Arthritis at age 20 - handhold please

[cocunut]

Hi guys. Shamelessly posting in chat for traffic. I just need a handhold really.
I have been seeing my GP for back pain on and off since 2020 and after pretty much demanding blood tests and a scan after finding a lump, I have been diagnosed with rheumatoid arthritis after my Rheumatoid Factor level was 3 times higher than it should be.
Ironically enough, the lump was a lipoma!
I am 20 years old. It feels so wrong.
I am waiting on an urgent rheumatology referral (3 weeks). My doctor has been so good over the past few months. She is a young woman who really did listen to me and I can't fault her one bit.
Just looking for a handhold or any advice from anyone who's been through the same thing. I am reluctant to take immunosuppressants as I work with young children but if I have to to stop the progression then I will.
Do I have to tell my work? What do I do?
Any advice or handholds welcome ❤️

I have psoriatic arthritis so slightly different but similar symptoms and treatment when I was about the same age - maybe a year or two earlier because I mainly managed the pain at university with alcohol. I've been on most treatments over the years and have had 10+ years on biologics after other treatments haven't worked and my condition is now very well controlled. I've had a few flare ups but they are managed with steroids and painkillers and I have almost a completely normal life. I have a couple of joints that have signs of long term damage but nothing significant and I'm in very good health. I have generally found my immune system to be much better when my arthritis is under control - when it's running riot, I tend to get ill more often (as well as the joint pain/fatigue) but when I'm settled on my medication my immune system is much better. My consultant said it wasn't that unusual despite the warnings about a compromised immune system as a side effect but I'm also just a lot healthier in terms of exercise and eating when I'm not in pain.

I know it's scary especially at such a young age but there are lots of treatment options. It is also one of those conditions that has a lot of money thrown at it from a research perspective so new drugs are emerging all the time.

Thank you @mynameiscalypso . I haven't been prescribed medication and won't be until I've seen a consultant rheumatologist, but the ones my GP mentioned such as methotrexate seem like they can have nasty side effects which I suppose is my main concern.
I'm glad you're doing good and thank you for the support.

Hugs from me too. I have seronegative rheumatoid arthritis, which means rheumatoid factor doesn 't show on my bloods - so it took over 8 years for me to get a diagnosis.

At least you have been diagnosed fairly quickly and hopefully can get started on some treatment to prevent pain/joint damage.

I'm on methotrexate - and for me it was a game changer and works really well. I opened your thread, as I'm worried about my 18 year old daughter who is showing signs of joint problems too.

Best of luck and if you don't mind sharing, which joints were first affected for you?

Methotrexate is normally the first line treatment, for many people it works very well. I was on it for a while and never really had any side effects and it's done absolute wonders for my dad. Without being cynical though, the main reason to try it is that you have to have 'failed' two first line (ie cheaper) options before they'll look to move you to biologics which are the better treatment but are hugely expensive so you have to demonstrate why you need them. Or, at least, that's the medication path for PsA.

Hi @littleblackcat27 . I started having lower back pain back in 2019 (I was doing my GCSEs!).
My first "flare" was in 2020 when I bent down and my lumbar spine completely seized up - I was in agony for days.
Myself and my parents chalked it up to sitting studying during lockdown as it was always worse when sitting - first key sign.
I started seeing a chiropractor two years ago who recommended I had an MRI, but the NHS wouldn't offer it and I don't have private healthcare, so once again, just ignored it.
It was only this year after finding the lump and continually having dull back pain (even after the chiropractor discharged me and said there was nothing more she could do), that I got blood tests.
At present, the only other parts of my body that seem to be affected are occasionally my knees, and I have very clicky fingers and wrists (no pain though).

@littleblackcat27 something else to note - my pain has always been so much worse in the mornings which is apparently a key sign. Even after new mattresses etc.

Hopefully the methotrexate is kind to me. I've never been on medication before in my life (except the contraceptive pill for PCOS).
Something that is bothering me is that I have reduced fertility anyway with PCOS and apparently methotrexate reduces it as well. :(

@cocunut I don't think Methotrexate reduces fertility per se but you have to be very careful not to conceive while on it because of the risk of birth defects. If you're planning to TTC soon, it might be worth asking for an alternative - there are other options out there which are fine.

OP, a big handhold from me. I've also just been diagnosed and have an appt with a consultant at the end of the month. It was a real shock but I'm In my sixties so much worse for you at your young age. I thought I had issues because I was just getting older and I'd got fatter over the last 3 years.

Fingers crossed ( if we can do that!) for both of us and anyone else going through this.

Ahh thank you, that makes sense. Not TTC for a while so that's a relief :)

Thank you so much. Good luck with your appointment. Mine will be around that time too. Let me know how it goes.

I will. You too!

Hi @cocunut

How are you, Have you had your appointment? I saw the rheumatologist last week. I have high markers for RA but I'm showing no clinical signs at the moment so that's good for me, although do have osteoarthritis in my right hand and knees. (Didn't know you get both).

I've been told I may develop it over the next 10 years or I may not.

I hope your news is not too grim. X