Hi all, I wanted to start my introduction by firstly sending a big thanks to the group and all members. Joining this group a couple of weeks ago and reading the amazingly useful information shared so generously, has allowed me to 'stand on the shoulders of giants' and have a clearer view through the foggy countryside that is PsA. My tentative diagnosis by two rheumatologists has been about 8 years in the making. It is tentative because I have never been diagnosed with psoriasis. Although I had a very bad skin condition on my hands for about five years that was diagnosed as dermatitis, which didn't respond to anything to the point where I stopped going to the doctor. It mysteriously disappeared and within months I began to have joint pain and recurrent tendon pain and fatigue. In retrospect my partner and I both suspect it was pustular psoriasis.
For a long time now it has been a challenge to work out when it is more helpful to pay attention to the PsA and when it's more helpful to distract myself. This year it's been hard to distract myself...I have multiple joint involvement with low level to medium chronic pain...fatigue...brain fog etc etc... This year I began DMARDs. Sulfasalazine did not like me at all and we seperated after 3 weeks. Arava and I got off to a rocky start with side effects and I don't have a lot of confidence in the relationship working out as some side effects continue and it is currently only helping my feet. But I have decided to give it 4 months to see if side effects settle and to give it the best commitment I can. Perhaps we will fall for each other after all? Meanwhile I am also considering relocating to somewhere warmer which I wonder might help the PsA and raynauds but I am not sure. I am about to reduce my work hours for a while till I see if Arava settles. I am 47 now and continue to work and parent. I live in Australia and I am soooooo hanging out for summer...even the change of season flare cannot rob me of my hope for the lightness that summer sometimes brings!
I have related to so much of what I have read on this site...the ups, downs, questions, medical challenges and heaps more. Over and over resilience, knowledge and strength, in so many shapes and colours, have come shining through the discussions. I reckon voicing experience is a powerful thing and for me at least helps me to work out how to live with PsA....thanks everyone MacMac
PS I am definitely no techno giant...it has taken me about two weeks to work out I have had my privacy settings set too high to allow me to publish this....very funny....
My relationship with sulfasalzine was as short lived as yours but for me the leflunomide (Arava) worked well .... until it didn't!. If the side effects are a real issue for you I have heard it is worth starting or dropping down to 10mg alternate days, increasing to 10mg every day and then up to 20mg daily or alternating with 10mg every other day ... whatever dose your rheumy wants you on. Might be a discussion point for you.
Thanks for the welcome and information Jules G. I have valued the drugs info on the site as it speaks to the reality of what the meds are like for ys all. It's strange but some of the side effects have lessened over the 10 weeks I have taken 10mg daily (no loading does) such as hair loss and itching and others have got worse such as nausea, dizziness and brain fog. Although bloods are ok my liver is reactive to a lot of things it didn't react to before :-( But nonetheless I going to give it the best shot I can....if the side effects worsen I guess I will change plan :-) Jules G said:
We are delighted to have you here too :-)
My relationship with sulfasalzine was as short lived as yours but for me the leflunomide (Arava) worked well .... until it didn't!. If the side effects are a real issue for you I have heard it is worth starting or dropping down to 10mg alternate days, increasing to 10mg every day and then up to 20mg daily or alternating with 10mg every other day ... whatever dose your rheumy wants you on. Might be a discussion point for you.
I take my meds, do my exercise, eat my greens, and check out what's happening on this site. All part of managing PsA as far as I'm concerned! It's great to hear that you like this community and that it is helping you get your head around PsA.
Just wondering, has methotrexate ever been mentioned? Or is there some reason you can't take it? (Aplogies if you've explained this somewhere and I've missed it). It's just that it is usually the first line of attack ahead of the other DMARDs, though not always. We all respond differently but I've found it the most effective of the DMARDs and a bit easier, for me anyway, than Arava.
Hi Sybil, thumbs up to your management strategy. I was encouraged to take Arava by a locum rheumy when my regular rheumy was on leave. Regular dr wanted me to try methotrexate but the locum suggested arava and I was somewhat seduced. I learnt from this...when I had a consult with a hematologist recently he told me he had very few patients who liked arava while many liked methotrexate. Goes to show different drugs work for different people and it's part of the journey to find the best fit. I was frightened to try methotrexate but not now...
So glad that the site has given you the kind of support and perspective that's typically not available from your physician. Your point about getting invaluable "what it's really like" info from others with the same illness is really important. I just started a new medication and I knew I ran the risk of developing, shall we say, "gastrointestinal complications". And while that side effect was emblazoned all over the packaging there was no accompanying note saying "if this happens to you might we suggest...". So I came here, searched for old threads on the drug and found a perfectly cogent series of comments from people explaining how they coped with the, ahem, gastric distress. I went to the pharmacy and had them check for drug interactions and went home with a cheap and efficacious remedy which allowed me to go out in public again and stand upwind from others!
I wish you continued success with your developing relationship with Arava. As long as you explain to it that you wish to be in an open relationship, I can't imagine that it will mind if you start to look at adding in other drug therapies.
That's interesting. If I'd known back in the dark ages that I tolerate drugs so well I'd have joined the Rolling Stones. Well, I suppose I have had some adverse effects but I don't usually feel bad on them. Except for Arava ... I just didn't feel quite right on that, though admittedly that's quite a minimal side effect. You were seduced by Arava .... I had a little song I'd sing at the beginning, when I still felt scared of Mtx, it went: 'Mtx, Mtx .... Mtx is better than sex'. Perhaps I never was cut out to be a rock star.
MacMac said:
Hi Sybil, thumbs up to your management strategy. I was encouraged to take Arava by a locum rheumy when my regular rheumy was on leave. Regular dr wanted me to try methotrexate but the locum suggested arava and I was somewhat seduced. I learnt from this...when I had a consult with a hematologist recently he told me he had very few patients who liked arava while many liked methotrexate. Goes to show different drugs work for different people and it's part of the journey to find the best fit. I was frightened to try methotrexate but not now...
Yes ...our agreement definitely states an open relationship :-) thanks for the welcome and ditto to the knowledge inthis group helping people live with PsA. Sunny spring day here so I am off for a morning walk once it gets warmer. janeatiu said:
Hey MacMac!
So glad that the site has given you the kind of support and perspective that's typically not available from your physician. Your point about getting invaluable "what it's really like" info from others with the same illness is really important. I just started a new medication and I knew I ran the risk of developing, shall we say, "gastrointestinal complications". And while that side effect was emblazoned all over the packaging there was no accompanying note saying "if this happens to you might we suggest...". So I came here, searched for old threads on the drug and found a perfectly cogent series of comments from people explaining how they coped with the, ahem, gastric distress. I went to the pharmacy and had them check for drug interactions and went home with a cheap and efficacious remedy which allowed me to go out in public again and stand upwind from others!
I wish you continued success with your developing relationship with Arava. As long as you explain to it that you wish to be in an open relationship, I can't imagine that it will mind if you start to look at adding in other drug therapies.