Has anyone taken photographs of the inflamed joints to their consultant/ rhuemy nurse? If so how many?

I have unfortunately been seen by three different consultants over the last six months. First appointment- very little inflammation visible- methotrexate re introduced to my Humira. Second appointment- Visible inflammation- steroid injection given. Third appointment- within 4 weeks of having steroid - no visible inflammation- methotrexate stopped and awaiting a scan. Within minutes of using my hands for gentle every day activities they swell up but they will go down if rested , particularly during the day. I have been taking photographs morning and night and with the exception of one day they all show inflammation.I have an appointment for a scan and to see my nurse in two weeks time. How many photographs should I take in? I have them on my ipad but I am building up quite a collection!!!!!! Do you think I should have them all available for perusal or should I just print off a selection of my greatest hits? Any hints appreciated as even taking the photographs is quite bold for me. Fed up of being passive and in pain, worked out you get nowhere and unless you speak up. Thanks very much as ever for you advice xx

11 Replies

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  • Yes and like you lots, and I are sure I date them! Do it cos when u go its Sod's law your joints will be quiet! Lol . The scan hopefully will show any synovitis too.

  • Thanks Allanah. Dating them is such a good idea. Why is it they quieten down at appointments? I have had an awful week. 3 hours without swelling during my hospital visit on Monday..... bloomin typical. Thanks again for responding. Got to stay assertive and strong! xx

  • I went to see rheumy nurse today and after a huge 5 week flare you can guess i had come out of it and was fairly ok when i went.

    I too am now going to start taking pictures and collect them ready for my next appointment.

    Sods law we never flare when are going to an appointment isnt it.

    Jo

    Xxxx

  • A friend of mine suggested that I photograph them unswollen at same angle as swollen so you can show a contrast? What I did was keep a pain and symptoms journal with photos and maybe print it off over a week and show them - but keep each entry very brief and factual. If you reduce the photos to fit your journal and put dates underneath that works best. But don't overdo it because they do know you have RA so you only have so much to prove really - just keep it simple and choose the best photos only. Tilda x

  • im having 2nd das score today after steroid injection and still taking oral steroids.. rubbish.. but have still been unwell with pain.. but have like yourselves a special plan ! x

  • Maybe take your iPad with you so they can see the full extent, but take some printed pictures that they could keep for your records?

    So much depends on the individual doctor, I find. The first one I had was not interested in any report of symptoms from me, diaries, photos, nothing, even when his own specialst nurse had told me to keep records. Was only interested in bloods and scans. The new one is much more engaged with my experience of my disease, and the specialist nurse I saw for the first time last week has given me a log book and is practically insisting I keep it filled in.

    Good luck.

    Dotty x

  • I had bad flare over xmas with bloods showing eaised inflammatiin so was given the ok to take prednisolone to make them manageable. But when I went for ultrasound the following week there was no synovitis as a result. So being able to show my consultant photos during the flare was really beneficial. She thanked me for having taken the trouble. I kept them on my phone so printing didnt destroy the colours and she could also zoom into the joint. Im now on sulphasalazine as well as mtx as a result.

    Show the clearest ones and let them ddecide if they want to see more would b my advice.

  • I remember i took a photo on my phone of my swollen ankle and when i told them i had a photo he didn't look too impressed and i fumbled about in my bag looking for the phone only to discover i had left it at home but i do think it's a good idea.

  • Thanks for all your advice. Had a wee wobble thinking should I and if so how much? Will look at my collection of photographs before my appointment and select a few good and bad days and keep a note of how I have been feeling. If I store them on my i pad I can easily access more if required. Been playing piano for a good bit at work today and my hands ache but my rings are loose, I know it will just be a matter of time before the swell up again! Thanks again for taking the time to reply as always you all give me such help and stop my brain spinning!! Hope you are all having a pain free evening xx

  • Yes I have a few fat knees and fingers on my iPhone! Perhaps you could make an ipad slideshow !! Seriously, it is a good way of proof. Especially if the swellings fluctuate. Here's hoping for more good piano playing days for you.

    NK. ;-)

  • Thanks NK! If I ever lose my i-pad I would love to see the reaction of the person who finds it. They will think I am a crazy lady, they would be just about right too x

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