When to go back for repeat bloods

Fieldmouse73
Fieldmouse73 Member Posts: 6
I started with joint pain in my hands symmetrically in January with some occasional swelling and puffy skin between the same knuckles on both hands. In February I went to the doc and bloods for RA came back negative. However due to swelling and family history I was referred to specialist and saw him beginning of March. However his extra bloods came back negative, my hands weren't swollen that day and X-rays showed little or no concerns. He explained I may have had a bowel infection which could be causing my joint pain and I may have the beginnings of RA and I was to continue managing my pain with anti-immflamitories and paracetamol. And if anything changed i was to go back to the docs. He also said my family has a very active gene that's associated with RA.
Now in April im still suffering every day up until lunchtime with varying degrees of swelling and joint pain. I am also suffering in the evenings and sometimes during the night. My ankles have been swollen daily for a month and the balls of my feet are swelling too. I also have pain in my ankles and outside toes.
My question is when do I go back to the GP again for more bloods and an X-ray of my feet and ankles? I will feel a fool for making a fuss if the bloods are negative again and my hands aren't significantly swollen on the day I go. But I am worried about needing The disease modifying drugs as quickly as possible too if I am developing RA.

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Fieldmouse73

    Welcome to the Arthritis Care forums.

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes
    Mod B
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hello Fieldmouse
    I'm not one of the helpline team - they'll reply soon with relevant advice - but in the meantime I'll pass on a suggestion that frequently comes up on the Living with Arthritis board, which is to take pictures of your swollen joints, and also keep a diary of what is happening. You'll then have something to show even if your joints are 'OK' on the day of an appointment, and the diary helps to jog the memory and/or might show a pattern to the problems. I hope you manage to get some answers and help - I can understand your concern to ensure that if medication is needed it starts sooner rather than later.
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    Hello and welcome from me, too. That's a very good suggestion from daffy though, like her, I'm just an ordinary forum member not part of the Helpline team.

    From what you have said it sounds as if your rheumatologist did think there's a good chamce that you have an autoimmune form of arthritis even though nothing showed up originally. Some forms are sero-negative so harder to diagnose. You are right that it's best to get on the disease modifying meds quickly. I understand the fear of going too quickly but I suggest it's certainly not too early to talk it over with your GP. You might also find it useful to look up some of Arthritis Care's publications (above) on the different types of inflammatory arthritis. R.A. is just one I hope all goes well and well done on being so clued up amd proactive.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • helpline_team
    helpline_team Posts: 2,326
    edited 30. Nov -1, 00:00
    Dear Fieldmouse,

    Thank you for your enquiry to Helplines. Sorry for the delay in replying but our lines are closed on the last Friday of the month for team training. I'm happy to see that other forum members have been supporting you (thank you!) If you are in a diagnosis limbo period it's sometimes really difficult to know what might be helpful. So if you felt like talking about things, do know that you'd be most welcome to ring us for a chat about things.

    I'd imagine you are still under the rheumatologist, so you may well be able to ring the rheumatology specialist nurse if you have more swollen joints. Sometimes it helps them to see you when things are 'active'.

    You can sometimes discuss whether it's worth them doing a different kind of scan of affected joints - to see if they can see signs of active inflammation. There are some kinds of inflammatory arthritis that may not show up so well in even sensitive blood tests, so you may want to keep the rheumatology team in the picture if you are having more functional problems with your joints.

    I do appreciate that you don't want to delay any possible treatment, so keeping the information coming to rheumatology is often a good idea.

    Do come back to us for a chat if that would be useful.

    Kind regards

    Guy
  • Fieldmouse73
    Fieldmouse73 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thank you for your replies, it certainly helps talking especially when you're in a transition stage and waiting!
    I have started keeping a diary which is making me think more about my pain and swelling.
    I think I will then go back and see my GP as he can redo bloods and add to my notes. We have a general surgeon who specialises in RA here in Shetland, so not a specialist. Not sure if this is better or worse, but it does mean I get to see a consultant more quickly.
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello Fieldmouse73, I like your user name! I too am an ordinary forum member but have an auto-immune arthritis which is termed 'sero-negative', i.e. I do not test positive for rheumatoid factor. There are many kinds of auto-immune inflammatory arthritis but the meds that are used remain the same.

    I think it is worth keeping a diary of foodstuffs, activity, pain and tiredness levels plus measures of the inflammation so that when you see your GP again he will have a fuller picture of what is going on with you. I am not a doc, just a practising arthritic, but I have been practising for eighteen years. :wink: I was initially 'diagnosed' with the label of unspecified auto-immune inflammatory arthritis but that was changed to psoriatic arthritis when other events occurred. The meds remained the same.

    I wish you well and I hope you get some answers sooner rather than later. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben