Hi, I find myself in a bit of a strange position........The backgound is that in Dec last year I was diagnosed with PsA. At the time of diagnosis I had swollen hot joints, stiffness, pain, etc, my knee was drained, I had steroid injections to multiple joints and commensed MTX. I had to come off some months later due to intractable vomiting and was subsequently started on Leflunomide. A short time later that had to be ceased as my liver went bannanas. So, now Im waiting to see my rheumy to decide where to next but a funny thing seems to have happened, the meds did control my PsA symptoms and it seems now Im on no meds at all the pain,etc seems to certainly be getting no worse and it is so much better than when I was first diagnosed. So I quess what Im asking is..... Should I try without meds for now if Im not having too many symptoms or am I risking my long term outcome? I hate taking meds esp these ones, they almost make me feel worse than the illness. I would really value any input. Cheers.
Its a tough one Sophie but I would have a good open discussion with your rheumatologist, then make up your mind then 
at the end of the day you have to do what’s best for you x
I agree with Louise. But another thing. . . The leflunomide stays in your system for quite some time. Even though you're not taking it anymore, unless you did a wash-out, it's still acting in your system for a few months.
It sounds like you were in pretty rough shape when you were diagnosed. It's fully possible that you are experiencing remission, even though the meds wreaked havoc with your system. Definitely talk to your rheumy.
Thanks guys, I'm so confused really I'm so new to this. If by some extreme good fortune I've gone into remission do you know wether you can be off meds? I also forgot that the Leflunomide would hang around for so long, it'll be interesting to see how I go over the next few weeks. Its a bit tough getting your head around this illness at times.
I wish I could tell you Sophie. For some people, remission without meds is a possibility. For others, remission may only exist ON meds. Definitely bring this question up with your rheumy.
One of the reasons we take medication is to stop damage or further damage to our joints that PSA can cause. What if the symptoms do return and you don't have any medication? Will you have to wait for a new Rhuem appointment? PSA is not treated, according to when you only have symptoms. I have not heard of anyone to be symptom free in this short amount of time with PSA. There is no known cure for it. RA is more likely to go into remission but I am not a Rheum and it is very important that you discuss this with your Rheum as everyone is so different and your situation is not the usual. I hope you continue to stay symptom free
PAIN has little to do with disease....... Its level can change up or down for little or no reason. Even though inflammation is frequently the cause of pain with PsA, its not the only reason. Also there are many places that even inflammed won't cause pain including some of your organs and glands. (Rare but not unheard of) Worth a very LONG discussion with your doc. I don't mean to sound discouraging but if you do have PsA it will be back and usually with a venegence. If staying on meds can prevent or mitigate that go for it.......
Hi, thanks for the replies. Im not actually symptom free, i have pain and stiffness and that stuff, its my joints that arent hot and swollen etc. I quess that because the meds are making me really quite unwell it affects my quality of life more than the arthritis symptoms atm. So Id rather not take them but I also don't want to end up worse off in the long run. I have a feeling that Im going to end up better off taking them. So maybe I just have to 'suck it up'!
Hey Sophie. I am sorry you had to find us. I think you will find that not all of us have the same symptoms. I am one of those people. While my hands are so totally deformed, they don't hurt all of the time nor does my left foot or my back.. I have found that the meds have helped me way more than I would have ever expected. Each of us have different problems with this disease and different symptoms and reactions to our meds, we just have to learn how to deal with them. My advise is to take your meds, learn how you react to them and don't let anyone tell you how you are supposed to feel - we are all different!
Sorry Sophie, you did say not too many symptoms and not symptom free, my mistake.
Just thought I would mention that it does take between six and twelve weeks for Mtx and Leflunomide to start working.
I had to start these meds on low doses and gradually increased them gradually to lessen the side effects whilst my body got use to them. I also take .5mg of Folic Acid which also helps lessen the side effects.
I have had to stop taking two of my meds because of stomach and reflux problems but this was after a about a year. I also took another med to try and protect my stomach but it wasn't enough. I have no idea how this is going to impact on me as it is still too soon to know.
In Qld Australia I had to fail three treatments before I was approved to go on to a Biologic called Enbrel and I am still on it and no side effects, worked well in the beginning and now not working as well as it should but generally it does seem to work well for many. So there are better options available, it is just the time it takes to go through the process before you qualify.
Getting these meds right is still so much a trial and error regime and even when you think you have it right it can all go a miss.
I hope you work out what will work best for you.
Hi guys,thanks for your input. I know the meds can take time to work, they do work on my PsA but they make me so unwell. They make me very sick and with both MTX and LEF I've had to cease due to blood test abnormalities, mostly I believe but not just, liver function. I too live in AUS, in perth, my rheumy has said prob end up on biologics sooner rather than later but has to follow the protocol. I think I so badly wish this werent happening that with the very acute symptoms improved,i think im almost attempting a little denial around this issue!