20 year old DD diagnosed with a 'Connective tissue disorder' today...I'm clueless

[Sunnytimes21]

Hi all, I'd appreciate any insight into this at all. My DD had bloods back today which strongly indicate a connective tissue disorder. She will be referred to the hospital for further tests to determine which, doctor says most likely rheumatoid arthritis.

I've had a quick Google as I'm at work but know that there are a lot of people on here with personal experience and I'd appreciate any help/advice you can offer at this early stage. Thank you

P.s her symptoms are exhaustion, stiff joints, ceased hands in the morning, light headedness

I was diagnosed with lupus/multiple connective tissue disorder at 26 after a lot of headaches, dizziness, hair loss, fatigue and chilbain-like rashes on my hands. RA tends to have a similar treatment regimen as lupus so she'll probably be prescribed DMARD (disease modifying anti-rheumatic drug), steroids, ibuprofen or a combination of those.

It sounds scary but rheumatic illnesses respond very well to medication and are also easily manageable, long term conditions. She'll be feeling a lot better after a few months. The first year might be intense (frequent bloodwork, tests, potential side effects, mental toll of accepting the diagnosis) but everything will settle down. When I was first diagnosed I cried for 14 days and couldn't stop thinking about how it might impact my life but over 10 years later I barely give it a thought. It's just a default and relatively boring part of my life like being short-sighted.

The medication I took from the start was hydroxychloroquine, now infamously known as the covid wonder-drug. It's an anti-malarial medication that works as a DMARD and frequently prescribed for RA as well. I had no side effects when starting (you can taper upwards with 1/4 pill per day for a few days, then 1/2 a pill etc until you reach the full dose). It's very safe and widely tested. I took it throughout pregnancy as well without any issues. The only potentially serious side effect is eye damage though that only increases after 5 consecutive years of taking the drug.

At the moment I take 1 HCQ a day and have a yearly bloodwork and a yearly eye exam. I don't have any symptoms and have a normal, active life (before having a baby I travelled a lot and currently a full-time mum to a very active toddler). I feel much better now than I did the 2 years before diagnosis. Best wishes to your daughter and hope she'll be better soon!

I have RA. Diagnosed at 32/33 and now 41. The first year or two was brutal trying to get my symptoms under control and find the correct drug regime. I was on sulphasalxine, lefluenamide and naproxen for a year. Don't be scared when they talk about low dose chemotherapy, it works really well for a lot of people. I ended up on biologic injections. Humira and now Cimzia. They are amazing. I can be in a flare, take my jab at 9pm at night and in the morning it's like I'm almost normal again. All medication has down sides though and for me biologics make me much more likely to get every bug that's around.

@CoffeeDay thank you so much for your reply, it's exactly what I was hoping for. She suspected Lupus a year or so ago after googling symptoms. Doctor is more inclined towards RA. But we won't know for sure until there are further tests. She also suffers from hair loss. I've reassured her that things can only get better now she has a (sort of) diagnosis. She's 350 miles away at uni so it's tough to know how to help her.

@fantastaballs that doesn't sound like an easy journey. It's good to know that there are lots of options for treatment though.

At times it's been awful but to be honest the experience has been transformative for me. I'm much more grateful for my good days and I've found an inner peace that I never had before. I have had to learn my limits and respect my body. Your daughter is young and so hopefully doesn't have any serious joint damage yet. If been complaining to my gf p about knee pain for years and they always fobbed me off. Then when I was diagnosed by blood test the Rheumy asked where it hit the most. It was in my hands and my knee. They did an X-ray and I've got pretty bad damage, I need a new knee. But can't even think about the nhs doing that until I am at least 45.

If she has any kids, It may be worth you looking into life insurance for your daughter. By the time I had thought about it my ra was already quite progressed and as I was older it cost me a fortune. I wish I'd have been able to take out a policy when I was younger even if it meant an earlier diagnosis. Also, while a vast Maori of cases are mild to moderate, there are cases where it odd incredibly serious and can shorten life expectancy. It's all a great deal to take in but read read and read some more. In some propeller it can be controlled by diet but it's very very strict. Take a look at the Autoimmune protocol by (I think) Dr. Terri Whal and the paleo diet for a starting point.

Encourage her to accept the most comprehensive treatment from the outset, rather than 'take NSAIDS and come back via your GP when it's worse' - mainly because once you're off the Rheumatology books, it's an absolute bastard to convince anybody to put you back on again if you're female . Asking about starting a medication with 'and could a steroid pulse/injection to get things started before the medication starts taking effect be considered?' could mean they agree to an injection that could give her significant relief almost immediately whilst waiting for the other meds to get up to therapeutic levels.

I'd say don't accept a 'try these to help you sleep/deal with pain, it's a very low, tiny dose and they help people in pain' because 'these' are usually amitriptyline - an antidepressant prescribed off licence. I'm biased against them because they made me go a bit loopy because I wasn't depressed in the slightest, I had untreated inflammation, but as soon as they showed up on my medication history, everything physical was written off as psychological, from horrendous dizziness due to neck and shoulder inflammation following a shoulder dislocation to hands bright red and blown up like balloons.

A useful phrase could be 'No, I do not believe I am in pain and tired because I'm depressed, I'm in pain with swollen joints/early morning stiffness that persists for x hours and I would like to start medication that acts upon the inflammation, please'.

Another danger is the confrontational medical 'professional' saying 'SO, why is it that you THINK you have an inflammatory disease?'. Being able to respond with 'I think the ESR of ..., CRP of ... and a positive test for ... was a clue, but ultimately, I listened to the doctor who said these combined with my symptoms of joint swelling, early morning stiffness were consistent with a diagnosis of...'

Finally, adding on a question about other treatments, such as Podiatry/Physio referrals is handy, as they can be great for regaining function after an extended period of pain.

It's particularly hard for girls who have been socialised to be polite and agreeable, but there's a level of robustness that is sadly needed to navigate institutional sexism in medicine in order to get the most effective treatments. She needs to tap into her inner stubborness, which is what gets her out of bed in the morning whilst untreated - and answering questions politely but utterly deadpan in their resolve is so useful in ensuring she isn't sent off with a head pat and a prescription for psych meds.

Some good advice here. She will see a rheumatologist. The protocol is to treat these things aggressively so hopefully she will be offered a DMARD straight away., perhaps with NSAIDs (eg naproxen) temporarily. I am older but took hydroxychloroquine at first which made me symptom free for many years.
These drugs take 2 or 3 months to work. She may be offered steroids to bridge that gap, though there are many disadvantages to steroids.

If it's allowed if at all possible go with her to the appointment.
Take a list of things that she needs to say and questions to ask.