Firstly the good news - its seems like the inflammation is under control, i’ve no real swelling in my joints and my CRP is normal, in fact the rheumatologist feels my PsA is under control.
However, i’m still feeling quite a lot of pain and fatigue. Pain in my shoulders, elbow, arms, hips, knees, feet (but no swelling), in fact if i apply pressure to certain parts of my body the pain is pretty intense. I’m still taking tramadol because i need it, although i think the consultant thinks i should be able to cut back on this. i also still have quite a bit of fatigue and if i’m not very careful about limiting what i do then i get exhausted quickly. I also get tingling/pins and needle sensations in my hands quite regularly.
My question is whether i should still be feeling pain and fatigue if the disease is under control or will i always just to have to live with this? The first consultant always made me feel that with the right treatment i should get back to normal. Another consultant i saw just once gave me the impression that all the drugs are designed to get the inflammation under control but i would likely always have pain, fatigue and flares.
I don’t know what to do? I’m not sure whether to be pleased its under control and accept the pain/fatigue as part of life now or if i should keep pushing for different treatments?
HimChris, many of us have normal CRP and little swelling from day one, what mess are you taking that your Rheumy thinks your a PSA is under control?
i’m on Arcadia 90mg/day and i have been on methotrexate for most of the last 15 months but had to stop at the beginning of january due to a liver reaction. I’ve also had steroid injections. My CRP is normal, i’ve no visible swollen joints and the last ultrascan i had in early december showed very little swelling in my hands.
Hah, I just realised my iPad autocorrected to ‘mess’, instead of meds!
As you’ve obviously realised from the subject of your discussion, everyone has a different experience. Mine on MTX and anti-inflammatories wasn’t dissimilar to yours - I made a choice to pursue other PSA meds despite not having the high CRP or obvious swelling, but pain and fatigue that led me to not be able to function at even a basic level.
Others I’ve read here and on RA sites in a similar situation either were diagnosed with, or saw themselves that Fibro was more fitting to their symptoms, and some of them were able to stabilise their condition much better too.
Even though I describe myself as a whisker from remission, I still came home tonight, took short term anti-inflammatories, put an ice pack on the floor and lay down on that to watch tv with my daughter, made spaghetti on toast for tea, and try to schedule 8-10 hours of sleep a day. (I’m in a flare for my current condition). It’s most likely though, that will go on for days, not weeks, or months.
Whilst that isn’t perfect, it’s certainly a lot better than my previous functionality.
Either way, a lot of it is really up to you - if your functionality and joy in life is not at an acceptable level, than absolutely seek more.
thanks Jen75. what our PSA meds did you try? I’ve been on sulfasalazine but couldn’t tolerate it (dizziness, faint, sick etc). I don’t quite qualify for Biologics so I think my main remaining choice is Lefluonomide.
I do wonder if I’ve got fibromyalgia as well but the consultant hasn’t said anything or suggested this.
Hi Pilgrimchris.
Although everyone’s experience is different, I think there’s always something left over even when PsA is well-controlled. I guess the question is how much pain and fatigue remains and whether it really makes any great difference day to day knowing that your disease is under control if you’re struggling greatly with pain and fatigue. I suppose I can answer that one, if the disease is indeed well-controlled then at least the risk of joint damage is minimised and that is quite something.
Our side of the bargain - keeping moving, gentle or even not so gentle exercise, weight control, good diet - do seem to contribute greatly to reducing pain and fatigue. I find that some activity does reduce pain for me once it has started, but I think that regularly putting muscles, tendons and joints to work can prevent pain starting in the first place too, or at least lessen it.
I’m in the UK too and I realise that without swelling it is difficult to qualify for biologics. But there can be a bit of wriggle room. You only ‘need’ a couple of swollen joints and the swelling does not need to be huge. I think in your shoes I’d do an honest appraisal of whether there was more I could personally do to combat the disease and thereafter really lay it on the line with the consultant, emphasising the way that pain and fatigue affect daily life, work etc. Pain is an amorphous term compared to describing tasks taking twice as long as they should, or not being possible at all, or bosses issuing warnings or whatever.
I notice that you live within striking distance of a centre of excellence for PsA … could be something to consider.
Hi Chris, sorry it took me a while to get back to you - to be honest, I’d echo Sybil. I pretty much went through the same process (tried sulfasalazine and plaquenil with the mtx, even low dose prednisone, ‘shudder’).
Tried as many lifestyle adjustments as I could - but when I found my functionality still wasn’t ok, told the Rheumy that if I kept going the same way, I would either quit or be fired, and a lot of people were relying on me (including my then 3yo daughter - which was, even in hindsight, an accurate assessment of the situation).
Despite not exactly meeting the criteria in Aus (which there are many), we found our way through and I first tried Enbrel. It was a great success for my joints, fatigue, and brain fog (including depression), but I moved to Humira because I have some inflammatory bowel problems as well that exacerbated, not because of Enbrel, but because the Enbrel was so good, of course I came off the steroids and this caused a bowel rebound flare.
Humira and I have been very happy for nearly 4 years now 
Hi PilgrimChris. A perfect world would be 100% relief from our symptoms and the damage PsA has caused us, but unfortunately I’m afraid it’s not a perfect world. 