Daughter diagnosed with Rheumatoid Arthritis any advice or help so I can help her?

[rockster15]

My 18 year old daughter has recently been diagnosed with rheumatoid arthritis. It’s been awful to see how bad she can be. She got to the point she literally couldn’t walk due to the fluid/swelling and couldn’t even pull her bed covers on herself.

She has both the rheumatoid factors and the antibodies which apparently means it will be more aggressive.

The hospital have been great to be fair and got her straight onto meds at the first appointment. Methotrexate isn’t helping and so they are hopefully moving her onto biologics in the next few weeks. She’s still on steroids as well.

She was completing a childcare apprenticeship before her diagnosis but couldn’t manage to get out of bed never mind look after babies for 10 hours a day so she’s so lost what she wants to do with work or even if she will be able to work and she’s devastated as she always wanted to work with kids.

She’s been really positive to be honest with the odd bad day but I’m just after any advice really or what I can do to help her. I’ve took her to every hospital appointment and applied for Universal credit with her. Just at a loss as to what I can do. It’s hard when she’s so young as well 😢 Thank you

What a great mum you are OP. The good news is that now she has a diagnosis and treatment, she will never be as ill as this again - every hint of a flare will be dealt with.

I was diagnosed at 19, before biologics, and was very ill for about 2 years. However, with the right treatments (now on biologics- which are amazing) I live an almost normal life. My only problems come from damage sustained during these two years and I flared up badly with COVID - but for 25yrs of illness this is nothing. I do parkrun regularly, the odd (slow) triathlon, had no problems having kids or looking after them, work and walk dogs every day.

I think I'm careful with my health, which is no bad thing, but I did feel a bit "old before my time," and out of sync when I was first diagnosed. However, this comes good as most people have something do deal with at some point and it's almost like getting your "learning to deal with the fact life doesn't always go to plan," out of the way. I have definitely enjoyed things like parenting more because of this attitude. I would definitely be capable of primary teaching and probably working with babies. I think jobs with nightshifts are the only thing I could t consider as I do get worse with poor sleep.

Good luck to your DD, take all the healthcare you can and pay attention to the small improvements. Don't make life decisions until she's better, it's okay to take some time.

There is a Facebook group called Arthur’s Place Social which is for 15-35 (ish) with RA so it’s good to have other people who understand what you’re going through.

It's incredibly hard for patients and their families when they are first diagnosed. Especially when they are so young. They are usually in a bad way, and the diagnosis often comes as a shock. There is so much information to take in. The treatment target will be remission, or low disease activity, so that they can lead a relatively normal life. Usually with RA they need to have "failed" two disease modifying drugs before moving to a biologic medication. Every patient is different, so it is often a case of trial and error before the right medication for the patient is found. It's great your daughter is to start a biologic so soon, they can be life changing! And the fact she is moving onto it so quickly should mean any new damage to her joints is prevented. There are different kinds of biologics that work in different ways so if one doesn't work there will be others!

As a Rheumatology nurse, I think @Suekeeperabove has it! (She is the expert in her condition at the end of the day!) I've not much more to add 😄

The best thing you can do as her mum is to keep being supportive, as you are doing, but be careful not to be too over-protective (which I'm sure you're not) as in my experience, while I understand it, over-anxious parents make for over-anxious patients, who find it harder to cope.

Once she is in remission she should be able to carry on as normal. Always a good idea to exercise in the way she enjoys and eat well, as being a healthy weight will also help her joints. It is quite normal to get some flaring along the way, especially if, for instance, she has had an infection which can set joints off. For any flares that don't self-settle within a few days she will have an advice line to the nurses that she can call. I'm sure you will have both been told all this anyway so I won't do an education session 😄

Best of luck to her!