NRAS
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Remission

If you’re showing signs of synovitis, when scanned, can you be said to be in remission? Also, can you evidence synovitis in one part of your body whilst it is absent in other parts?

I’m a bit confused. I am now seeing two rheumatologist and the rhuemy I’ve been seeing for the past three years has told me my disease remains very active ( and it certainly feels very active!) but following a visit to the biologic clinic I was invited too, another doctor told, when scanning my hands and feet ( only) that I showed synovitis in my left hand but that I was now in remission.

It may be that I’m just still a little ignorant of the disease but it’s left me confused.

Any advice would be greatly appreciated.

Thank you in advance .

Marie

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You can be in remission and still have synovitis in one joint. I’m in remission but I still have a small swelling in my right wrist. My CRP is currently less than 1. I’ll probably need another steroid injection in it in the next six months. All my other joints are fine. I see a different rheumatologist at the biologic clinic depending on when my appointment is x

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Thanks Ruth. I suppose what I’m asking is how remission can be stated when only hands and feet are scanned? Surely all joints would have to be checked before remission could be confirmed?

Marie

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I don’t know, sounds a bit odd x

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That’s what I thought? I have AS and RA. I’ve had both hips and both knees replaced and surgery in feet. My spine and neck are damaged as are my elbows and shoulders and i am in pain constantly. Without checking all these sites, and only scanning my hands and feet, I just can’t understand how remission can be declared. It is also contradictory to what my own rhuemy is telling me?

Marie

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Sometimes when you see someone who doesn’t know you or your history properly they don’t really listen to you or check out your joints. You might want to see if you can speak to your usual rheumatologist or rheumatology nurse x

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I had a call from hospital about 3 weeks ago, telling me that because my condition was so aggressive and difficult to control, I fit the criteria for a new biologic consultancy clinic. This was me attending. They changed my biologic and gave me additional diagnosis of fibromyalgia. She said my liver was showing signs of distress and reduced my Mtx by one tablet.

She scanned my feet ( joints totally gone) and hands, telling me there was evidence on synovitis in left hand and damage in wrists.

However, that’s all she looked at/ scanned and in the letter she sent to me and my gp, she stated that disease was now in remission.

My body would certainly disagree but it just Durante make sense to me being she only scanned hands and feet and hands evidenced synovitis ?

Am I just being daft?

Marie

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Marie - if your liver is in distress, consider doing MTX by injections. It made a huge improvement in my liver scores. Plus, more of the medicine is available by injection vs pills.

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No I don’t think so, if you were in remission then she wouldn’t have changed your biologic. Does your usual rheumatologist do any of the biologic clinics? At my hospital the rheumatologists do one week in 4 so I still see my original one when I go. You could query it with your GP and ask them to ask for clarification from the hospital. X

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No. This is a pilot biologic consultancy clinic, facilitated by the money nhs is saving from switch to biosimilars?

Actually, I’m now thinking maybe i was switched to a biosimilar? Whatever it is, she also suggested in the letter that this might be reduced from weekly, to 10 days?

I’m quite concerned that without thorough investigation, her instructions may trigger a flare or I sustain unnecessary damage- which I really cannot afford to do?!

I still see my own rhuemy in addition to the clinic but won’t see him again until December.

Marie

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Contact your usual rheumatologist, clearly the pilot clinic needs to be improved x

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I will, thanks Ruth.

Marie

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I am in remission for the last four years, but still get quite severe swelling through leaking synovial fluid in my left knee from time to time. The osteoarthritis in that joint doesn't help. Maybe you can find an answer on the NRAS website? It would be marvellous if you were in remission. All the very best.

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It totally would be. Thank you

Marie

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I'm in a similar situation, waiting to be called to start biologics so am now following you to see what i can learn! Rituximab? is proposed for me, what are you on? also i don't think hands / feet count toward DAS score but i too have synovitis probs in ankles. good luck

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I’m currently on enbrel and will be changing again within the next few weeks. I was previously on humira.

You’re right re hands and feet which, given the damage done to back, neck, elbows and shoulder, I was surprised all she did was scan hands and feet to decide I was in remission?

Best of luck with the biologic, I hope it makes a huge difference to you.

Marie

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