? He said sometimes a high RF result was a red herring and some people have it but no symptoms. However I do have symptoms! Just none that he can feel with a cursory examintion. So frustrating.
The further blood tests are for additional markers of inflammation so we'll see what that brings.
Has anyone here had a lupus diagnosis with a negative ANA result but a positive RF?
I have very painful hands and wrists and also thought how can I be in pain when there's no particular swelling normal crp etc but rheum told me last wk that's how lupus is and it doesn't necessarily cause swelling or a raised crp. My hands and wrists were so painful when he examined them but there was nothing significant for him to see. As he said tho, that doesn't mean there's nothing wrong.
It's very frustrating, I had seen 2 rheumatologists previously and diagnosed lupus and aps then moved away and got referred to new hospital and there was told there was nothing wrong with me!!
Have since moved to another hospital as wasn't happy and surprise surprise I still have lupus and aps! And all the joint pain and fatigue I've always had.
Hi - I was diagnosed in 2011 with seronegative RA in strength of a weakly positive RF and very high inflammation markers, with clearly visible synovitis in hands. Ever after this, once I started methotrexate etc, my autoantibodies were negative and I've never had any swelling visible since, despite severe pain in joints sometimes.
Now in a new hospital I've been rediagnosed with Sjogrens as my probable primary disease by very positive lip biopsy. This causes much arthritis similar to RA in that it affects hands and feet bilaterally often but not much swelling or erosive damage to joints. So can easily be confused.
I'm not moving hospitals again now!
This is also same with Lupus of course but unlike Lupus, Sjogrens often presents with high Rheumatoid Factor as well as or instead of ANA. My ANA has now swung clear positive and my RF is negative - nearly six years on since my symptoms began.
Please don't let the rheumy fob you off without a fight if you don't agree with their diagnosis. I'm guessing the steroids are also a trial to see if your joint pain clears up or lessens significantly now as this is usually the method they use to decide between OA and Fibro and inflammatory arthritis of any sort. Sjogrens and PsA and AS (spondyloarthritis) and various types of Vasculitis can cause lung problems too and can be seronegative. So if I were you I'd broaden your search to include these too rather than thinking only of Lupus.
By the way many in the NRAS HU community don't have much visible swelling or high ESR/ CRP and the way theirs is confirmed is by ultrasound or MRI. Has this been done for you too? Sometimes rhuemies can't always feel swelling. Hang in there and hopefully things will become clear for you, as they have for me eventually.
Thanks for this great reply. I think I may do some wider research. I have focused on lupus/mixed connective tissue as this has been the focus of my other doctors so far.
One thing I forgot to mention is that I will be having an ultrasound done on my hand where the pain is worst at the moment. He agreed to arrange that for me.
All in all I shouldn't be so negative about the appointment. I've had further bloods, ultrasound arranged, chest X-ray and a followup appointment for Feb. I think I just need to be patient.
Would it be ok to send you a PM about something?
Yes that would be fine Westgirl. Glad to be of use - and yes patience comes hard for me too but it is essential in this autoimmune malarkey I'm afraid. To me it seems your rheum was just being thorough and that's a good thing as you don't want to be misdiagnosed and put on hard core meds unnecessarily. X
Ps you need ultrasound or MRI of hand when you are clear of steroids!!
Steroids just for this week only!
Oh good - hope ultrasound not for a while though as needs to clear out of your system as I learnt the hard way. Don't take any anti imflamnatiries beforehand either or painkillers. Learned the hard way by yours truly!
Hmm. Ultrasound appointment came through today - it's a week on Monday and got a few more days of Pred to go.
How long to clear the system?
Not sure - mine was back within a week of stopping steroids and nsaids when I was diagnosed with RA five years ago. But no ultrasound - just rheumy squeezing and visible swelling in the relevant hand joints. Did steroids make any difference to your swelling and pain?
It really did. The pain in my fingers and wrist completely went this week. Pain free for the first time in months. This is how I want to feel all the time. That's me finished my course of steroids and ultrasound is a week on Monday. Feels totally counter intuitive to be thinking this way, but I really want that scan to show inflammation. Nuts, isn't it?
I just want clarity and to have a plan for treatment.
Thanks for your reply - that is interesting to me. I wondered if it might keep on getting worse as it has been, before I start seeing actual swelling and I can't bear the thought of the pain continuing. Worst of all, the examination brought on a lot of pain later in the day :/ his gentle manipulation of my fingers caused significant pain that night.
I know I shouldn't get so down and probably having an over sensitive reaction. I think I just felt like him saying there was no inflammation, was like him saying he didn't accept I was in pain. That's probably not the case...