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Autoimmune disease

My daughter’s knuckles are really inflamed. Autoimmune?

17 replies

Mummyoflittledragon · 03/12/2023 10:28

My 15 yo dd went away a month and a half ago with school and played knock door run a lot, hurting her knuckles on her right hand. No issues beforehand. She definitely has Reynard’s (undiagnosed). I thought the swelling would settle and a HCP at the doctors suggested ibuprofen gel and exercises.

She cannot remotely make a fist. Her little finger is bent. The swelling hasn’t gone down and has now started to spread to the other hand - see nodules on 2 fingers on left hand, she is right handed. To my untrained eye, it looks like this could be more serious. A google suggests Scleroderma, which is linked to Reynaud’s. Could this be linked or something else?

Her hands in the pics are really red and her circulation is not great at all. Her bedroom gets heated to a high temperature but she goes out without gloves etc and the pics were taken not long after coming home from school.

Reason I’m asking is because she has a seizure condition (Reflex Anoxic Seizures) brought on by any kind of medical setting and she won’t consent to blood tests. I get I need to take her to the GP but if anyone could give me some info as I am really worried having read up on this.

My daughter’s knuckles are really inflamed. Autoimmune?
My daughter’s knuckles are really inflamed. Autoimmune?
My daughter’s knuckles are really inflamed. Autoimmune?
OP posts:
WildAndFree123 · 03/12/2023 10:38

This is how my rheumatoid arthritis started. I would get her to the doctor if at all possible as early medication helps a lot of the damage from occurring and there are long waiting lists for rheumatology.

Mummyoflittledragon · 03/12/2023 11:54

Thanks yes I did also consider potentially RA. She has mocks for the next 2 weeks so I’ll have to time it in between them… especially if she has a seizure in the GP, which she did not last time, the time before, only missed it last time as the HCP offered to call me back.

OP posts:
handmademitlove · 05/12/2023 09:38

Would online appointment work - is it the place or the context? Would a blood test at home work if needed?

If you have an econsult system I would send the pics in and see what they say. It definitely needs looking at!

Mummyoflittledragon · 05/12/2023 15:05

Thanks. She showed me her foot yesterday and it’s swollen on the side. Hoping it’s her shoes, but unlikely. I decided the best course of action is to see a private rheumatologist as this will be the most gentle approach… nice comfy environment… plus she’s had symptoms for 2 months now so I want to avoid any more delays.

Idk about blood tests though. I think the only way would be if the doctors agrees to prescribe diazepam. I imagine this is unlikely. I already asked about this for her booster vaccinations, which she hasn’t had. I have booked an appointment next week. Dh has booked the day off work and we are having to travel a long way as she’s under 16.

OP posts:
Redannie118 · 12/12/2023 14:34

Hi op not sure if you are still following, but I have Scleroderma and my hands look exactly like that. Rather than type in a long post if you are not around, drop me a DM if you want to chat.

Mummyoflittledragon · 12/12/2023 14:36

Redannie118 · 12/12/2023 14:34

Hi op not sure if you are still following, but I have Scleroderma and my hands look exactly like that. Rather than type in a long post if you are not around, drop me a DM if you want to chat.

Thanks. Will DM. Xmas Smile

OP posts:
JJ2009 · 20/12/2023 13:05

Another option to consider is Juvenile Dermatomyositis. It can show as skin or muscle or both. My daughters looked slightly different but it’s worth considering.
Definitely worth seeing a rheumatologist as soon as possible so that you can get a diagnosis as there is lots of crossover with rheumatology conditions.
Good luck.

Mummyoflittledragon · 20/12/2023 16:55

Thank you. I’ve managed to find someone closer so have changed the appointment to the beginning of the new year, which is good news at least as the journey would have been stressful. Her little finger joint has been permanently bent for some time now, which I hadn’t spotted, which I imagine is perhaps an indicator of RA. Idk. Will see. I hope your dd is ok. Juvenile Dermatomyositis looks nasty.

OP posts:
Feralgremlin · 20/12/2023 17:03

Like other PPs, this is how my RA looked before I got diagnosed and on treatment so definitely think you’re doing the right thing by getting a private rheumy appointment. Really hope you and DD can get to the bottom of it and get it treated soon!

Mummyoflittledragon · 21/12/2023 07:33

Thanks, me too! Xmas Smile

OP posts:
Motherhubbardscupboard · 21/12/2023 07:51

Just wanted to say, I believe you are meant to be seen on the NHS within 2 weeks for inflammatory arthritis, although my DC waited 5 (I didn't know this until they got to their first appointment where the consultant was surprised they hadn't been seen sooner. if I'd known, I could probably have hurried it along by calling the consultants secretary and getting a cancellation). The disease can progress really quickly so it's important you see someone as soon as possible. She won't be able to take the medication for RA without regular blood tests, probably every 2 weeks at first, later on it will be every 3 months. This is to get the level of medication right and monitor the liver function.

Alwaysanotherwine · 05/01/2024 17:54

my dd had this a few months ago and had been diagnosed seropositive RA

shes 16

shes on meds but doesn’t need blood tests as not methotrexate

go GP soon as dd escalated really quickly and 65 months on she’s worse rather than stable

Alwaysanotherwine · 05/01/2024 17:54

5 months

Mummyoflittledragon · 10/01/2024 10:52

Apologies I’ve just come back to the thread. Dd has now seen a rheumatologist and he confirmed this is just Reynauds. It actually got worse than the pics above before improving somewhat and I showed him these as well. He’s just told me to keep an eye on it. Many thanks for your posts.

OP posts:
Getorfthelawn · 21/01/2024 00:05

Did your daughter have Covid recently? My then 9 year old had hands like this when she first had Covid (no other symptoms). They did get better but still flare up every now and again 2 years later. Her toes do too to a lesser extent. She saw a rheumatologist and all tests didn’t show anything so we were advised it was likely reynauds/chilblains and to keep her hands warm and moisturised.
I hope it isn’t anything more but it’s definitely manageable for her, and been better this winter as she wears wrist warmers a lot of the time.

Mummyoflittledragon · 21/01/2024 00:16

Thanks for your comment. I don’t think dd had Covid recently. Zero symptoms but you can never tell from that I suppose. It started from her playing knock knock run a lot on a school trip mid October. As I say, the rheumatologist has confirmed just reynauds. Her hands stayed so much better this last cold snap so I hope the flare up was in part due to temporary ligament damage. Both her hands seem permanently swollen but not to the extent of the pic upthread.

OP posts:
Motherhubbardscupboard · 21/01/2024 07:58

Although it doesn't seem to apply to OPs DD, just thought I would mention for anyone else reading that my DC's condition started a few weeks after a fairly bad COVID infection pre vaccinations. I think autoimmune conditions are often triggered by a virus, and it certainly seems so in their case.

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