RA nodule -advice please

[Dobcross1]

I have what I think is an RA nodule on the underside of my big toe (large soft lump!). It doesn't hurt to walk on at the moment but if I walk for any length of time it does. I'm not sure if I should just leave it alone or do something about it, as I've been lucky enough not to have had this before. Do these lumps go on their own/is there anything i can do myself to get rid of it? Or should I contact the Rheumatology Nurse? Any advice gratefully received!

[Oscardoggy]

Hi Dobcross 1, I have had several nodules in different places, mostly on my hands and fingertips. I reported them to my rheumy team but unless they cause specific problems they leave them alone. They do disappear spontaneously eventually. xx

[Dobcross1 in reply to Oscardoggy]

Thank you! That's good to hear!

[Kags1068]

Hi Dobcross

Sorry you're having to deal with a nuisance nodule!! They can be a real pain.🙄

Unfortunately, I've had (and still have) countless ones over the years too. I have many across both hands, on both feet, one on elbow and a new one that appeared a couple of weeks ago that appears to be on my tendon(?) near my elbow. Some are hard and bony and if you knock them, excruciating for about 10 seconds, and some like my newest addition are pea-sized hard lumps that move around when touched.

As Oscardoggy says, mostly they are left alone. Many years ago I had some on my hands injected with steroid. It was extremely painful, but 2 or 3 did get a bit smaller. They did just appear elsewhere though. They don't seem to suggest injecting now. Also, at one point when I had several across both feet, as they were causing problems, they were surgically removed. I think this is a bit of a last resort though. It did help, but over time a couple more grew in other places and one of the bigger one's returned. As they were manageable, they've been left alone. They can seem to appear overnight - especially the squidgy moveable one's. Likewise, they can disappear just as quickly too.! I've had a couple on my fingers where the skin broke down, and a dermatologist gave me some dressings to put on while they healed - which they did. So watch out for any breakdown in skin.

Basically, over the years I've come to realise that they're a law unto themselves, and they're doesn't seem to be too much you can do. You might notice an increase or worsening in them if your RA is less controlled, but then again, you might not! I don't know if you're on a biologic, but mine did improve when I started one. They didn't disappear, but some got smaller, particularly the one on my elbow joint which had started to look like a second elbow!! The improvement in that was amazing. I've never personally come across anything that helps them, but obviously that doesn't mean someone else hasn't!!

Sorry if this is a bit waffly. I hope it's not unhelpful! If it's worrying you, by all means contact rheumatology to clarify that it is a nodule. Hope you get lucky with it, and it disappears quickly from whence it came!!😉😄

Best wishes xx

[Dobcross1]

Thanks Kags, ive been lucky so far but since i tried to drop my MXT from 25mg to 22.5mg in Jan, then went back to 25mg in March things havent been as good and i guess the nodule is part of that.

Just hoping it decides to bugger off on its own...

[Kags1068 in reply to Dobcross1]

Yes, I'd say if things haven't been so good, then that's a prime time for one of the little buggers to show up.

Ironically, as well as growing nodules anyway, i also fell into the group who grow more the higher the dose of MTX! As such, it generally has to be kept at a low dose for me as it basically acts like fertiliser!😁

I'm hoping that as you've already been on a high dose of MTX, that you won't be prone to this too. Something to be aware of just in case you suddenly sprouted several at once. Hopefully not.🤞🤞

I hope you get back on track with the MTX very soon and start to feel better. I'd say there's a very good chance that over time it may well disappear- or at least have the decency to decrease in size!😉

As i said, just be mindful of any changes, increased pain or skin breaking down. Also, for ease of mind, do mention/show it to rheumatology at some point to clarify that it's definitely a nodule. Best wishes X

[Dobcross1 in reply to Kags1068]

Thanks Kags, really appreciate your help 😁

[Kags1068 in reply to Dobcross1]

you are very welcome xx

[Tisboo]

I’ve had 3 operations over the past 20 years to have nodules removed from my feet, hands and elbows and on the list now for another operation to have the one removed from under my big toe as it’s very painful to walk or drive - it’s been developing for 6/7 years

The operations are straight forward - It’s coming off the methotrexate to have the ops that cause flare ups that are hard to cope with

Over time the nodules do grow back - I was warned they would. They told me it’s the methotrexate that causes them but I prefer to have nodules developing rather than trying to cope with full blown RA

Tell your rheumatologist and they’ll keep a check on them

[Dobcross1 in reply to Tisboo]

its weird that the MXT actually causes the nodules - but its controlling my RA mostly so im reluctant to change. I'll mention to Rheumatology though. Hope you get yours sorted soon.

[Gilliancheche]

just a thought, but you say you "think" it is a nodule. I would suggest you have it checked by a doctor. I had what I thought was a ganglion a few years ago. Wasn't causing a big issue but saw a doctor and it wasn't. Had to get it removed and tested. All ok but worth checking

[Dobcross1 in reply to Gilliancheche]

Thanks, im going to mention it to Rheumatology and see what they think. I avoid our GP practice if possible - they are hopeless but the only one in my area🙄

[DelicateInput]

Hi, As it is on your feet and may be affecting your walking, I would try to get it removed if I were you. I have one on the middle joint of my middle finger so cannot knock on a door without feeling severe pain and it really hurts if I accidentally knock it. However, I think the foot is a different matter.

If you want the name of a foot surgeon, then private message me.

I had bunions develop overnight when I was 25. I could not get anybody to fix them either privately or on the NHS over the ensuing 40+ years. I was going to go to France to get them done privately when I found a French surgeon who removed one bunion on the NHS. He said there was a huge ball of bone under the foot pressing on a nerve which he had removed on the one foot. He straightened the bunion on that foot at the same time. Low and behold I still have the bunion on the other foot but absolutely no pain and I no longer fall over. He said the problem was not the bunions. It stemmed from what appeared to be an RA incident when I was 25 - at least at the time when working abroad I was told that it was RA.

The UK is not endowed with foot surgeons - but France, Germany and the US have very good ones.

[Wannabeabago]

Hi, i’m not on MTX and I have nodules on my hands.

[Dobcross1 in reply to Wannabeabago]

That's really interesting, RA is just so complicated isn't it, with different experiences for all.

[Wannabeabago in reply to Dobcross1]

Yep. There’s no rhyme nor reason.

[Kags1068 in reply to Wannabeabago]

Hi Wannabeabago

Hope you don't mind me butting in! With the nodules, it is a bit confusing (isn't it always)?! A certain percentage of RA patients develop them as part of the disease - nothing to do with treatments. It's mostly (but probably not solely) those who are seropositive.

There's another group who develop them only if they take Methotrexate. This is called (i believe), Methotrexate induced accelerated Nodulosis. These van appear (and disappear) much quicker than RA nodules, are usually smaller, and can be in slightly different places than RA nodules.

In addition, joy of joys, you can get both! This is what i have experienced. I had RA nodules long before i began MTX 30 years ago. Once i reached a certain dose (not very high) they went wild!! The MTX was reduced a bit, and they settled more. Eventually Hydroxychloroquine was added, as this can counteract the growth effects of the MTX. Interestingly, a mumber of my RA nodules improved once i began biologic treatment. Hope this helps!! 😊 X

[Wannabeabago in reply to Kags1068]

Thankyou, that’s super helpful 😊

[Kags1068 in reply to Wannabeabago]

My pleasure!😊

[Briefencounter]

Yes , I have a large , bony nodule on top of my right wrist bone . Ive shown it to different rheumatologists , some agree that it is a nodule , others say it's just a bony growth . No one seems particularly concerned .

Appart from looking rather unsightly , it can get red , hot and sore , overnight, when I sleep on that side . The surgeon who did my elbow replacement ( and is very keen to straighten my crooked hands ) has offered to "file it down" . However, he has suggested that the trauma doing this would probably cause the bone to grow again ( and even bigger ).

So Im leaving it for the time being as just another RA gift .

[Dobcross1 in reply to Briefencounter]

oh yes, RA just never stops giving does it..🙄🙄

[Deeb1764]

same as others mainly my hands I only report in with them when on a face to face as on flare days they seem bigger then cool off then flare again. Mine are hands wrists and elbows at moment

[Dobcross1 in reply to Deeb1764]

Thanks Dee x

[dippyd09]

I have an nodule on the middle of the ball of my foot. It gets sore sometimes and it gets hardened skin over time. I used to be seen by a podiatrist who smoothed the hard skin off but they don’t do this sort of thing anymore. I would suggest keeping the skin soft as it’s only when it gets hard it becomes painful.

[Dobcross1 in reply to dippyd09]

Thank you so much, that is really helpful to know.