Disappointing rheumy appt

[Westgirl]

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?

[Sara_A]

Hi,

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.

[Hidden in reply to Sara_A]

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.

[Westgirl in reply to Hidden]

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?

[Hidden in reply to Westgirl]

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

[Hidden in reply to Westgirl]

Ps you need ultrasound or MRI of hand when you are clear of steroids!!

[Westgirl in reply to Hidden]

Steroids just for this week only!

[Hidden in reply to Westgirl]

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!

[Westgirl in reply to Hidden]

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?

[Hidden in reply to Westgirl]

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?

[Westgirl in reply to Hidden]

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.

[Westgirl in reply to Sara_A]

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...

[EOLHPC]

Hello westgirl: you've got some great replies, and there is little I can add...other than to say: WELL DONE: you made it through a v tough consultation while feeling v poorly, which is a vvvv hard thing to manage. Am giving you a big gentle hug.

This registrar's interpretation shows a degree of experience & insight, in that he at least recognises the costochondritis & is conducting further tests + imaging. But, otherwise, I think his comments indicate lack of experience & confidence. So, I urge you to consider pushing hard to see the head consultant at your next appt. if I were doing this, I'd ring his secretary about making sure I'm actually booked specifically to see him...at my last lupus clinic, I saw our wonderful lupus specialist nurse who was so determined I'd see our chief consultant next time, that she TOOK me to stand over the reception guy who fixed my next appt 😆

Am sure you'all get more great replies

🍀😘🍀😘 coco

[Westgirl in reply to EOLHPC]

Thank you. I did wonder about how to ensure I see the consultant next time and how to go about that without being a pest. The registrar did say he was going to the consultant at the end of the clinic so that is helpful. I forgot to mention that he also ordered an ultrasound of my hand to look for inflammation, I think mainly because I was protesting a little at him saying the RF could be a red herring.

[EOLHPC in reply to Westgirl]

👍👍👍👍 one of our most experienced forum friends has politely insisted on seeing the chief consultant when it became clear she was about to be seen by another lesser medic...they said: ok, but you'll have to wait. She said: fine! She sat in the waiting room for some time but did see the chief...who was great about it all 💪!

There are various ways to get to see who you really want to see 😉

But, on the other hand, I have attended a clinic expecting & hoping to see a particular consultant and got another instead whose insights were breakthrough quality 💡💡💡💡

There's little all that straightforward about the diagnostic & treatment process 😏

[PMRpro in reply to Westgirl]

I was going to say this even before I read this far down: it is policy in many clinics to have the first appointment done by a lesser mortal who arranges for various tests that need to be done on the basis of the examination and symptoms. The hospital can order a lot of things the GP can't.

Then, once the results are available - and there may be things added by the consultant at the case discussion - the consultant can look at them all and make a more informed decision. The effect of this is that the consultant can see twice as many new patients - instead of seeing every new patient twice to get to that stage he has only seen them once.

I had it the other way round - saw the consultant who sent me off for various tests and when I went back for follow-up 6 weeks later I saw someone who really hadn't a clue. He was actually a "GP with a special interest", not even a registrar who has done his rheumy training! He was totally confused and went to find "the boss" - who wasn't much help either but it was a total waste of the first appointment for both of us really.

And lots of doctors will think aloud. The most important aspect is to emphasise the symptoms during the history taking. Having a clear list of your own (not too long) to hand over sometimes helps there. Then they can't deny knowing about something later.

As BC says - I would politely insist on seeing the head honcho. I don't think it is an unreasonable request until there is a rather more solid suspicion even if there is no fixed diagnosis. The trouble may be if the boss is away at a meeting or they are totally overbooked (usual state of affairs). Though the chances of seeing the same person next time are small...

[Westgirl in reply to PMRpro]

You speak absolute and perfect sense - thank you. I'm starting to get some perspective on this I think.

[PMRpro in reply to Westgirl]

It's a lot easier to have that perspective when you worked in the system as I did.

Things will get clearer as time goes on - it's after the next audience with his eminence that you can assess whether he is the one for you!

[Westgirl in reply to PMRpro]

Lol @ "his eminence"

[4373]

Yes, but unlike you my signs were patches of discolored skin, not bruises and only coming on one at a time, sometimes as a rash. Intense insomnia, bloating and foggy brain. Aches and pains in neck and shoulder from a car accident. Funny muscle weakness between knee and ankle and a horrible deep pain coming and going from left forearm. Since I changed my diet all of this seems to have disappeared except for the insomnia. After reading these posts, I realize how fortunate I am, but also how a diagnosis is very, very difficult. Since I nipped bronchial asthma, which I've had all my life, through environmental avoidance and a clean diet I am trying the same approach with this. Aches and pains gone along with muscle weakness. Go figure?