I went to hospital this morning to discuss options since being taken of sulphasalazine. My nurse specialist was suggesting a different dmard having checked my bloods and completed das (now down at 3.85). Then my consultant came in examined my hands only, said she could still c my knuckles and looking at them noone would know I had rheumatoid. I had already explained that id spent since thursday on sofa just relaxing as I felt so exhausted, nauseous and sore.
I then showed her a photo taken last wed which I thought showed top of my hand and wrist swollen as they were hot, red and very painful. She said its not inflammation but a rash. Im therefore booked into her joint dermatology/rheumy clinic in april.
Had to have loads more extra blood tests today (only had regular ones last thursday) so now totally confused what she is looking into - anyone got any ideas? She did consider sjorgens but from last years tests ruled that out.
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Hi you sound like you are going though the mill at moment. I know how concerning it can be when your not sure what's going on in your body. I can say try not to stress to much coz that seems to make RA worse .xx
Thanks, I will try not to let it worry me - I know I should be positive about the fact that she is investigating further rather than just ignoring me. She was pleased with the fact that I took photos as she said it greatly helped them and told me to bring the pics with me when I see her at the combined clinic too.
I have plenty of times had pain in joints, real agonising make-you-weep pain, and no swelling at all. That said, if she decides it is something else, and treats it and things improve that won't be a bad thing either. Keep taking photos.
She picked up on the fact that my joints are worse by the end of my working week (wed) and ease after the weekend of taking things steady - Im not sure whether she was thinking of pallindromic.
I guess my confusion is based on the question - if she thinks Im in drug induced remission (largely/on the verge of) then why do I still need pain relief and why cant I use hands to grip sometimes, and why is the morning stiffness getting worse and my ESR rising once more etc? maybe I need to pose a separate question on here - if you start on DMARDs within first few months of onset of symptoms could drug induced remission mean you dont need pain relief to lead a "normal" life?
There are other types of inflammatory arthritis that can affect your skin - Psoryatic Arthritis is the main one that springs to mind. She's not saying there's nothing wrong but just that it might not be RA. If it is PsA then the meds would be along the same lines but it might explain why some dmards might not work well - so try not to fret too much. Tilda x
Thanks for this feedback. I have seen lots of folk discussing PsA, but didnt really understand what this was. Maybe I need to take a look. She did revisit my original blood results (rheumatoid factor was 107) and said she is still convinced I have rheumatoid, but said she felt something else is going on which is causing the pain and "rash."
She left me with info on hydroxychloroquine as possible next step if my ESR and pain still remain high when see her in joint dermatology/rheumy clinic on 22 April.
It is possible to have both. Loretta does. I think it might be unusual to have a positive rheumatoid factor with PsA though - especially quite a high one. I don't really know enough yet myself but my rheumy says same about me re RA for now but things could change and keep an open mind. Worth reading up about PsA and other types of inflammatory arthritis. I have a low positive rheumatoid factor of 24 and I rarely had much visible swelling even when pain was absolutely terrible but I guess your consultant would know what to look for and if she runs a dermatology rheumy clinic she probably knows a lot about PsA. Tilda x
Thanks. Took a little look at psa last night (bed time reading is such fun!!!) And I can c y she is querying this as my finger did swell like a sausage last week.
Although my rh factor was 107 she still investigated post infective arthritis and a few other things last year because my nan had rheumatoid arthritis so she said I could have this in my blood like an antibody passed down through the genes.
Guess I will just have to keep taking pics and hope the rash I showed her was just allergic reaction to the sulphasalazine and thus willl not return and I will just settle as weather eventually warms up.
On looking this up it does say lower back pain and cocyx. Well I have always had a weak lower back since my 2 caesareans so hsd ignored it. But if I sit on sokid chairs with correct posture I do get bad pain in my coccyx but have never said anything as put it down to limited padding! I wonder if I should mention this too.
Also this morning I started to question is my pain/stiffness same as when first diagnosed. Thinking back I could not move joints ad they felt "locked" but this am I feel they hurt more because of the pulling on tendons/muscles when I try to straighten my hands/ fingers. So maybe she is right to question my diagnosis once more.
Maybe we should b questions on how it feels when we try to move in the morning rather than simply "how long does the stiffness and pain last for".
I had an allergic reaction to Sulpha too so that's quite possible. But at least this consultant of yours obviously knows her stuff and will be the best person to distinguish between PsA and a reactive arthritis or RA. It's not an easy job for them really but I'm sure that having a well informed patient helps enormously. Good luck with it all. Tilda x
I think the paper work does say possible side effects are a rash, but I didn't realise the raised, hot, burning of my hands and wrists was a rash. I always thought a rash was blotchy - so pleased I took photos and showed them to her.
Maybe we should have example images on literature to help us look for side effect symptoms?
Well my sulpha rash was all over, purple spots and incredibly itchy if that helps. You can google images of PsA hands and RA hands so I guess that's the best way to find out what's going on usually. If there was a gallery of images on here I think there are risks that it might get a bit desperate and over competitive - also a bit too much self diagnosis possibly? But I have sent friends some images of my hands in the past to ask them if they can see swelling or if they look different because it's easy to lose perspective. However if you do this you must make sure that you have taken photos of your hands when they are normal for comparison purposes otherwise they could just look like you're a very over industrious washer woman or gardener?! TTx
The rash u explain is how I thought rashes to b. Mine was not blotchy or purple, only red and hot all over just on top of my hand and underneath in the wrist area. I did show image to my friends and it was my daughter that took it showing both hands as it only affected one. But like u say consultant knows better than us lay people so I best let it lie an wait forclinic apappointment.
Ur probably right about competitive nature and this could just scare us all the more when newly diagnosed.
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