Treatment for finger-bending disease may be ‘gamechanger’

[helvella]

I know that Dupuytren's has been mentioned more than a couple of times but cannot locate any others.

Today's Guardian (no charge to access) has this quite good article. It could be of great relevance to sufferers.

Treatment for finger-bending disease may be ‘gamechanger’

Clinical trial seems to show Dupuytren’s disease reversed by rheumatoid arthritis drug

Full article here:

theguardian.com/science/202...

Full Lancet paper:

Anti-tumour necrosis factor therapy for early-stage Dupuytren's disease (RIDD): a phase 2b, randomised, double-blind, placebo-controlled trial

Jagdeep Nanchahal, PhD

Catherine Ball, MSc

Ines Rombach, DPhil

Lynn Williams, PhD

Nicola Kenealy, BSc

Helen Dakin, DPhil

et al.

Show all authors

Open AccessPublished:April 29, 2022DOI:doi.org/10.1016/S2665-9913(...

thelancet.com/journals/lanr...

Anthea55 Rufty10

[TSH110]

Thanks for this helvella. Lots of my relatives have it the op is not very nice but one found the little finger such a menace she wanted it amputated, the op helped. I am suspicious I am developing it tho I have been told by two consultants I don’t have it it’s just arthritis and trigger finger. One said I was too old to get it, but one of my relatives was in their 70’s before it materialised, so that can’t be true. I’ve a few years to go yet before 70. I most certainly have ledderhose disease with a massive lump (it feels massive but probably isn’t, it feels like a big marble) in my foot but they just ignored that when I mentioned it, for some odd reason no one is very interested in ledderhose who deals with duputchrens but it’s exactly that but in the foot, at least it doesn’t normally make your toes curl like the fingers, but I have awful problems with my feet not sure if they are related to it, another relative has that and duputchrens in both hands looks like they’ve been crucified with the op.

It sounds like a great break through In treatment which has not been great. I’d like to see if it helped my hand feel like a hand again not a painful claw and shrink the ‘alley’ in my foot. Because of my thyroid experience I don't believe anything a consultant tells me any more.

I hope GP’s will be allowed to prescribe it.

[helvella in reply to TSH110]

There are times I feel that one of my posts might really help someone - and this is one.

(Many posts look back rather than having a positive forward-looking content.)

[grumpyold in reply to helvella]

I am one of the members who found this post very helpful.I, too, feel like I am walking on a marble ( like TSH 1 10) but didn’t realise it was called Ledderhose disease.

I looked at the pic of the foot operation in the additional link.

Pretty gruesome.

My dad suffered with Dupuytrens for many years and was never offered help.

Thank you for all you do and advice you give on here.

[BB001 in reply to TSH110]

I've just been reading about this on Google. Healthline mentions some research that says taking a magnesium supplement helped. Maybe doing so would help your foot.

[TSH110 in reply to BB001]

Thanks for this suggestion I eat a lot of almonds because they are high in magnesium….and I like them, but I do have mag supplements I might start taking them again see if it helps. I ought to try the mag spray oil I have directly in the problem areas and get an Epsom salt bath - nothing like a multi pronged attack eh? The foot trouble is really getting me down I was running 25 miles a week no problem until this started up. I feel really unfit now too although I still walk at least 6k a day.

[BB001 in reply to TSH110]

Apparently there are 4 different types of magnesium, that are good for different things. I remember magnesium citrate is helpful for sleep if taken at night. Perhaps someone else can remember the rest?

[TSH110 in reply to BB001]

I’ve got magnesium malate

[serenfach]

Thank you so much for that. I have Dupuytren’s (my right little finger)and it was operated on years ago and came straight back. I also have arthritis which the GP ignores (twisted little finger left hand). I also have Dupuytrens in my left foot (its called Ledderhose disease which always makes me want to slap my thighs) but luckily it is not painful as I have Peripheral neuropathy which means my feet dont feel much.

Add the thyroid and the vitiligo, and I get the distinct impression my body does not like me!

[TSH110 in reply to serenfach]

Apparently it’s called ledderhose after the man who first described it, I did wonder how in earth it could have got that name. Do you think it causes problems in the foot even the neuropathy? If it’s in both feet I suppose it can’t be responsible. Mine just ache like hell all the time like they are on fire. All the joints burn when I think about it. My hand feels like a puppet’s with strings to the fingers being tightened in the palm so it’s more and more claw like. It is oau fly all the time too but I just ignore it. If it is not due to Duputchrens I’d like to know what it is due to. All my close relatives on the maternal side bar two - one died young so was highly unlikely to have developed it before croaking, the other one has trigger finger which I have read is often a sign of it. Even a cousin has had an op for it. Plus I have that ledderhose lump it can’t be anything else as far as I can determine. I read it’s 80% inheritable so what the hell I have if it isn’t that I really don’t know. Trouble is it’s just like my thyroid story - gaslighted again and again told I didn’t have it when I did but I believed them and nearly died because it was left untreated for so long.

I hope this isn’t a repeat performance, but at least this treatment holds promise if one could access it in the early stages. I can’t even get a diagnosis. Of course I could be wrong but the family occurrence of it is very strong.

[helvella in reply to TSH110]

A bit here about it:

rarediseases.info.nih.gov/d...

Although first described by Georg Ledderhose in 1897, the etiology of the disease is still unknown.2 Current theory suggests the pathology may be a compensatory response to mechanical forces.

journals.sagepub.com/doi/fu...

[TSH110 in reply to helvella]

Very interesting. I hope that the rheumatoid arthritis drug will avoid operations like the one illustrated - it was quite shocking yet grotesquely fascinating.

[Hylda2]

Have four constrictures in my hands and one under my left foot. Have a horrible feeling I’ll end up like Bill Nighe !

[TSH110 in reply to Hylda2]

Has he got it? Such a beautiful voice though ☺️ Indeed he does, but it doesnt seem to bother him having two fingers glued to his palm it started in his 20’s didn’t know it could happen that early on.

How does the foot stricture affect you? I presume your hand is badly affected.

[helvella in reply to TSH110]

Such a beautiful voice though ☺️

One of my favourite to listen to in the right place.

Why we love Bill Nighy

bbc.co.uk/programmes/articl...

A Charles Paris Mystery

Radio 4

Bill Nighy stars as actor-cum-amateur sleuth Charles Paris in the stories by Simon Brett, dramatised by Jeremy Front

bbc.co.uk/sounds/brand/b00x...

And, yes, he has it:

express.co.uk/life-style/he...

[Hylda2 in reply to TSH110]

I can feel a cord and a lump under my left foot. The little finger on my right hand has been slowly bending for years. Both thumbs have cords forming and the left palm is affected. If they all take years no problem but the thumbs have only just appeared

[TSH110]

Gosh it’s quite generalised isn’t it. Glad it is not causing you too many problems and hope it stays that way.

I can feel the lump in my right (I think I said left before but I’m wrong there) foot just below the front pad area before the toes (for want of a better description) on the left hand margin of the foot. There seems to be a cord going under the pad bit it is uncomfortable to touch. I’ve given it a spray of magnesium oil. It causes pain walking. My right hand has a lump in the palm and the little finger is quite crooked over, the middle one with trigger finger sometimes becomes displaced bending in to the palm the others feel stiff and are contracted compared to my left hand which seems unaffected, ditto the left foot. The hand stuff happened after I was bitten on the palm by a spider on my allotment - who knew weeding could be so hazardous! - and my hand swelled up like a bunch of bananas and got infected there was a lot of tissue damage at the bite site where I now have the lumpy area where duputchrens nodules are located according to all the diagrams. I know trauma can set it off.

I can use the hand ok but repetitive tasks can hurt and set off horrible cramp in it. Any fine control tasks - threading needles, tying plant ties, bows etc are a challenge they feel like bunches of bananas not fingers!