Dactylitis in the toe

LignumVitae Member Posts: 1,972
edited 24. Nov 2015, 19:14 in Living with Arthritis archive

I was wondering if anybody could shed any wisdom on my situation. I'll try to be brief.
After a brilliant summer followed by a period of stressful situations I noticed a toe on my right foot was swollen. I ignored and it carried on so I called rhuematology. I was directed to my GP who confirmed a dactylitis (sausage toe) and prescribed a weeks worth of steroids. They worked and it went away.

The stress continued and generally my arthritis was bad so I had a steroid shot. It didn't work and when I informed the hospital they told me that it must be hypermobility if the steroid hadn't helped. I then explained the stress I was under and was told to rest because maybe it was arthritis given what I had been coping with. I did rest as best I could, the flare improved moderately and then...the dactylitis returned with full force - discoloured and very swollen toe that goes hot. I reluctantly called rheumatology to ask if I was OK just going for more steroids. I was told to go for more steroids quickly (which I did) and then asked about what kind of arthritis I had - it has never been fully categorised. It was also suggested that the flare is a flare and not hypermobility related. The consultant is now being chased for ideas.

I'm on day 4 of my 5 days of 30mg of pred and so far it has done very little, as in nothing, to sort my toe out. I'm going to end up on the phone to rheumatology again but it's all beginning to worry me because it seems like nobody really knows what to do which I do understand is not that unusual. I just wondered if anybody else had ever experienced anything like this? the way the steroids seem to be a bit hit and miss seems strange. The idea it is the hypermobility is obviously sort of blown out of the water when the dactylitis is so active, obvious and worsening.

I'm trying to keep my toe warm and not restricted. It doesn't like being soaked and it doesn't like being cold...any other ideas would be welcome.

Im on meth and humira so heftly medicated really.

Thank you



  • stickywicket
    stickywicket Member Posts: 27,219
    edited 30. Nov -1, 00:00

    You know when I start with hugs it's a bad sign. It means that, like you, I haven't a clue. You are one of the most sensible people on here, LV. You do the right thing. You deal with the day to day stuff routinely and you ask the right people (GP or rheumatology) with the not-at-all routine stuff. You've already done that and the fact that you now turn to us is, I can see, a measure of your desperation.

    I can understand your desperation. This all started before I went to L.A. Over a month ago. You have been coping with that, and the little ones, all that time. The fact that the steroids worked first time and not second is just one of the cruel absurdities of arthritis.

    I'm sorry, I can't help. I so wish I could. You are doing all the right things. Just trust your judgement. I can only send more (((())))s.
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Oh!! LV I am so sorry I a afraid I cant help either, lets hope someone will come up with some answers soon sending some more of these to keep you going ((((())))) xx
  • mig
    mig Member Posts: 7,152
    edited 30. Nov -1, 00:00
    Im sorry too LV wish i could help can only do as Sticky did and send hugs,(((()))) Mig
  • TrishaW
    TrishaW Member Posts: 109
    edited 30. Nov -1, 00:00
    Hi LV,
    I've had this in my toe and also in my fingers on and off over the years. My diagnosis was originally RA but was then changed to undifferentiated spondyloarthropathy. you also get dactylitis with psoriasis arthritis (and confusingly you can have this without obvious skin symptoms)
    In my case oral steroids didn't help, but IM Depo Modrone (streroid) did help..my fingers 'deflated' and the redness faded, movement improved and pain reduced fairly dramatically. I still have IM Depo when I need it, usually 2-3 times a year. Interestingly my toes have now been ok for ages and my hands are generally much better. They definately flare more inresponse to illness (eg if i have a bad cold) and to stress.
    I'm not sure if you've tried Depo?
    In the meantime I bought some padded toe protectors from the chemist to wear over my tender toes and stop them getting bashed if i was in slippers/barefoot.
    Hope you get some relief,
    Anyway, good luck
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Thank you all so much for your kind responses. It's still an unhappy toe and that is after my steroids have finished.

    I did wonder about a toe protector because small children and dogs are no respectors of sore toes so it does get some uncalled for abuse from all quarters and if I am not looking where i am going that is inevitably the toe I stub of a stray toy. I might try that though Trisha and thank you for making me feel like I'm not the only dactylitis toed arthritic - I'm in the same undifferentiated camp as you.

    I had a panic in the middle of the night that I was making a fuss over nothing and in fact it wasn't a dactylitis but was a misdiagnosed chillblain but surely two GPs would have noticed that and surely it wouldn't just be fat, painful and a bit red but would be more obviously a chillblain...I can't decide whether that is a possibility or if my usual self doubting demon is just perched upon my shoulder as it likes to when arthritis is busy with the rest of me. I do have two pairs of socks and a shoe on it though and have fastidiously kept it warm but not too hot and not too cold which I thought was the treatment for a chillblain. I'd have thought more toes might have joined in if it was as simple as a chillblain too.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh dear, LV, I don't know what to say. This seems to be one of the recurrent troubles of our kinds of arthritis, does that cause it or could it happen anyway? Does one have to have arthritis before dactylitis appears or not? I truly dunno. :(

    You are not making a fuss over nothing and as usual you are being sensible in your approach. Steroids are hit-and-miss but I thought that was more the injections rather than the tablets. 30mg is a pretty hefty dose so if that isn't helping then it's even tougher for you. Would an anti-inflammatory of some sort help? As you know I am not a doc but any port in a storm says I. DD
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Oh LV, I am sorry the steroids didn't work. I have no explanation why but it has happened to me too. In fact, every time I take them it's a different experience. Sometimes blissfully stiffness and pain relieving, other times (especially lately) I have the ugly side-effects and no positive effects on the arthritis. I don't know why this would be but my personal, and possibly wacky, theory is that the immune system is so full of redundancies and complex, maybe sometimes the effect of steroids is just overwhelmed by it's efforts at making inflammation? I'm on my own steroid prescription right at the moment and waiting for some effect, other than a messy, emotional one.

    ((((())))) I feel your disappointment. Possibly the injected version would be better for you?

  • TrishaW
    TrishaW Member Posts: 109
    edited 30. Nov -1, 00:00
    Hi LV
    A chilblain would feel more itchy/red on one part of the toe (eg down one side), not the whole toe swelling up , red and painful.
    Chilblains are itchy dactylitis isn't -dactylitis feels like your toe/finger has been slammed in a car door!
    It's nice to know i'm not the only undifferentiated person on here :)
    Trisha x
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Trisha - that clears that up nicely then, it's definitely not a chilblain! It's throbbing away now with that pure pain that only arthritis can achieve!

    Oh well, it's lucky it's just a toe but it does worry me that steroids aren't effective. I'm wondering if you have it spot on Anna and the steroid is just doing other things right now. Ive had oral steroid and injections but maybe st the moment my body is just lapping them all up. Ho hum.

    Thank you all for your kind words and advice. At least I'm not as worried about it now and I know I'm not alone!
  • TrishaW
    TrishaW Member Posts: 109
    edited 30. Nov -1, 00:00
    I find sometimes Depo injections have a dramatic effect, other times they don't do much...it's quite random!
    Ice packs help me temporarily when my toes/fingers throb like this.
    Also I notice a definate link with a 'flare' in a digit and being really stressed or having an infection (such as a bad cold)

    I hope you get some relief soon