Rheumatoid nodules. Please help!

I would welcome advice from anyone who experiences this problem. Mine have become ever more pronounced over the last 3 months, or so. My GP has been non-commital, as she, "doesn't have sufficient experience", and to ask my consultant, who doesn't really have the time. Whilst I appreciate that this is a cosmetic issue, this is REALLY getting me down about my RA, as I thought I could come to terms with everything it was going to give me. When I spoke about it with my GP - only today, I hasten to add - and mentioned multiple internet sites that I look at, and that I didn't want to exaggerate/ self-diagnose, she suggested that I would, "know my own condition best", and even went so far to suggest that sites may hold a wealth of information. What is affecting me now is developing nodules on my fingers: middle & ring finger of my right hand, right elbow nodules for the last 6 months. All nodules are on the right hand side of my body. I have taken a couple of pictures of these, mainly for the purpose of seeing my Consultant (by Sod's Law, everyone looks & feels great when they go for a review), but will upload them if anyone can give me any advice. That'll be a treat: everyonelookatmyelbow.com

15 Replies

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  • Hi Andrea, I've had nodules on my fingers for many years and I agree they are very unsightly, and painful if knocked. At my last consultation my consultant said that there was not much to be done with nodules on my fingers.They can wash out the joint and even use a radioactive treatment to help them go down, didn't much like the sound of this though. In the end he suggested to leave them as the risks far outway the actual procedure, more chance of infections in small joints like knuckles. Mine never go down infact they just get bigger with each flare, the ones i had on my wrists and elbow were corrected when I had surgery on them, the surgery wasn't just for the nodules it was for other joint corrective surgery, and a replacement elbow.

    I'm sorry you have them as they are unsightly but I'm afraid there's not a lot to be done, unless like you say you really want surgery for cosmetic reasons.

    For me personally we have enough to put up with, the way we look,walk etc is all part of the condition even though it's took me many years to accept this I'm sure you will too.

    take care

    Mandy xx

  • Thanks, Mandy. This was an aspect of RA that I didn't anticipate, as I understand it doesn't happen with everyone. Everytime I see Consultant & GP, there's been a huge sigh at managing my disease: I find it leading that my GP has effectively said that I'd get better advice on the internet than what she could give re:rheumatology. I'm listening to what you're saying about gait, walking etc, other people's attitudes. I originally thought that I accepted it straight away, but I really don't, if I'm honest! I felt it tonight when I took off at my husband.

  • Can I ask how these Nodules start? Ive noticed the skin btween my index and middle finger getting swollen and puffy in a kind of soft swelling _ is that how they start? have wondered how they begin? xx

  • Hi Fi, the skin between the fingers your talking about is a normal swelling from the fingers when the joint's are in flare, they will go down. However nodules don't, mine are like pea size lumps on my fingers, mainly index/middle fingers. They are fluid filled and squashy to the feel and horrible to look at too, If I put my hand flat on a table the middle finger doesn't lie flat it just sticks up and is very painful if I knock it in any way. They generally come after years of aggressive RA.

    Hope your ok.

    Mandy xx

  • Oh thats good .... Do you wake up one day with a pea ? I know it sounds silly but I cant imagine how you first notice them?

    Im still ok on Rituximab next infusion on 23rd. Will you be on holiday then. Just thinking it would be nice to message you?

    Hope u r ok too

    Love Fi

    xx

  • Go on holiday 12th July, good luck for next infusion please message me to let me know how it went.

    The nodules just gradually "grow" that's probably the only way of describing them. Starts off with swollen fluid filled knuckles that don't go down and gradually form a nodule! Not very nice.

    I'm doing ok thanks.

    Take care

    Mandy xx

  • Without giving holiday advice, I'd say that that nodules surround a joint, commonly pea sized & very hard. Sometimes very small pea-size. Really nice to know that people exchange holiday horrors!

  • Hi Andrea

    Sometimes nodules will just disappear of their own accord, especially if things are well controlled and they haven't spent years settling in to their new life on your hands etc. ! However once they harden it is less likely. My middle finger, right hand, is a mess too but the nodule (which I've had for donkeys years) will go down with a steroid injection ... comes back though when it wears off!

    Specific surgery to remove nodules tends not to work too well ... the blighters have a habit of moving back in!

    Sorry they are getting to you and hope your consultant will perhaps be able to suggest something.

    Lyn x

  • Thank you so much, Lyn. It has set my mind a little at rest that they can be controlled to a certain degree. Although I'd never mention folk by name, I've cited your experiences when I've seen my GP! She effectively conceded that there are folk out there with long term effects of the disease, who could offer far & away better advice than she can give me as a GP: I believe her to be completely genuine in this. What I didn't have time to discuss is how devastated & dismayed at how aggressive my RA is becoming. Although I'm upset about cosmetic changes, I'm significantly more upset about hand function and, "what if?" factor. Changes are occurring on a weekly basis, and now I'm finding myself with limited options, as I'm unable to determine how I'm going to feel when I wake up. Even 3 months ago, I used to have an idea of how I would be on any following day. My RA is frightening me now. I would dearly welcome any advice.

  • Hope this link helps.

    webmd.com/rheumatoid-arthri...

    Paula

  • Paula this is a brilliant site.. thanks

    Julie xx

  • Hi Andrea, just to let you know I did have nodules on two of my fingers only on my right side too and I was told to use coban wraps on my fingers to reduce some off the swelling on my fingers also eased the throbing loads.

    and mine disapeared when my swellings went down, however they went right down and I had little sharp lumps around my finger joints only minute but very painfull stabbing pain. When I seen rheumy about them he said it was little bone spurs were bone had been damaged and broken away around the joint.

    However they have gone now, just lasted a few months.

    Hope yours go too I know how unsightly they can be and how paranoid I felt, however Ive seen a few people with them and I never think they look a problem on others I think its just a personal look problem.

    Take care

    Julie x

  • You're welcome Julie 55. I saved the link in my favourites when I did some research when it was mentioned on the NRAS forum.

    I did the quiz on the right hand side of the page and the answer was that my RA is not at the moment under control............and don't I know it!!!!!

    Paula x

  • had found this site myself too it said I HAD only acheived moderate control? when I took quiz?

  • Mine said that I had reasonably good control, and among the suggestions it was that I should avoid stress. This is good advice for us all. But life goes on doesnt it. A close relative has been going through a very worrying divorce, threats of child abduction and things like that, and I've not found that easy at all. I'm sure it affects my sleep patterns, which has a knock on effect.

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