added twist

[Brychni]

Hello all

Haven't posted for a while as generally, things OK ish.

Had a few ups and downs with the HRT but seems to be good at the moment and overall a benefit to my various UIA related issues. By no means a cure.

Still on hydroxyc. which is still keeping the Raynaud's at bay and I do feel fewer flare ups on it.

However!! I have developed what is obviously (Dr Google diagnosis) fibromatosis also known as Ledderhose lump on the sole of my left foot. My husband found it while massaging my foot because it was feeling a bit numb after I had been running. Not painful or even noticeable without touching it.

Anyway it turns out that this is the foot version on Dupuytren's which runs rampant in my family. So my grandmother (she of the blood disorders and blood cancers) also had Dupuytren's and had 4 fingers and parts of her hands surgically removed. My eldest son who is 33 also has Dupuytren's in both hands and is about to go back to the GP because it is becoming bothersome and a bit painful in the right hand.

I have had serious problems with my shoulders and elbows over the past 2 years in particular my right shoulder. The pain was unbearable, I had steroid injection, (did nothing) accupuncture (also nothing) . During the worst time I had stoppped all DMARDS but it got really bad and I feel going back on hydroxyc. definitely has helped. However, my amazing physio said that encapsulitis (frozen shoulder) is associated with **drum roll** Dupuytrens and is often seen in patients with Ledderhosen's and Dupuytren's. Not enough research has been done (don't know why) but it is strongly suspected to be chronic inflammatory autoimmune issue. In the news recently was a hopeful story about adalimubab.

theguardian.com/science/202...

I wonder what the chances are of getting on that quickly!! I finally got my CGRP Ajovy injections which are also biologics for migraines but had to take all the other unsuitable drugs with hideous side effects first - for years. At 51, although grateful to be largely migraine free so far, I feel it's a bit late in the day. I'm also wondering if these biologics work as a preventative or do you have to be totally disfigured before they will even countenance the idea of prescribing it.

Hope everyone able to enjoy the weather. My garden is finally looking a bit better and we have had four little chicks hatch with their mother 2 weeks ago.

x

[Fruitandnutcase]

Oh goodness! Glad the hydroxy is keeping your Raynauds at bay. What a really interesting post about Dupuytrens, I hadn’t seen it.

I’ve got Dupuytrens in the little finger on my left hand and when I saw someone at the hospital years ago he checked my feet for lederhosen. My grandmother comes from Orkney which ties in with its nickname ‘the Viking disease’ I tell people that my granny was a Viking. My mothers sister had Dupuytrens too. I think mine may be partly down to shutting my little finger in afar door when I was about 11.

The nail on that finger has never grown right since then - it has a piece of cartilage or something that grows behind that actual nail - looks like a bit of string growing there. The Dupuytrens progress more rapidly a few years ago when my husband managed to push my car seat back over it when I was searching for something under the seat! The air was blue believe me and my finger bent a few more degrees after that.

I could have had my little finger operated on about eight years ago but for various reasons - including being scared to have a general anaesthetic and knowing people who had had the op then had repeated ops after the first one - but I didn’t.

Like your son I remember it going through a spell when it hurt but it has passed that now. I wish I had done something when all I needed would have been the needle aponeurotomy alas it’s to far gone for that now. There is also a consultant at our local hospital who treats it by what he calls WALANT - which is wide awake, local anaesthetic, no tourniquet. He talks about injecting the anaesthetic into the hand ‘very slowly’ so something makes me think it might be pretty painful and I’m a wimp, besides I thnk things for me might be beyond that too.

Interesting about the encapsulates - I had a shoulder problem last year - it followed on from a broken wrist, then CRPS in the hand of the wrist I broke then blow it all if something extremely painful didn’t happen in the same shoulder. I don’t think it was frozen though because the physio I saw could raise it for me without any pain - I just couldn’t do it for myself. It’s ok now or more or less ok.

Anyway thanks for a most interesting post. Tell your son to look at having it treated while he is young and fit - he might qualify for s9me of the less invasive treatments - I really wish I had done that.

I found this site dupuytrens-society.org.uk- might be worth you looking through it and deciding it it would be a good idea for him or not. Not sure it didn’t put me off.

Good luck with all the rest ☀️

[Brychni in reply to Fruitandnutcase]

Thanks so much for the info - I have forwarded the treatment info to him. his palms look really bad, I feel so sorry for him. He loves rock climbing and I can't bear the thought of him having fingers cut off. the actor Bill Nighy has it and I can't understand why he hasn't had them treated. his fingers are bent right down just like my grandmother's were.

[Fruitandnutcase in reply to Brychni]

Oh that’s such a shame if your son goes rock climbing I imagine eventually it will prevent him from doing that.

I’ve just googled and found a photograph of Bill Nighy - I didn’t realise he had Dupuytrens- you can see one hand and I see what you mean. I suppose the little finger on my left hand looks a bit like his.

I was put off because of the general anaesthetic - we had an elderly friend who had a big operation and never really recovered after his anaesthetic. Also I had my consultant appointment around August when the new round of trainee doctors start.

The young chap I saw was very sweet and when he had finished examining me he said he would ask Mr whatever his name was to come and see me. He disappeared and then appeared kind at the door looking very embarrassed and said ‘Mr Whatsit says he doesn’t need to see you and you can just go home’.

So between worrying about a general anaesthetic, me taking offence about the surgeon’s lack of interest - the clinic wasn’t busy! - the operation was going to happen at an outpost not the main hospital and my son due to come over from NZ at the time it was all due to happen I just didn’t have it done. I really wish I had had it done by needle aponeurotomy years ago when I first read an article written by a journalist who had had it done in Paris. Unfortunately it’s too late for that for me now.

I’ve had a look and found more about WALANT surgery - there is actually a lot to be found about it and you can see exactly what is involved.