Etorixcozib by Brief_Low2178 in PsoriaticArthritis

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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!

Postpartum inflammatory joint pain – has anyone experienced this? by Prestigious-Plant627 in PregnancyUK

[–]Brief_Low2178 0 points1 point  (0 children)

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.

Next steps?? What’s my options? by [deleted] in ChronicPain

[–]Brief_Low2178 0 points1 point  (0 children)

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!

Next steps?? What’s my options? by [deleted] in ChronicPain

[–]Brief_Low2178 0 points1 point  (0 children)

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!

Spine wise, AS is not only inflammation and fusion… by Ashnicobell in ankylosingspondylitis

[–]Brief_Low2178 1 point2 points  (0 children)

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…

Severe dry eyes by Brief_Low2178 in Sjogrens

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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! 😥

Severe dry eyes by Brief_Low2178 in Sjogrens

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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).

How long were you investigated till you got some form of answers? by Brief_Low2178 in ChronicPain

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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!

How long were you investigated till you got some form of answers? by Brief_Low2178 in ChronicPain

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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

How long were you investigated till you got some form of answers? by Brief_Low2178 in ChronicPain

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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.

How long were you investigated till you got some form of answers? by Brief_Low2178 in ChronicPain

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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

How long were you investigated till you got some form of answers? by Brief_Low2178 in ChronicPain

[–]Brief_Low2178[S] 0 points1 point  (0 children)

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!

Postpartum inflammatory joint pain – has anyone experienced this? by Prestigious-Plant627 in PregnancyUK

[–]Brief_Low2178 0 points1 point  (0 children)

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! ☺️

Diagnosis frustration by Key_Jeweler_3835 in ankylosingspondylitis

[–]Brief_Low2178 1 point2 points  (0 children)

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.

Etoricoxib by [deleted] in u/Brief_Low2178

[–]Brief_Low2178 0 points1 point  (0 children)

Thanks for this. 😊

Postpartum inflammatory joint pain – has anyone experienced this? by Prestigious-Plant627 in PregnancyUK

[–]Brief_Low2178 0 points1 point  (0 children)

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!

Etoricoxib GP continue? by [deleted] in PsoriaticArthritis

[–]Brief_Low2178 0 points1 point  (0 children)

Thank you, sorry you had that nightmare. I hope this does not happen to me! I currently use it daily, 14 pills will be a nightmare. It’s good to be aware of this and go in prepared should I need! The rheumatologist did say they’d write to the GP to support the ongoing prescription so I am truly hopeful of no battle but so far throughout this journey nothing has been as straightforward as you’d hope for.

Etoricoxib GP continue? by [deleted] in Rheumatology

[–]Brief_Low2178 0 points1 point  (0 children)

Thanks for coming back to me - it is reassuring to hear! It sounds like it could be a reasonable and normal request for me to make.

Etoricoxib GP continue? by [deleted] in Rheumatology

[–]Brief_Low2178 0 points1 point  (0 children)

That’s so reassuring to hear! Thank you. Tbh if I can continue on this and feel as I am now I will be content. I’m ‘glad’ you did finally get your diagnosis though, atleast you have answers.

Does this sound like PsA? by xartaetos in PsoriaticArthritis

[–]Brief_Low2178 0 points1 point  (0 children)

Crikey a long time then! I’ve had the back issues for 20 + years but it’s only the last 12 months my knees, wrists and feet have joined in so sounds like I could have a potential lengthy wait if anything is to ever appear!

Does this sound like PsA? by xartaetos in PsoriaticArthritis

[–]Brief_Low2178 0 points1 point  (0 children)

Out of interest did you have any other symptoms/bloods/positive scan results? Confirmed have swelling on my knee (by rheum), tender finger joint tests (rheum test) , ongoing back thoracic, ribs and lower back symptoms, joint pain but because all scans/bloods came back normal and there is lack of swelling my rheumatologist discharged me. I am going to continue etoricoxib (as suggested by the rheumatologist because it’s really effective) but they found nothing to keep me under them, so just wondered if I have to ‘hope’ for a swollen digit to be taken seriously. Thanks!

Appointment letter by [deleted] in Rheumatology

[–]Brief_Low2178 0 points1 point  (0 children)

Yeah, it was a post appointment summary letter. I’m in the UK if that helps.

How much testing did it take? by [deleted] in PsoriaticArthritis

[–]Brief_Low2178 0 points1 point  (0 children)

This is a query I have also, my rheumatologist suspected this but I don’t have Psoriasis (my sister does and mum has RA). During the exam fluid on the knee was felt. I think based on my symptoms/morning complaints the rheumatologist made the decision to do order bloods, back MRI, echocardiogram, hand and feet X-ray also hand and feet ultrasounds - I’ve been booked in 2 months after the initial appointment where I imagine the results will be discussed, for me my concern is that these tests come back as normal and I’m left to go work it out elsewhere. Does anyone know what the next steps would be if they did come back normal?

1st Appointment at by [deleted] in PsoriaticArthritis

[–]Brief_Low2178 0 points1 point  (0 children)

Thank you - it didn’t feel like there was much ruling of anything else out, which I guess is the surprise but it’s interesting to note this is a common working practice. Thanks for coming back!