#thethemeisthereisnotheme

[novustrad]

Hi! I was just curious what your journey with rheumatoid arthritis has been like. I am being referred to a rheumatologist after having a positive ANA and high inflammation markers and my GP is positive it is RA. What was diagnosis like for you? How long did it take? What treatment options have you tried? Would you say that it’s worse now than in the very beginning or better? I’m just trying to understand what I’m in for and there isn’t a lot of anecdotal stuff that’s not months or years old that I can find. I’d love to hear about your journey, I really enjoy reading your posts about RA. Also, please don’t feel pressured to answer any of my questions! I know it can be taxing! Hope you have a lovely day/night! 🖤

Hi there!

I wasn’t too sure my posts where ever very helpful, but if they’ve helped you then I’m happy!

Edit: Just to be clear, this is based on my experience with HSCNI (Health and Social Care Northern Ireland (basically NHS))

I’m gonna take this a question at a time.

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What was diagnosis like for you?

Honestly? It was a surprise to me. I don’t know if I tagged my first posts, but essentially how it went was:

I was twisting bank statements to burn in our fire and that must have triggered the first pain flare in my knuckles. When I let that pass it moved to my index finger, then my middle finger and I just couldn’t use my hand at that point. I googled the symptoms, but I ruled out rheumatoid arthritis because I didn’t match with the symptom lists I found.

Long story shortish, I was told I needed bloods done. Mine came with high inflammation markers and “a specialised blood test” came back high too. I assume that was an ANA?

So I had to get an x-ray and was referred to rheumatology.

So. In July I think. I had my appointment with the rheumatology clinic and that’s when they said that the results are a strong indicator that I’m prone to rheumatoid arthritis flares like the one that started everything.

I can’t remember most of what he asked tbh. He used one of those ultrasound type machines to take a look at my knuckles and we discussed treatment options.

In the end, we agreed that immunosuppressants at this stage might be overkill because there was a chance I’d never experience another flare. But he said if I did then I should call my GP. Then he said he’d see me in a follow up appointment and that was that.

Until I started experiencing flares a month or more later.

How long did it take?

If I remember right:

May: Symptoms started.

Late May: My drs appointment and first bloods.

Early to mid June: Follow up bloods and referrals. X ray.

Early July: Rheumatology clinic.

I’m going to say I started getting more flares around September time, but honestly I can’t quite remember.

Late November: I saw an occupational therapist who talked me through things like exercises for my hands; assistive devices to help with dressing, cooking and bathing; how to preserve my joints and made a resting hand splint with this thermal stuff that was heated in water and molded to my hand. (A link to their video on Correct Hand Posture)

My follow up rheumatology appointment was to be by phone at the end of January 2022 but it’s been cancelled until they get back to me

What treatment options have you tried?

Mostly trial and error with compression gloves, wrist supports, ice packs and pain meds and anti-inflammatories. I got prednisolone (corticosteroid immunosuppressant) for three weeks (just until I got to talk to rheumatology) which did wonders for my hands. I can’t mind the dosage, I just remember that the starting dose of three tablets helped the most. I still felt fatigue but not quite as bad as without it.

Would you say that it’s worse now than in the very beginning or better?

It certainly looked to steadily be getting worse. I went from nothing to flares at least once a week in a matter of months. I want to blame it on the colder weather but I’m not so sure, honestly. I want to say that medications made it better but I didn’t have enough time to compare.

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Hope this helped. I tried to be concise with the details so hopefully this makes sense!

Have a good night/day!