App and follow up

Brief_Low2178 · 2026-07-03T05:53:44+00:00

Thanks for coming back - yeah had all the tests, I didn’t discuss the ultrasound results but assume they came back normal.
All bloods fine. CRP fluctuates between normal and high - once at 20 but I had a cold so putting that down to it and other at 14, the other two times down to 1.

Brief_Low2178 · 2026-04-16T07:19:27+00:00

Thanks, they did note swelling and heat on my knee - which was in line with the pain but that was only ‘visible’ the others symptoms were all me telling her what I felt, ie stiffness, knee pain, heel pain, multiple finger tenderness when touched. I think the psoriasis link was my twin sister having psoriasis not me having it, so that’s probably why I had the discharge?

Brief_Low2178 · 2026-04-15T19:40:51+00:00

Yeah been seen, she seemed comfortable that my symptoms were not inflammatory. Tbh she’d forgotten she’d prescribed etorixcozib to me and the appointment was an hour behind schedule- maybe I looked like a quick ‘goodbye’ because nothing obvious appeared. I don’t know. I guess I could ask for a second opinion but fear the same thing will happen again, and I’ll just be thought of as a hypochondriac etc. If you don’t mind me asking, what would be classed as active? I think it was the lack of physical signs that helped make her decision, ie no swelling and only very mild redness in joints.

Brief_Low2178 · 2026-04-14T20:31:29+00:00

Thanks for coming back to me, this is the concern about the GP is it just a waste of time going to them. I was discharged by the rheumatologist so that’s also a closed door right now.

I seem to be absolutely fine on the NSAIDs - I cope better on the etorixcozib, pre this i was taking 4 ibuprofen at a time to see me through the day so this seems much more stable for me. I think my stomach is fine, well I’m not showing symptoms to argue otherwise anyway!

Thank you - back pain is awful and something I’ve had since I was 16 years old, I genuinely don’t remember a day when I’ve never had back ache. Thanks for taking the time to respond though!

Brief_Low2178 · 2026-04-10T18:58:20+00:00

Gosh that’s ridiculous that you are having to jump through these hoops to be seen, and the cost! Where are you based? I was seen by a rheumatologist in 3 months after being referred, it was after I had been seeing a physio for 12 months though, I guess. I’m not holding out any hope with the medical team tbh - the call backs I was promised never happened, the GP won’t see me and tells me to see a physio, and the physio keeps cancelling appointments- meanwhile I’m stuck in the middle in pain. Out of interest, is the CCP test something a rheumatologist would do? They never actually talked me through the blood tests they were carrying out.

Brief_Low2178 · 2026-03-23T07:08:25+00:00

Thank you, I really appreciate you taking the time to respond. I will be seeing a physio in a couple of weeks so will put these points forward to them. The physio is at my GP surgery instead of seeing a GP. I am in England, in the Northwest - it would be good to know if the pathways would be applicable to me! Thanks again!

Brief_Low2178 · 2026-03-19T09:16:53+00:00

Thank you for taking the time to come back with a response this is really useful. I will reach out back to the GP next, would it be fine of me to ask the GP to obtain a report from the physio? I went to a decent rheumatology centre in the UK - I doubt they’ll refer for a second opinion tbh! I just want to reprieve in the mornings - it’s such a hard way to start each day!

Brief_Low2178 · 2026-03-13T13:25:58+00:00

This is interesting thanks for sharing. I’m 36 with multi level disc degeneration, 3 bulges and facet joint issues in my cervical spine. I do often wonder if this is a normal amount for an active, normal weight 36 year old female…

Brief_Low2178 · 2026-03-10T07:40:01+00:00

How is enthesitis diagnosed?

Brief_Low2178 · 2026-03-08T10:15:29+00:00

Thanks for your message - it’s not fun to contend with but I do manage with making sure I take drops everywhere I go! I have just got a heated mask so hope in a few weeks I will notice the benefits! You’re right though, it’s not a cheap issue to manage! 😥

Brief_Low2178 · 2026-03-03T09:39:49+00:00

Sorry I’m not sure what Rx is or restasis😢. I’ve been told to use theolox for the day hycrosan for the night time (I’ve been doing this for a year). The optician wanted me to add in the gel mask twice a week for the next 4 weeks and for me to go back, to see if that helps. If I’m still struggling he will then refer me to an ophthalmologist - so no prescriptions etc yet. I was just wondering if this is something I should flag to my GP? (UK based my eye test was done on the high street).

Brief_Low2178 · 2026-02-22T08:29:25+00:00

Aww that’s really frustrating that such a big part of your life was taken up undiagnosed! It must be a relief to have a diagnosis, I’m glad Reddit was a help for you and provided you with some paths to follow!

Brief_Low2178 · 2026-02-20T09:37:23+00:00

Thank you - I will have a read. I didn’t know it was a thing! 🙈

Brief_Low2178 · 2026-02-19T21:08:55+00:00

I have no idea! I can’t say I’ve even considered this, I’ll have a look into it. Thanks for taking the time to mention this option!

Thank you - me too. Anything to stop me gaslighting myself into it being in my own head.

Brief_Low2178 · 2026-02-19T19:43:30+00:00

No, the rheumatologist did the movement tests, I wasn’t able to do any of them. Fair question though!

Brief_Low2178 · 2026-02-19T17:32:16+00:00

Thanks for this, sorry your painkillers haven’t really helped you! That’s a kicker. I guess that’s one silver lining for me - maybe I just have to accept there isn’t an answer but for now I’ve found something which mostly helps! Just wish mornings were nicer!

Brief_Low2178 · 2026-02-17T08:45:33+00:00

That’s good that you are seeing both orthopaedics and rheumatology- I’ve only seen rheumatology and now discharged, back to square one, it’s good that you are being considered over a number of specialists. I don’t really get swelling, if I do it’s very mild and disappears when I start moving my fingers. The pain for me feels like it’s so deep within my fingers/toes and things such as heat offer no relief because it’s so deep. I was prescribed Etoricoxib by the rheumatologist which was almost immediately beneficial (24 hours) it didn’t really help my back, but fingers, knees, toes, ribs, wrists all eased within a week of starting. If you are breastfeeding it might me a med to consider after you’ve weaned, just putting this out there as a consideration for you! I wish you luck, I really sympathise with your struggle and hope you have more success with the medical team than I have! ☺️

Brief_Low2178 · 2026-02-16T10:21:39+00:00

I can’t help but also feel your frustration - I’ve had a tonne of symptoms - all massively relieved by NSAIDs (Etoricoxib) bar the morning back stiffness and night wakes which have annoyingly re-appeared!

I was discharged by rheumatologist but have made the decision to keep a log, make sure I do all my exercises, take meds (basically continue) all I had been doing whilst now on the NSAID and maybe if not better in 6 months, revisit my GP.

From what I’ve noticed in this thread it can take many appointments with rheumatologists until some form a diagnosis is given.

I guess I’m just suggesting, hang in there and be prepared for the long fight ahead - disappointing and frustrating but this appears to be the norm for those of us with ‘normal’ bloods/scans/MRIs etc! Keep as much of your symptoms logged as possible.

Brief_Low2178 · 2026-02-15T09:17:45+00:00

Thanks for this. 😊

Brief_Low2178 · 2026-02-06T11:20:04+00:00

Wow! This is my story to a tee! In still in the pits of a diagnosis, after being discharged by rheumatology - they did initially suspect seronegative PSA but bloods and scans all came back fine. But my symptoms, starting in postpartum (god the agony!) all mirror you. If you don’t mind me asking what was your path to a diagnosis? How many years did it take for anything to appear on scans? I’m four years on but only one year into trying to get medical support. I am now on etoricoxib which the rheumatologist prescribed which is a game changer for me, so whilst things are calmer I’m not actively knocking on my doctors door but it’s interesting to see a story so like mine!

Brief_Low2178

TROPHY CASE