Does anyone have a similar journey? Any advice or suggestions?
Sorry it’s so long winded! It’s my first time writing in a forum.
My diagnosis is very confusing. For years diagnosed with osteoarthritis (2009) by Rheumatologist, in dip & pip finger joints (Heberdens / Bouchard’s Nodes) - told just unlucky early onset & likely won’t cause problems & pain would burn out. then over the last 3-5 or so years pain & inflammation progressively worsened with more visual deformity of some fingers getting worse, and fine motor functioning getting worse. . Dropping everything. Just got on with it as thought no treatments. - found work arounds for activities - able to cope with pain if kept my mind positive & active and avoided traumas, knocking fingers. Used some tapes, didn’t find finger braces useful - did finger exercises..
Then little finger swelled right up during Covid times & the few fingers with no deformity started to get red/hot/pain. Everything so much more painful. Keeping me awake, systemic analgesia not effective so didn’t take any..
Refered to different hospital (moved areas) to plastics/orthos - talked about denervation, joint replacement - I felt I was a bit young for this & can’t find anyone who has had this to know what patient response
Is really like. Realities of these procedures, etc
I was referred for steroid injections & the doctor doing this under USS guidance was surprised I was not seeing Rheumatology as he felt I had classic symptoms of an inflammatory arthritis - sent me an urgent referral suggesting either erosive OA, or zero-negative inflammatory arthritis, but he felt likely psoriatic arthritis.
I have never had psoriasis but I have 1st degree relative that has - all be it fairly mild. I have started my journey on DMARDS - didn’t get on with Sulfasalazine - struggled with side effects (taste, mouth ulcers, strange feeling in mouth ++) kept on them for at least 4 months & felt they weren’t helping so Rheumatology advised stop & re-referred for repeat X rays & ultrasounds, he was still querying diagnosis OA or PsA - he thought let’s see what happens once off - if no change in symptoms maybe re-think diagnosis..
Once I stopped Sulfasalazine my symptoms massively increased - I am assuming this was a ‘flare’ & I have never experience so much pain / swelling of my pip & dip joints from my fingers, to point of finding unable to do my duties at work - I hadn’t realised the Sulfasalazine was actually working! As I will always have ongoing pain from previous joint damage (Pencil in cup deformity has been mentioned & gull wing deformity), i had my repeat X-rays/USS & got phone
Call next day from Rheumatology Consultant advising immediate start on Methotrexate as lots inflammation on uss.
7 weeks on new med & the acute flare has almost fully gone with residual swelling still in left ring finger (still quite painful) but now my usual level of pain if that makes sense?
I am much happier with the Methotrexate - I find this much more tolerable for me than the Sulfasalazine was. Our bodies are so unique - how we all have different experiences on the different medicines. I am hoping my bloods continue to be good & my liver behaves.
I am lucky that the condition at the moment is mainly just in my hands (PIP & DIP) - although have had some neck
Issues in past & when young had so many issues with lower back pain & constant ‘burning’ in hips.
Reading about PSA I am still a bit confused about diagnosis - but as I feel MTX is helping not sure that matters?
Does anyone else have similar journey or problem mainly with their fingers?
Sorry this is so long winded - think just writing it all out is helping - I feel a bit overwhelmed that I should have shouted louder much much earlier rather than stiff upper lip get on with it mentality & all the irreversible damage in my fingers may have been avoided.
Thanks for listening (reading) - reading others stories is very humbling - & I’ve got support from other peoples posts so thank you x x
Posted Mon 19 Sep 2022 10.21 by michmo
i have been diagnosed with carpal tunnel for which im awaiting an operation.my gp independently from the specialist who confirmed classic carpal tunnel had requested an xray.he has confirmed additionally that i have arthritis which i always suspected.its something i have ignored for years but the pain got to the point where i couldnt sleep.i think my arthritis is linked to my psoriasis.in my situation and age i think i will have to retire due to nature of my work.
Posted Thu 9 Nov 2023 06.07 by Sunshine45
Hi there, I don't know if you still use this site, but I have exactly the same symptoms! All DIP joint and some PIP joints are extremely painful, cant open jars, doors, use of knife properly etc. Toes/feet also affected but not as bad. Went to my GP who sent me for hand xrays and blood tests, Week letter I had a telephone call saying he had referred me to Rheumatology. I went the following week, had scans on hands and feet, chest xray and repeat blood, He looked at scans and diagnosed Psoriatic arthritis straight away. I am starting my first dose of methotrexate this Friday 😬 slightly worried about side effects, but hopefully it eases the pain. Hope you are doing well 🙂
Posted Thu 9 Nov 2023 06.51 by michmo
Obviously arthritis has no cure. I'm 61 and my fingers are becoming disfigured. The only thing I do to relieve the symptoms are an improved diet.
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