What happens with rheumatoid arthritis?

[Pinkypong]

My mil. Has it and fil is exhausted looking after her. I believe she can’t move without pain and can no longer get in a car, I think she can shuffle with a walker. We haven’t seen them in 3 years as they don’t want to risk covid.
inspired by the dementia thread about how do people actually die with dementia, can anyone help with what happens with RA?
the live 6 hours drive away and don’t want anyone in the house. It’s just awful. I don’t know how to help short of phoning, that seems not much really.

ultra123 how did it go?

Hi, I also have RA. Take a look at the NRAS website and as others have said Versus Arthritis. Both may have helplines you can call for advice. They used to have exercise advice too. I find if I don’t move I do seize up when more. She is likely to have joint damage now from the RA too. Her rheumy team should have a helpline you can call. Sometimes you need to make a fuss. If they don’t hear from you they assume you’re ok. A short course of steroids may help and they can give a depo steroid injection too. They could also get a referral to an OT who would check their house and advise on things like a wet room/shower stool/grip rails etc if they haven’t got them.

@Pinkypong do you mean "specialist nurse", these are common in rheumatology and can be very good.
At my last hospital I had a specialist nurse and rheumatologist. I'm at a smaller hospital now and just have a rheumatologist but can access the specialist nursing team who are really good at answering medication questions or getting me a rheumatologist appointment if there is a problem outside of my general checkups

Oh good grief, now she’s saying sulfasalazine means if she gets covid she’ll die. So we can’t visit or even stay in a hotel and wave through the window. I think she may be potty, she also was convinced insects were growing in her and she could see them coming out of our bathroom walls last time she was here, implication being I’m a crap housewife.

Thanks I read the website, and Nras website, very useful thank you for that.I need to somehow chat to the people in charge, suspect it ain’t gonna be easy!

The DMARDS she's on do not make her particularly more at risk re covid (or anything else). I'm on hydroxychloroquine and work in ED and have had covid twice. At the beginning there was concern that we were immunosuppressed but now it's OK, only really biologics that suppress the immune system enough to make it v risky. Even then- it's a balance. Being hols up for 3 years when already fragile isn't going to do her MH any good at all.

Won't she listen is a dr tells her she's safe to go outside? To meet up with you? Sounds like she needs a professional to tell her the facts so she stops scaremongering herself

Thanks for that lovelillies, I’ll pass it on in a tactful way. It’s a horrible situation, if she can get into the wheelchair fil has to push, and he’s 84 himself.
I am amazed that they aren’t both mad, they probably are. She was, and may still be, up all night scaring herself on the Internet. Fil exhausted with doing all the cooking, lifting, washing etc etc. there’s a little house for sale next to us, they won’t, but I wish they’d move there!

Sympathies @Pinkypong I have RA myself and I’m in my early 30s. I’m on a biologic that wasn’t even available 5 years ago so treatments really are changing all the time.

could you speak to her GP and request a home visit? It sounds like there’s more than just RA going on here.

@Pinkypong seeing insects crawling when not there is something that my mum has had with her dementia.
She doesn't see them all the time but when particularly confused when she had a UTI.

These are two very mild drugs, the step after them not working is methotrexate, and then the biologics. She needs to realise that doing nothing is so much worse, she doesn't have the option of no disease + no drugs.

I'm on both a biologic and methotrexate, before the biologics were available I took methotrexate, sulphasalazine and hydroxiquine - no muscle wastage, well monitored. A few years off to have children and I managed to acquire permanent joint damage. Obviously my kids were worth it but what on earth is she gaining with the martyr act, even having high levels of inflammation can cause heart damage, much worse than the side effects she might not even get, that they'll be looking for.

Can you find her a good nurse practitioner to talk to about it, reassure her. She's clearly too scared of the drugs but not scared enough of the disease.

OP if your mil is going dizzy she needs to see a doctor or anp. She may have underlying issues with heart or blood pressure. Going dizzy increases the risk of falls. Many falls result in further complications to health. She may also benefit from a calcium supplement to help protect her bones.

I have had rheumatoid arthritis for years. I was put straight on a biologic called Cimzia when I was diagnosed aged 31. I self inject every 3 weeks.

I went from immobile and in agony ( think couldn't lift a cup of tea, couldn't walk really, couldn't raise my arms high enough above my head to put my hair in a ponytail etc) to pain free within weeks. It's the only thing I take.

I've had Covid whilst taking this medication and 6 months pregnant and had a snotty nose for 2 days.

I see a rheumatologist every 3months and have been in remission since I started on the medicine.

Only thing is, I am in Spain where the healthcare is significantly better than in the UK. But maybe if you push for her she might get access to biologic treatment. I cannot overstate how life changing it has been. I couldn't believe it. I had no idea what living without pain was like and I can only describe the feeling as euphoric.

According to my rheumatologist (head of department at a huge hospital) - most biologics are very safe for covid as they only target one tiny bit of the immune system. But there are a couple of older ones which are problematic.

Thanks everyone for sharing your knowledge and massive hugs because I wish you didn’t have to know any of this.
i will do some research and bide my time to mention biologics.cimzia sounds amazing, I’m very pleased for you changed ame
she definitely has permanent damage and it would be a question of pai relief I guess. She has had steroids which were great, but you can’t take too often. She said the best was antibiotics but they won’t give them to her again, for some reason. I think there’s underlying stuff going on, and yes mentally that must be beyond awful.
you’ve given me some knowledge to start from and discuss and reasech. Thank you, I found I wasn’t getting too far with websites, though that’s probably me.

These cashmere wrist warmers from eBay (turtle doves seconds- unnoticeable faults though!) are amazing for wrist pain

@lovelilies I have those, they are fab! Can I suggest pairing with alpaca socks. The combination is amazingly toasty warm so much that it makes the rest of you feel warmer.

Ooh thanks both, they look very snug. I have a chum that swears by turtle dove wrist warmers they also have a really nice story behind them. Will be buying both for both of us! And a virtual pair for all here x
I tried talking to mil today but she doesn’t want to discuss. She’s seeing someone next week, but says you can’t ask doctors about cimzia etc as they will mark you down as being difficult and not help, and they’ve written dreadful things in her report. When I ask what, she doesn’t want to talk about it.
🙄 If there’s one thing I’ve learnt it’s keep taking the medication!
hugs and 💐to you all, thank you.