Posted Sun 18 Oct 2020 4.02pm by XantheFar
Hi in 2016 I was diagnosed with RA on the grounds I had a raised anti-ccp level. I was treated with triple therapy but was allergic to the Dmards. I was then seen again and told I had no evidence of RA, that the pain in my elbows looked like tennis elbow on the left and golf elbow on the right and though I had fluid on my knees and ankles my joints looked okay so I should go away an forget about it all - by this time I could hardly walk!
I complained, saw another consultant who did a blood test and confirmed I tested positive for the HLA-B27 gene. My father we believe did have psoriasis and I have a history of scalp problems.
The disease seemed to calm down in 2018 but now I have severely swollen ankles with what looks like fluid round the joints, swollen Achilles tendons on both sides (i have had this on and off for a long time too), swollen knees and painful ankles. My toes and fingers are also painful and my hands swollen. Despite me and other people saying my fingers are swollen the rheumatologist tells me they aren't as they are the same size all the way down and don't have swollen areas around the joints. All I know is I cannot get rings on my ring finger that I used to wear on my index finger!
I have also had back pain for many years along the sacro-illiac joint. My private physio treating me for muscular skeletal issues as I was told my constant shin pain was due to shin splints has written to the consultant to say in her opinion none of this is skeletal and is instead related to some kind of inflammatory process.
I have been put on a short course of oral steroids again which don't make a massive difference something that again I'm being told shows it can't be inflammatory except they have no idea why I have accumulated all this swelling around my joints.
I'm sorry for the lengthy post. I feel my symptoms and blood results point in the way of PsA but I feel like I'm being fobbed off as my symptoms don't match the usual RA spectrum. When I was initially sent on a course to learn to live with my rheumatoid arthritis before they decided I didn't have it, they showed us the signs and symptoms of the various inflammatory arthritis and I said I thought my symptoms did not match RA but did match PsA. I was told I was being silly as I could not have it as I did not have any obvious psoriasis!
Posted Sun 18 Oct 2020 8pm by MrsR
Hello, don't stop complaining. Document all your symptoms, take photos! I also frequently reported swollen fingers but at each consultation I was told no evidence visually of swelling, felt like I was being dismissed and was going round in circles because of age and post hormonal after baby #2 wasnt really getting anywhere. I eventually managed to get referred for a scan, they offered me a ultrasound on my hands and wrists. It showed inflammation around my finger joints and also carpel tunnel both wrists. Good luck! It's so ftrating but you will get there!! X
Posted Sun 18 Oct 2020 9.19pm by XantheFar
Thank you. This makes sense. I’ve also got carpal tunnel syndrome which was dismissed as irrelevant
Posted Mon 19 Oct 2020 11.32am by Mac
If your getting inflammation around your joints, i can not see why they can't come up with a diagnoses, especially when showing on your ccp. If it where me i would go back to my GP and get a referral for a different rheumatologist. Did your GP not give you an anti-inflammatory for the swelling.
The HLA-B27 which can point towards AS arthritis isn't prove that you have it, just confirms it with other evidence (alot of people have the gene and no arthritis). This is what i was told when i got my diagnoses if memory serves me right. If your having problems getting other prove of AS along with your HLA-B27 blood test, just stand up in one spot for 5 or 10 mins before you go for your appointment, with me if i do this the bottom of my spine swells. Also if you can get an appointment first thing in the morning, it should also have a good chance of being swollen.
With all the swollen joints you say about, you shouldn't have any problems proving your case.
Good luck Xanthefar.
Posted Mon 19 Oct 2020 1.54pm by OhNo_NotAgain?
One of the difficulties faced is that there is not a definitive test for psoriatic arthritis, in the way that there is for RA. It seems to be diagnosed by eliminating other forms, and by association with psoriasis.
I know I have Osteo Arthritis in places and seem to have early onset PA in fingers and hands..
But another consideration for me was - what different treatment would I receive for PA as opposed to RA in any case ?
Posted Mon 19 Oct 2020 2.10pm by Mac
Six of one and half a dozen of the other i think. I'm no doctor though ;).
Posted Tue 20 Oct 2020 8.28am by XantheFar
Yes but in this case it wasn’t either or it was you no longer fit the RA profile so we are going to discharge you and leave you with no treatment at all :(
Posted Tue 20 Oct 2020 2.24pm by Mac
I'm sure they wouldn't discharge you, if you have proof of swollen joints.
Posted Tue 20 Oct 2020 4.47pm by XantheFar
What they said was I had.clear swelling but they thought it was the tendons not the joints so it couldn’t be RA so they did indeed discharge me. I complained and saw someone else who did the HLA-B27 test and re-admitted me. I’m on another short course of steroids currently.