Fingers changing, should I be worried?

Good morning, I have phoned my specialist nurse today and left a message asking for a call back. I'm on mtx 15mg a week and feel loads better than I did before I was on treatment. The thing is that my wrists and fingers are still sore and getting gradually more so. Also I have swan neck deformity on my right ring finger and now my index fingers are curling downwards at the ends as if the tendons have shortened. Just to top the whole thing off my right hand looks like it's widening at the joint below the little finger. It looks as if it's been squashed and pushed out..is this ulnar deviation? I just wondered if this is to be expected with ra as normal or would you speak to your team and consider increasing meds? Nobody has discussed expectations and although I'm not in great pain as I used to be I think I'm accepting gradual deformity. I can cope with pain and as I'm not currently working I don't have to push myself. That said when I do housework or drive I'm in pain and feel very tired. Your advice would be much appreciated :-)

14 Replies

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  • It's good that you're trying to contact your rheumy team, as I think that you should be nagging them about this. I've just answered Feather's question below about my first few months, which has resulted in me getting some permanent damage. So looking back I do regret that I wasn't pushier about getting diagnosed in the first place and then about getting the meds adjusted until they actually started to control this. It took having Hydroxy and then Sulpha added on to the MTX before things really calmed down for me, and I did have to jump up and down a bit but wasn't really very pushy so probably took well over a year. In hindsight I should have complained more.

    I think the docs are so busy that they assume things are ok unless you tell them they're not. And you shouldn't be putting up with the amount of changes you describe until you've exhausted all the treatment options. it may be that your RA is quite erosive and will cause you some deformity no matter what drugs you are on, but if you're only on MTX at the moment I think you should be asked for a review of your treatment to see if it can be controlled further. So keep leaving messages... Pollyx

  • Thanks Polly, I'm thinking the same as you but my rheumy team don't seem to agree. I've had a call back and was advised that I could see the OT about possible splinting as the nurse thinks the changes are due to damage which occured before I was on mtx. When I said I was thinking my meds were not enough she said that as my esr has dropped to 16...it was in the 50's before..then the meds are working well and my ra is controlled. She asked if I had swelling but I said not as my ra doesn't present with swelling. I just hope she is right as I really don't want to end up with unnecessary deformity. I may go and see my GP but going on past experience they won't want to get involved. I know that I was positive rheumatoid factor and anti ccp and this can indicate a more aggressive disease but I don't really know what else to do. Thanks for your advice.

    Paula x

  • I would keep pushing, an ESR of 16 is still possibly high (it depends, some people have naturally higher figures than others). And if you're still getting increasing pain, then to me that's a sign also. Think a bit of artistic licence might be called for, rather than stuff upper lip. if you feel bad then tell them, and don't be all stoic about it. When's your next blood test? If not too far away, and if it hasn't dropped further then push more... You are also entitled to a second opinion, but may want to keep that in reserve for the moment. polly

  • helix i thought esr sediment rate normal 0-20 in that range is described as normal mine was 20 3 months ago dont know what it is now as cant get another test or out of my doc.

    to me looking on net 16 is brilliant for her age i would say cos womens are slightly higer than mens for some reason

    probably because of man flue LOL and why we cant multi task.

  • I'd think that physio or OT could both be useful to help stop physical deformity progressing, though obviously you still need to be working with the rheumatologist to stop the disease process as well.

  • Seems to me that while you have been doing very well, you are on a very low dose of MTX & it is therefore all the more important to have a review of your treatment when things are not going so well.

    Outside of the world of inflammatory arthritis people get really worked up about deformity & damage to bones - perhaps we tend to be a little too patient & accepting. Something's changed and as you've been doing so well your Rheumy team should be motivated to get you back on track & for that to happen you need to be examined & listened to. I think you should push for an appointment with your Rheumy.

    I'm almost phobic about asking my GP practice for anything but they have been a bit more helpful lately, maybe yours will be too? Worth trying, perhaps.

    Good luck,

    Christina x

  • I agree Christina, it's a bit worrying when you report changes but nobody actually looks at them. I'm going to see my GP next week.

    Paula x

  • Hi Paula,

    sorry to hear you're having problems with your hands. Both my hands are wider at the point below the base of the fingers. I don't think it's apparent to anyone else but I thought they looked a bit spade shaped and I realised they definitely had changed when I tried to put on some bangles last week and couldn't get them anywhere near over my hands. Felt a bit depressed as they are lovely gold bangles. Oh well, guess it's good news for my daughter!!

    How are you getting on with the hair loss? I'd been having huge clumps fall out every time I washed my hair and when nurse asked me to increase MTX from 10 to 15 I panicked most of all about the hair side of things, but actually over the last couple of weeks, I've noticed I've been losing much less. Maybe it's something that reduces as we get used to the MTX. Can only hope?!

    Hope you're feeling OK today.

    Caroline x

  • Hi Caroline, sorry for the delay in getting back but I've not really had the energy over the past few days to write on here. I don't know if it's the ra or if I'm coming down with something? My hair is definitely thinner than before mtx but I started thinking that before I had ra I was working and washing/blowing my hair every day so maybe I notice more coming out in the shower now because I only wash it once or twice a week. I thought I'd see how it gets on anyway and hopefully like yours it will settle down. I know what you're saying about the bangles, I have the same problem as you.

    Paula x

  • I am also having problems with my right hand. I also have swan neck deformity on my right index finger and have to wear a splint to stop it over extending. My ring finger the joint has failed and split so the finger is really distored. My hand has been x rayed as I was concernd that I was loosing the grip function my fingers feel like the tendons has shortened and it is getting harder to grip things. I will have to go back to the GP to see what they can do.

    On a brighter note my MTX has been reduced from 15mg to 7.5mg a week as my ESR has slowly come down to 7. The extra energy and vitality that I have is worth all the sickness that I had when I first started on the MTX. Stick with it the reduction in pain is welll worth what you have to go through to get to this point/

    Ian

  • Great news that your mtx has been reduced so much. I agree that the drug has been marvellous as the pain I was in before treatment was unbearable. I look forward to experiencing some of this extra energy and vitality you talk of

    Paula x

  • Hi Paula - sorry coming late to this one. My fingers have changed too but no one else but me (and OH and friends if I really make a point of showing them) notice. 2 of my knuckles are always a little swollen - especially in the mornings and my fingers will never fully clench.

    I did try and tell my rheumy on the telemedicine link in June about my little fingers sticking out and the feeling I've had of my fingers spreading out and space between knuckle joints widening. But the physio undermined me by saying her's do this too in a dismissive way. He said he would arrange an x-ray for my hands to see if they've changed in the past 2 years but this has never happened.

    Basically my pinky on my right hand has spread out and away from the rest of my hand and has turned outwards too so the finger nail faces away from my hand sideways. If I hold my right hand straight it's wonky and the fingers all lie in a wonky way but none have any swan neck deformities yet so my GP was a bit dismissive. These changes came about last year and earlier this year after terrible pain in the ulnar joints in my wrists. It was very fast - I literally woke up one morning after extreme pain the night before and my little finger had turned round and was sticking out and it's never come back in.

    I also have lots of bony swellings on the tops of my fingers now which arrived after the RA had started very fast indeed - one day the top of the finger or the middle joint would be intensely painful and by evening one of these hard bony swellings had arrived and they have stayed despite pain going away. This is OA but I believe it's secondary and it certainly felt very aggressive and rapid in the way it arrived.

    Friends often show me their wonky hands if the subject of arthritis arises and these make mine seem quite normal- but on the other hand I can now identify theirs as clearly due to OA whereas mine is different and my physio thinks it is early ulnar deviation. I don't generally get any pain anywhere anymore but then I am on 15mg injectable MTX which is said to be like 17.5 or oral MTX and also take Hydroxy. When I was still getting aching hands and wrists and ankles I did go to the GP and he passed on messages to my consultant. My ESR has never yet come in below 30 but I think that's my normal - as Minka says it's higher for women and as we get older too so if it's come down dramatically that means something - but it doesn't mean everything by any means. As you will know from many on this site ESR can be low and disease still active - not sure about the other way round though.

    I think it's good that you have contacted your rheumy and you probably need to have your dose of MTX raised or even better, a new dmard such as Hydroxy introduced as they say that combination of therapies is the best treatment for early RA and it's certainly worked well for me. Tilda xxx

  • Hi Tilda and thanks for your message. I'm sorry to hear about the OA affecting your fingers, my Mum has OA and her fingers are all wonky and look very painful. I think you're right about the combination therapy but with the nurse saying she was happy with my treatment I'm a bit stuck now until I go back to clinic in the new year. I will bring it up with my GP in the meantime but I don't hold out much hope after the fight I had to even get diagnosed. It sounds like you're treatment is working very well as I can honestly say I've never been pain free. Hopefully your ESR will start to fall eventually. I keep drinking a little apple cider vinegar each day in with squash and convincing myself it's helping with the inflammation lol. I'm off to read your blog now to find out all about your holiday. I get short bursts of energy where I can concentrate so I'll strike while the iron is hot :-)

  • Hi, haven't been on here for a while so have only just seen your post.

    Replacement knuckle joints of the fingers could help the deviation of your fingers. I believe that they can also replace the other joints of the fingers as well which may help with the any other deformities. I had 4 replacement knuckles back in early 2002 or 3 which stopped the pain and also improved my grip and definitely improved the appearance. Perhaps you could have a chat with your rheumy consultant to see if it would help you. It was only done for me after I emphasised the fact that doing personal things (i.e holding loo paper - sorry to be so base) was difficult plus the pain, He wouldn't consider it on the grounds of what the hands looked like.

    And it definitely helped and after so many years, they are fortunately still working and I only get mild pain occasionally. Maybe something to think about.

    Judi xxxx

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