Joint Damage - How long does it take

Lou001

I was diagnosed with Psoriatic Arthritis 3 years ago, upon diagnosis I had X-rays / MRI's which showed no joint damage.
I was very reluctant, and still am, to take medication, however my joints have gotten so much worse over the past year and what started out at a swollen knee and toe has now manifested into a body full of swollen painful joints.

I have got sulfasalazine to take but Im very scared to take them. I have regualr appointments with my the rehumatology nurse but I haven't seen the actual reumatologist for a while now and haven't discussed how much worse, and wide spread my PSA is - my questions are;

1. How long can it take before the joint is damaged? - My nurse tells me that a lot of the pain I have is in tendon areas so suspects that the inflammation is around my tendons, but how do they know this without xrays?

2. Does anyone here take / has taken sulfasalazine? How did you get on with them?


Many Thanks for reading

dreamdaisy

Hello, I didn't have any meds for the first five years of my PsA, simply because it was not recognised that I had a form of inflammatory arthritis. The net result now, eighteen years on, is that I have both PsA and OA in many useful joints. I am sure that if I had received the meds earlier I wouldn't be in this pickle.

I have been on sulph for thirteen years, it helps my skin but does little for the arthritis. I also take injected meth and humira, again both do little for the PsA because the damage is done and they don't affect OA. I have had a lifetime of taking medical drugs and think nothing of it: it's the quality of life I can have now, and the chance to make the future slightly more tolerable, that counts. I see patients in rheumatology striding around, walking with ease, and envy them. They have what I have lost. DD

stickywicket

How long can it take before joint damage? It's the old answer, I'm afraid ie how long is a piece of string? We're all different. There is no one-size-fits-all schedule. All we do know is that, unchecked, the disease spreads and damages more. As someone for whom DMARDS weren't available in my early years of RA, I just wish they had been. I also wish people worried as much about the unchecked disease as they do about the meds designed to hold it back.Potential side-effects are just that – potential. There's no guarantee they will happen and, for most, they don't.

If you click on the little blue button above that says 'search' and then enter 'sulphasalazine' you'll find lots of old threads on it. Good luck.

theresak

Hi,

I don't think any of us particularly like taking drugs, but for me it was a no-brainer - I wanted to regain some quality of life, some mobility, some independence, and I wanted to be able to pick up my little grandsons.

Not everyone gets side effects - I got on quite well with sulphasalazine, but unfortunately it didn't keep the RA in check, so I moved on to other meds. I count myself fortunate that there are now a number of drug options available, and I have a good rheumy team in whom I trust.

Good luck, and keep us posted.

Lou001

Thanks all, I have an anxiety disorder which makes it very hard for me to take medication. It isn't a case of not wanting to take them, i'm just extremely scared and have convinced myself I will have every side effect listed.
I'm currently seeing a cognitive behavioral therapist and she is helping me to overcome this fear.

I really hope I have the courage to take them soon as my joints really aren't getting any better.

dreamdaisy

I have a friend who's PsA is controlled by four sulph tablets per day. He is still mobile, in full-time work and has no trouble with the meds whatsoever. He began it as soon as he was diagnosed - this was around six years ago and his disease is held in check for the time being.

Better is not an option for us auto-immuners - once the damage is there it's there and cannot be undone, as I know to my physical cost. It is your choice about whether to take the meds of not but if you don't I suspect your rheumatology unit will discharge you for refusing treatment and, as Sticky said, the effects of an untreated auto-immune are far more scary than any side effects: side effects are temporary and can be ameliorated: damage is permanent and cannot. I suspect you are far younger than me so it's doubly offensive that PsA has moved in. Arthritis respects no-one: the youngest person I've come across on here was eighteen months old and on injected meth. DD

theresak

Hi Lou,

I hope the CBT helps you to overcome your fears - do keep posting and let us know how you go on.

Tezz x

Lou001

Thanks all.

I was at the hospital today as they have given me a steroid injection to help the pain.

The rheumatologist & the nurses have all been very supportive. I'm not refusing treatment, I have the tablets, I'm just incredibly anxious to take them. I too hope CBT helps me to over come my fear.

The nurse today reassured me that they will be monitoring me closely and if I have any problems on them I can stop.

Now, to get started..

m4r14j

Hi Lou,

I would recommend taking the tablets... I don't have an anxiety problem like you but i do recognise i am just like you in jumping to the worst conclusions and getting myself worked up about things!

maybe we can both help each other out? I was offered the steroid injections and refused that because i was scarred of all the horror stories from use of that! so you can reassure me on that one?

I can reassure you that sulfasalazine is really not that bad, from my research it's the most widely tolerated and while i do have a few side effects from it they are very mild and not worth worrying about. I started it 4 months ago myself and actually it's not doing really anything so i'm worried now about more harmful drugs they will put me on next! or the damage my continued inflammations are causing far more than side effects from sulfasalazine.

virtually everyone gets very dark or orange wee, my mouth is a bit dry and i need to drink more and my taste buds are a bit whack - i keep thinking food is really bland but others tell me its not :roll: It took me longer to get to full dose - your supposed to increase up a tablet each week until you get to 4 a day - i spent 6 weeks doing this as it took some time to get used. mostly it just made me feel sick or hungry i couldn't even tell which in those first weeks - it was like a hollow feeling and a gurgling stomach so i ate lots trying to figure out if it made me less queasy or not. i also used to get a bit dizzy. but really that was it and those dizzy sick feelings went away after 7-8 weeks so its not that big a deal.

Of course no one can tell you how YOU will react to it - but if you start taking it don't rush to up your dose and stick to their schedule if you don't feel good - do what makes life easier for you as you live in YOUR body not the doctors and if it really doesn't agree with you just stop taking it - but you might as well give it a go and give it a fair try if you don't have serious side effects what have you really got to loose - nothing - but you do have lots to gain if it works.