The wrong forum!: rheumatologyadvisor.com/hom... The... - NRAS

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The wrong forum!

Brychni
Brychni

rheumatologyadvisor.com/hom...

The above article explains fully. Essentially I'm in the wrong forum; Undifferentiated Inflammatory Arthritis which, is my diagnosis, is not the same as Seronegative RA, RD PsA etc. Discussions here have been about not knowing what kind of Inflammatory arthritis I have when in reality it hasn't fully developed and may even 'spontaneously' disappear. I was right that monitoring should be with more ultrasound scans but I think it unlikely with NHS. The purpose of putting me on mtx is to see what happens 😟😟.

I spoke yestrrday with GP and rheum. nurse who explained a few things. The scan showed synovial inflammation consistent with inflammatory arthritis, stage 1. I've never shown Inflammation in blood tests. I do also however have osteoarthritis type damage in all the joints I've ever had xrayed. That's a lot of joints. The mri on my neck showed some sort of damage or 'thickening ' of the tendons. I have antiphospholipid antibodies commonly found in the blood of RA patients but especially lupus. I also have Primary Raynauds which can be a sign other autoimmune diseases to come, years later. Confusingly Secondary Raynauds is also a very common symptom of RA, Systemic Scleroderma and Lupus. I'm not really sure which I have though because it started when I was 16 and pregnant. (Yes, I know, too young) It only ever happened when I was pregnant: in my nipples! Then decades later when I first had the huge puffy knee for no apparent reason and the same, with bruising in my elbows, I suddenly started to get Raynaud's in my fingers. Over the past 5 years it's spread to my feet and sometimes ears too and attacks can last for hours.

Putting that all together it's clear (or not) that I have a nice concoction of autoimmune diseases and DMARDs are the way all of these things are tackled initially with the hope that the arthritis symptoms are halted and permanent damage reduced.

The nurse was brilliant. She listened especially about my migraine/cluster headache concerns. We talked through all symptoms, my concerns and came to agreement that as my chest xray was clear she would send me the prescription for mtx , (she 'counselled' me about the drug too) but that I could hold off taking it until my phone appointment on 25th.

9 Replies
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Brilliant news that you got to speak to a nurse / Dr who listened and helped you now you can be confident you are the right path, make a plan of action and start a medication that will help you.

I wouldn't say you were in the wrong forum, seems like any auto immune diagnosis can be a convoluted journey amd we can't be pigeonholed xx

Hope your weekend is a good one x

And you!

Errrm yes..... connective tissue diseases are a huge group of things and within that the inflammatory arthritides are a substantial chunk. More often than not they start off undifferentiated - as I had with years of grumbles - before they develop. In my day it was called early arthritis, and I went to an early arthritis clinic.

Doesn’t mean you don’t belong here if you want to be, as so much overlap between diseases and treatments.

Brychni
Brychni in reply to helixhelix

Thanks helix, confusion about what the diagnosis actually means has made it difficult to accept it- if that makes sense. And of course, as I talked during the 2 calls yesterday, my right elbow burned so viciously I hardly knew what I was saying any more. On the one hand diminishing my symptoms and then trying to describe the searing pains in my right arm-it went on for about 2hours and slowly went away when I took the dog out.

Helix I can't find your original reply regarding this, but what was the course of your diagnosis and then medication? Did things develop after you started medication? Did things go downhill rapidly?

I don't think there are many who have this experience of UIA.

helixhelix
helixhelix in reply to Brychni

In nutshell years of niggly bits, and then it hit me like a train and I went down hill in weeks to point could hardly walk. I am anti-CCP positive, but my inflammatory markers are always in “normal” limits. Whether I was anti-CCP positive at the start who knows as no-one tested me. Started MTX, had to add in Sulpha, then had to add in hydroxy as was then in remission more or less for 8 years. Then started to get erosions so now on MTX and a biologic and back largely in remission.

Brychni
Brychni in reply to helixhelix

That sounds horrendous, to be affected so severely and suddenly. Did you have classic symptoms when things worsened?

helixhelix
helixhelix in reply to Brychni

After the first couple of years of wandering aches then if knees like footballs and hands like a bunch of sausages are classic then yes! Plus flu’ey feeling and fatigue. But I wasn’t symmetrical for the first year or so, and I only started getting morning stiffness after about 4 or 5 years. In fact morning stiffness is my main/only symptom most of the time now....

Wow, you got info at last . I hope you stay chatting g here though, we had a lady go through the same thing as you and we are friends 12 years later!

Glad you got advice xc

Good to hear you have a label to stick on! Joining a party does make you feel better😎

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