RA With Mostly Swelling Plus Some Pain

Hi everyone

Bit of an intro as I recently signed up here and have been reading with interest to see if there's anyone like me! 😀

I was diagnosed with RA mid-2018 (seronegative) after a couple of years ignoring the signs. At first I was experiencing wrist pain which I put down to RSI, due to me working with computers for about 100 years. A bit later I started to get stiffness in some fingers which then led to swelling of the entire affected fingers.

My fingers have always been rail thin, but ...

My right hand little finger inflated to about 1.5x its normal size

My left hand middle finger did the same

Then over time my wrists got worse as swelling started to appear in both, with some mild pain. The fingers only really hurt when I use them, or try to bend them beyond what they want to due to the swelling.

My left knee became swollen and looks like it's pregnant. Touch wood so far the right is okay.

Within the last two months my RH first finger has inflated to 1.5x its normal size which is a bit of a nuisance, as I use it much more than my little finger. This morning I'm getting the tell-tale pain in the PIP joint of my left hand first finger, so no doubt that too will inflate soon (hasn't yet).

I've also developed a bulge on the back of each foot where the achilles tendon meets the heel bone, which is often red and painful to the touch (kind of like Bursitis). This is also accompanied by swelling into the foot and the very bottom of the leg (although this is minor and I wouldn't notice if I wasn't obsessing over the foot problem). The swelling goes down overnight. My GP thinks this is a side-effect of my RA and says it is quite common.


I've been on Hydroxychloroquine for a couple of years (200mg/day) but I don't think it's done anything, unless it's stopped things getting even worse...

I'm now waiting for hand Ultrasound scans before they put me back on MTX which will hopefully get rid of all this swelling. I went on it in 2019 but sadly quit after 5 weeks (I was fine on it BUT I couldn't stay off the booze - DOH!). Still waiting for the US appointment (getting the "due to COVID" excuses), although to be honest a hospital is the last place I want to visit right now, especially after being in self imposed lock-down since early March 2020 even before the government did it. I will also need baseline bloods.


Anyway that's the waffle, and now you know where my username came from 😂

Best wishes folks

Comments

  • Ellen
    Ellen Moderator Posts: 1,591

    Hi @SausageFingers

    Lovely introduction and explanation of your username🙂

    I'm not going to interfere with you talking to our members, but just thought you might like a quick look at this information on Methotrexatehttps://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/specifically the section about alcohol as you are thinking about restarting it.

    Best wishes

    Ellen

  • I'm getting sick of it now.

    Fingers keep swelling up. It's put an end to my guitar playing (my only hobby). WTF is it with swollen fingers? I don't see anyone else with this.

    Having an angry with this thing moment. Sorry.

  • lindalegs
    lindalegs Member Posts: 5,393
    edited 23. Jan 2021, 16:18

    @SausageFingers

    Hi Sausagefingers and thank you for introducing yourself. I'm a seasoned rheumatoid having had it for 35 years. My finger joints used to swell at first but it did settle down after a time. Unfortunately my hands are deformed but that's because the medicine when I was 27 is very different to what you're prescribed nowadays. My rheumatoid is also very aggressive and my whole body was badly affected in the initial flare.

    In the days when I took methotrexate I was told not to have alcohol one day before the dose taken and two days after, otherwise I could have a drink as normal so long as it's within the governmental limits suggested.

    Hope this helps.

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Government limits haha. I'd struggle to keep below 14 units an hour 😂

  • lindalegs
    lindalegs Member Posts: 5,393

    @SausageFingers

    In that case you may not have as wide range of meds to be treated with as others do. I will say you are usually monitored with blood tests to see if your liver is being adversely affected whilst on Dmards ...though from what you say yours might be a bit pickled to start with!


    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • 😁 Thanks, Legs :) I did have lots of tests when on MTX. I was fine. I think I have a sports liver haha Top of the range.

  • lindalegs
    lindalegs Member Posts: 5,393

    @SausageFingers

    Good for you! Long may it stay that way and I do hope your fingers settle down and trouble you less. I've had 5 operations on my left hand and the best ever gave me the use of my thumb back! This means I can now knit again after 33 years of not being able to! My wardrobe is now bulging with sweaters in fact I have to start doing one for Mr Legs as I have too many!

    Well it's the weekend when we allow ourselves wine, yippee! Alcohol doesn't mask the pain but it makes me not care about it! Cheers!


    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Right hand first finger feels like it's going to burst. Can't bend it beyond about half way.

    (Left hand first finger for comparison)

    So sick of this now. I feel like sticking a pin in it and squeezing out all whatever's in there!



  • lindalegs
    lindalegs Member Posts: 5,393

    @SausageFingers

    Oh dear, yes I can see it's swollen. Have you tried an ice pack or moving it about in hot water. All I can advise is try to move it as much as it will go and do it regularly plus sticking a pin in is not a good idea as yo won't achieve anything! It isn't like a blister as it's your tissue which is inflammed and puncturing it might introduce infection! ( I do suspect you're joking though.)

    You do have my empathy as we all get fed up with this disease as it's very frustrating!

    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • Last night I could almost do a full bend of my new fat finger!

    The reason? No food at all.

    Over the years I've been trying to figure out which foods make this thing worse but not been able to narrow it down to one particular group.

    I have a feeling it's 'carby' stuff, but still not 100% sure...

    But no food at all and I feel so much better. Obviously that's not going to work long term haha


  • God that finger is bad today. Feels like it's going to burst!

    Anyway, I've had my Ultrasound appointment through FINALLY (hands/wrists) which they want to do before getting me back on the MTX. So next Monday is the US. Then another 5-7 days for results of that, then a blood test and then maybe MTX and... back on the road to no sausage fingers? We shall see.

  • Jewels
    Jewels Member Posts: 202

    Good luck hun

  • Does anyone else here suffer finger swellings? Not just DIP/PIP joints, just overall swelling along the entire length of the finger?

    I've been pumping Ibuprofen for the last 24 hours and have got some relief. Result is still swollen but don't hurt to bend (oddly)

    This stupid problem, whatever it is (if it even IS RA) has ruined my guitar playing hobby.

  • Tom
    Tom Member Posts: 522

    If my experience is anything to go bye, it will pass. My fingers looked like yours a year ago, but now I can form a proper fist (but not punch anybody!) My RA is treated with hydoxychloroquine and sulfasalazine. I've not had to take painkillers for some time.

    Tom

  • SausageFingers
    SausageFingers Member Posts: 34
    edited 4. Mar 2021, 10:47

    Thanks, Tom.

    I may ask if I can try Sulfa first instead of MTX. At least I won't have to keep going back to the hospital for tests with that one. I'll have a think and read some of the Sulfa leaflets they gave to me ages ago. I have Hydroxy already but on its own - pointless. Has absolutely no affect on me. May as well be eating Smarties 🤣

    *EDIT - oh scrub that. Just read you need tests with that too!

  • I just saw in the 'news' (term used loosely) that Prince Charles has sausage fingers just like me.

    I'm basically royalty :D

    https://www.mirror.co.uk/news/uk-news/nhs-advice-anyone-prince-charles-24208130

  • AndyT
    AndyT Member Posts: 47

    Hi @SausageFingers , did you manage to get your finger swelling down, and get back to guitar playing?

    another guitar player here, have had the odd finger swelling on and off for two years but now I’ve got it in every finger for the last 6 weeks.

  • Hi @SausageFingers my fingers on both hands swell. They become so tight due to the swelling that I can’t make a fist. However they increased my Sulfasalazine to 6 tablets daily and I had a steroid injection mid January and the swelling has gone right down. Tightness in Achilles heel has gone but pain in foot arch has returned. Plus side is my fatigue has decreased and I’m feeling more human again.

    Take care


  • Hi Andy, funnily enough that particular finger has returned to pretty much normal now. Thanks for asking. Absolutely no idea why. My right hand little finger never recovered like that one did. So strange.

  • AndyT
    AndyT Member Posts: 47

    Good news, how's the guitar playing?

    Did you get any results from your ultrasound scan? I'm still undiagnosed but have another US scan coming up soon.


  • I can mostly play again due to that first finger returning to normal for no apparent reason :) Little finger is still a bit troublesome - that's the one being a stubborn little **** for quite a few years! It's the only swelling that hasn't just gone down on its own.

    Any US scan I've had revealed absolutely nothing. The result letters just said what I'm NOT suffering from. Quality haha


  • Nfk_gal0617
    Nfk_gal0617 Member Posts: 39

    HI Sausage Fingers, A year on and wondering how things are.?

    I'm new here and picked up on your thread (and humour) as I currently (March 23) have middle middle finger L Hand and left thumb swollen, very little movement. All started with me in Summer 2017 in my feet, big toe, red hot inflamed. Tested for gout several times, inflamortory markers, nothing. Hence G.P. put this down to osteo arthritis after an xray. Very fed up as foot like a blank, stopped me walking, comfort eat, gained 2 stone.

    Feet calmed down after a while but turned up in my wrists - now I know why my ninety six year old aunt did not have zips, buttons, shoe laces or a bra! This moved around, how could it possible be Osteo Arthritis.

    Long story short, Anteior uveitis 10 months later, dived into Versus Arthritis and other research and ended up asking GP to test for HLA B27 - Hey presso positive. I felt so much better having a handle on this. Thanks for your post, hope you are still able to enjoy music and a beer or two.