Diagnosis: Hi everyone, so I had my appointment today... - NRAS

NRAS

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Diagnosis

Elephantmad profile image
11 Replies

Hi everyone, so I had my appointment today. Rheumatologist was nice, I had a thorough consultation and examination. Today I have no obvious swelling so she sent me for ultrasound scans which showed synovitis.

However because I have no positive blood markers she wasn't really up for giving me a diagnosis so she says I have seronegative undifferentiated inflammatory arthritis???? Has anyone else had this? What does this even mean? Is this because she saw no swollen joints?

She wants me to choose between sulfasalazine and hydroxychloroquine. So I've come away to do more research on everything and Will go back in 6 weeks.

Any advice welcome

X

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Elephantmad profile image
Elephantmad
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11 Replies

I am s- negative and it doesn’t show In blood tests but is still symptomatic. I don’t always have swelling but get burning and stiffness. Fatigue, brain fog is my biggest problem. synovitis can cause big problems with your joints. I get large synovitis cysts and have to have them drained. I’m on methotrexate. I also was on Hydroxychloroquine but unfortunately had a major allergic reaction to it. You have your diagnosis now so you can plan. You were listened to which is a result. Things can improve now 😁

Elephantmad profile image
Elephantmad in reply to

Thanks, it just sounds like a really general diagnosis. What kind of inflammatory arthritis? There are many. I guess I was hoping for something more clear

helixhelix profile image
helixhelix

It’s very common that you get a diagnosis of undifferentiated inflammatory arthritis to start with. It can take time, sometimes years, for the disease to really show exactly which one it is (there are lots). So undifferentiated just means it’s not yet developed into a specific one of them. And particularly with no blood markers (sero-negative) it could be several of them.

But the starting treatment is pretty much the same for all of them, so don’t worry too much about not having a more specific name. You have still been diagnosed with an auto-immune inflammatory arthritis. This is a slow process, so concentrate on looking after yourself.

Elephantmad profile image
Elephantmad in reply to helixhelix

Thank you that's really kind, I guess you are right, I'm a bit inpatient really 😊

Mmrr profile image
Mmrr

I too had a diagnosis of inflammitory arthritis to begin with, but was given hydroxychloroquine at my appointment. Apart from asking you to choose, why the delay for 6 weeks ?

Elephantmad profile image
Elephantmad in reply to Mmrr

She offered me two drugs to choose from and was going to write a prescription that day but I didn't want her to. The 6 weeks is a follow up for x-ray results and more blood results and to see how I'm getting on. She gave me her secretaries number to get prescription whenever I choose to x

Damaged profile image
Damaged

Hi Elephantmad unlike you I am seropositive but it does not change the treatment protocol , yet. The use of DMARDS (Disease Modifying Anti Rheumatic Drugs) would be the same. Or perhaps Methotrexate if severe. The issue will be moving to Biologics. Hopefully that will not be needed for you.

It is a matter of trial and error. I was on so so many drugs for first three years. Now only Xeljanz. The one that finally worked, for me. It is different for everyone. The immune system is so complex that often no two people experience this illness in quite the same way. Most drugs have side effects and many do not. It is up to you to decide what works for you.

Best of luck on your journey. Also some people start off negative it that can change.

Kateb18 profile image
Kateb18

Hi, I'm also sero negative without much swelling. I had a bit on hand joints and I had sore wrists before going on sulphasalazene. Flares were flu like with awful pain in all joints , unable to even move at all for a few hours and sore and feeling dreadful for about 12 hours. All this gradually faded on the meds. Flares which hsd been getting more frequent got milder and hardly happen now. I do get associated joing pain in hips especially , but the sulfasalazene seems to suit me. Good luck!

Elephantmad profile image
Elephantmad in reply to Kateb18

How did they diagnose you with negative blood markers? Thank you for your reply. They have offered me sulfasalazine or hydroxychloroquine but think I'm going to try diet first. I'm 37 and scared of going on drugs for the rest of my life. Think I may do a seprate post about this and get some opinions.

Hope you continue to feel well x

GranAmie profile image
GranAmie

good luck 2u. I found vit B12 dispelled brain fog and can be taken beside most drugs AFAIK xx

Brychni profile image
Brychni

Same as me!

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