My sons diagnosis

MyBoyRio

hello! I’m new to this so this is my first post.
my son a year ago had a problem with his foot and was unable to walk on one foot, he was 18 at the time and he still cannot walk with his heel down just leans on his toes. He then had uveitis in his eye. Then his pelvis was hurting, then his elbow bent! After a year of drs, consultant appointments and tests (ended up going private) he got a diagnosis of ankylosing spondylitis, psoriatic arthritis and mixed in with depression as he lost his job and has been indoors hurting from head to toe and not being able to be active. He has now been put on steroids and methotrexate. It’s only been about 7 weeks and my son is very pale, lethargic and finding it tough as this was just a shock as he was just a healthy boy who kept fit and now he feels it’s been taken away!

we went to a local group for people with arthritis however, everyone was a woman over 70 and my son was a bit embarrassed and shy. The ladies were so kind and helpful but we didn’t stay long. So I have come on here to get any advice or help as I’m so worried about these strong drugs he’s on. I wish I could take this away from him but this is all new to us.

Hope to hear from some one 🙏⭐️

Maria

PJoanne

Hello @MyBoyRio and welcome to the forum.

Here is a link to some information about social media groups that your son might like to join, to connect with his peers experiencing similar circumstances.

https://www.versusarthritis.org/about-arthritis/young-people/connect-with-other-young-people/

And here's the link to the young persons page of the VA website.

https://www.versusarthritis.org/about-arthritis/young-people/

Some information about Ankylosing Spondylitis :

https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

The helpline team are wonderful and it's free to call, the number is at the bottom of my post.

Best Joanne

MyBoyRio

hi. I was trying to change the topic as yea haven’t had much response. Not sure how to change it.

Thanks for your advise

frogmorton

Hi @MyBoyRio

I am so very sorry to read your post about your son. You totally have my sympathy my own youngest was diagnosed with leukaemia at 16 (she's fine now) so I understand how awful this is for you to watch and be powerless with.

I also have arthritis and experience very similar to your son. I remember the day we were in the children's ward at the hospital with my daughter. A boy maybe 14 was being taught how to use MTX and thinking oh no the poor boy. 2 hours later we got our own diagnosis, but your post reminded me about how gutted I was for him.

When I first started with this I also went to my local (then arthritis care) group with two friends I had made here. We were by far the youngest all 39 to maybe 44 so I can only imagine how an 18 year old felt. We never went again.

I think you should look into what the moderator gave you for support, but ask us lot about anything medication ad arthritis wise so many of us take mtx. Hopefully it will be the very medication for him but if not there are many more options.

By the way the steroids my daughter had with her cancer treatment made her feel pretty low so hopefully when he comes off of those he might pick up a bit.

Sending you some ((())) from another Mum

Toni x

MyBoyRio

hi Toni.

Thankyou so much for your massage and your daughter is ok now! 🙏🙏⭐️ you just don’t expect it do you and was obviously not prepared for it, just trying to read about it on the internet and staying positive (😬)

He’s having a good day today and I’m taking him swimming tomorrow.

I’m bit worried about the MTX and it hasn’t kicked in yet.

Really appreciate your message!

Love

Maria x

frogmorton

Maria (@MyBoyRio) you are doing everything you can you really are. A swim should be good. MTX can take up to 12 weeks to take effect and I don't know what dose your boy is on, but probably they started him on a dose which can also be increased if needs be.

It really can be a very effective medication - it started out as a chemotherapy drug - in fact my daughter had it (the irony!) in drip form ( it is bright yellow!) and also injected into her spine as part of her treatment.

An awful lot of people with an inflammatory arthritis find it is enough to keep their disease under control. I really hope it is for your son ((()))

Toni x

annabanana

Hi @MyBoyRio , I'm 19 with rheumatoid arthritis and depression, diagnosed with both at 15 and believe me when I say that you seem to be doing everything right. I understand how frustrating it is to be the only younger person at an arthritis support group, that's partially why I started volunteering with Versus Arthritis.

I'm glad to hear that you two go swimming, swimming is amazing for arthritis as it is good exercise without any strain on the joints.

https://www.versusarthritis.org/news/2022/december/top-tips-for-swimming-with-arthritis/

https://www.versusarthritis.org/news/2021/june/is-swimming-and-exercising-in-water-good-for-people-with-arthritis/

If your son is similar to me then the main advice I can give you is to be there for your son, push him to do things but don't force him - motivate him to overcome challenges. I also started with methotrexate and steroids and I also didn't notice much (any) relief from the tablets, it was only when I began injecting MTX did I get any help from it (however it is important to remember that everyone is different).

I truly hope things improve for your son and if he needs support then Versus Arthritis is always here for that.