Recent diagnosis

Hi Sam I wasnt as young as you, in my 30s. I was in the same position, not able to do much, struggling to get out of bed and feeling useless. Having tried the tablets to no avail I was finally given Humira. This worked wonders and I was able to live normally and do everything I had been able to do before.. The patent expired for Humira and a 'Bio similar' was created for the NHS (Imraldi). Having been moved to this (cost saving for the NHS) I noticed a gradual decline with my symptoms and flare ups becoming more common. I had a battle with the Rheumatologist but eventually - around christmas time - was moved to another medication (bimzelx) and so far feel this is working much better for me. I think its relatively new to the NHS.. Essentially the NHS will try all of the available cheaper treatments, if you feel somthing really is not working for you tell them and fight for a better drug. The great news is the treatments are out there and do work, and the fact you've been diagnosed at a younger age is probably in your favor and will allow you to control it and keep it at bay allowing you to fulfil you life. Don't give up hope, I know it feels there is no end in sight and you resign yourself to it but it will get better! Gary

Hi Sam, I was 29yrs old when I was diagnosed with severely aggressive psoriatic arthritis I'm now 52 and my life was literally turned upside down. All I can say is never give up hope yes it is painful, frustrating, depressing and every other thing you can think of, but mentally you have to be strong as this disease will test you in ways you never imagined. I was a very fit, healthy and active young man and to have that literally taken away from you feels like your life is over, but never give up I consider myself to be very fortunate as I say mine is very aggressive in all my joints and it is extremely painful at times but that's it, it's just pain it won't kill you, you go to bed at night and you'll wake up in the morning yeah it may be slow and painful at first but once your meds kick in things get easier there are lots of people dealing with far far worse and they might not wake up in the morning. My consultant and team of specialist nurses are amazing and have tried me on every drug there is out there over the years to try and calm this disease down I'm currently taking Tsekucinimab which has brought my levels down to my lowest but they are still quite high and the disease is very active, I've had both hips replaced, my right knee, my left wrist fused, my right wrist replaced and most recently my right ankle all pinned and fused but I'm still here. You will need to make changes, to your lifestyle, your diet amongst other things you will have to learn to balance this disease within your life which won't be easy but do not give up or hide away that's not what we do we adapt, we overcome, you will need friends and family more than ever so don't push them away or keep things from them tell them everything help them understand this terrible disease so they can help you as you will need them, as Gary says keep your Doctor/Consultant/Specialist Nurse Team informed about yourself and how your feeling no matter how small or trivial you think it may be they're all there to help, if something isn't working tell them, if it is tell them but don't over do things on the good days as this will just make the bad days worse, you will learn to balance this as part of your daily life but most importantly you will need support I'm very fortunate to have an amazing support circle of fiends and family and my partner is truly amazing and I simply couldn't get through a day without her. Hopefully you have/or will have the same support but if not you're not alone there are many people and services out there to help and if it's just a bad day there are always forums like this one where you can vent your frustration and people like myself and Gary above will help, listen, give advice just stay positive yeah your life is gonna change a lot but as I said earlier it isn't gonna kill you, your young and still have a long life to live you'll just need to make a few changes/sacrifices along the way that's all. Stay positive, stay strong and keep the communication with everyone that's most important as doing it on your own will be nearly impossible hopefully you'll get on a treatment soon that will alleviate your symptoms and things will improve for you take care Norman

Thanks Gary and Norman, your responses are really helpful. I’ve been trying to keep a smile on, but it’s been challenging, especially when watching my mates being able to go out, play football etc and that’s just not possible for me right now. Hopefully once the next stages of treatment start, it’ll get easier and it’ll be something in the background, so keeping positive and fingers crossed for that!

i was told i had it at 21yrs old after a number of treatments on the n.h.s including sunbed ultra violet, injections trials of new drugs ect,i learnt to live with it,that was in the 70s now the n.h.s has put alot of none life threatening ilnesses on the back burner,getting any treatment is a minefield,after 9 yrs on a waiting list ive got a appointment feb 2025 too late now for me but ill go lucky i had a decent gp who kept me ticking over drugs ect,n.h.s seem to now just offer the physio roundabout route alot of people out there will understand this term good luck hope all goes well but if you stop you drop !