@IWishMyUsernameWasX
Thank you all for sharing your experiences, especially about MTX. I was diagnosed with RA several years ago, and have so far been lucky and have managed to avoid having anything stronger than hydroxychloroquine. I am petrified of going on to the stronger drugs as it feels like I will be banished to a lifetime of medications and on a road to stronger and stronger drugs. My mum also had a very severe reaction to MTX once and was very ill. However, my symptoms are getting worse and I think I need to discuss the possibility of stronger medication at this stage, before any permanent damage is done. I think I just need to gulp and give the rheumatologist a call...
It's not just joint damage that's a risk. It's quite literally up to and including premature death.
My father dropped dead aged 54. Always slim, never smoked, active but not heavy physical job. The cause of death was cardiomyopathy - heart damage due to uncontrolled inflammation (as this was before decent treatments were available).
The risk of heart disease, strokes, abnormal lipids and some types of cancer are vastly increased from having uncontrolled inflammation.
Add into that the increased likelihood of obesity from not being able to exercise and eating easy food because it's too painful to prepare and cook food from scratch, plus metabolic syndrome - and the life expectancy of somebody whose inflammatory processes are not controlled is significantly reduced.
In addition to that, inflammation affects the brain - you don't have to be depressed or have a serious mental health condition to have almost identical symptoms - the difference is that they go without psychiatric medication or therapy - they can just disappear overnight once the inflammation starts decreasing, particularly with steroid pulses, as they have an almost instantaneous effect in some cases.
MY mother's lived longer than my father did, but she's been miserable for over forty years - pretty much my entire life - because she refused even steroids. She's had surgeries on her spine due to it being uncontrolled, had heart attacks, hasn't been able to walk without pain since I was five years old, couldn't use her hands, and was permanently either off her tits on painkillers and sleeping pills or raging because she couldn't get any more painkillers and sleeping pills from the GP. She thinks I'm an imbecile for taking medication - I should have apparently told 'them that you demand better painkillers' instead of taking medication that means I don't need any at all.
They aren't 'stronger drugs' that need to be avoided. They're better, more effective ones, ones that are appropriate for the condition. Yes, they also carry risks and potential side effects, but if you look at it as
Choice #1 - Feel crap, don't have much of a life, struggle with emotions and pain, then keel over aged 55 in front of your teenage son and 11 year old daughter (not me, my half brother and sister) and die in front of them
versus
Choice #2 Feel rough on some (maybe), feel great on others, have a life and maybe, possibly, have a slightly reduced lifespan or need treatment for something aged 68 if one of the rarer side effects come into play but you are constantly monitored for signs of throughout treatment -
Just how attractive does carrying on without the more effective treatment actually sound?
Obviously, everybody gets to make their own decisions, but they do need to be, in my opinion, weighed up against the actual reality of going without treatment/having less effective treatment out of a fear of something they don't quite understand and think they shouldn't really be needing - you don't get offered this stuff for shits and giggles, not at twenty grand a year list price - it's offered because it's, in the opinion of the NHS, worth paying over a year's salary per person to have it, compared to leaving them untreated or ineffectively treated.