How can one know when whatever state of function that they are in is as good as it will get? If I am around 70% functional but with some pain, do I keep trying new meds to get to a higher level of normalcy? I kind of fear pushing for a different med only to wish I would have been content with the last one. And with the long time for things to reveal their effectiveness, it isn’t something easy to experiment with.
What an excellent question! It’s something I’ve struggled with throughout. Out of the five meds I’ve tried only two have really worked. So initially I was perpetually striving. Now I am on one which works for me but I constantly think is this it? As issues continue to arise but also do resolve. And I’m not what I would call ‘flying high’. But I am doing a helluva lot better than being on a med which clearly is doing nothing.
To date I’ve relied on my swollen/tender joint count to assess how I’m doing. That remains pretty good. But it does feel like I’ve reached a plateau which wasn’t the plateau I was expecting to sit on long term. I was expecting more capacity and stamina. Last rheumy appt was in May and given how I presented there was no way any med was going to be changed. But things can be still something of a slog physically which I wasn’t expecting.
So I do think I’m possibly at the ‘good enough’ stage which a bit like you I find fairly disappointing really. And that in turn presents further problems really more of the emotional kind. Having a strident personality which is quite content to keep striving so things get more better - having no goal to strive for is a bit like an own goal as in pointless. I can battle through almost anything on the basis it’s going to get a lot more better. But sitting on this plateau where things are staying much the same is harder, far more disappointing and lacks a purpose to the likes of me anyway.
I’ve yet to accept it I think. I’m still seeing only what I can’t do, rather than what I can. I am working hard on turning that around but…
However perhaps unlike you I know clinically I don’t present bad enough presently to warrant another change of meds under NHS rules.
Thanks for the well thought out response. I know what you mean about the loss of a goal (hope?) to motivate for better than what is. Just when I have settled into thinking, “this as good as it gets”, I am surprised by a few days that are better than the average or a week of dipping well below with a flare. During those annoying flares I want to pursue better than good enough. And then lurking in the background is the aging factor and how that affects PsA. One day at a time, right?
Is 70% function your definition of good?
I’m 60, retired at 53 because of 4 M.I.s. 7 stents, PSa, oesteopenia, and a rash of other stuff. I do everything I have always done, albeit in moderation and only when the temp is below 80 as heat is my enemy. My point is I am 100% functional depending on my level of pain. Flares stop everything, pain is usually a 4 with more than a few spikes off the scale many times a week. Doesn’t pain tolerability have to factor into how you define functionality? I wasn’t satisfied with being unable to find help to control the pain to increase normal function. Went through all the drugs till they stopped being effective. Reduce your pain by any means necessary and you increase functionality. Keep searching. Never be satisfied with ‘good enough’. A week with no pain is the best I’ve done but I’ve only done it twice (in 7 yrs) both in the past 4 months. There are more of them coming because good enough is never good enough.
@Amos, I learned a few years ago that with psoriatic (and rheumatoid too), that I can’t ever get back to 100%. But if my pain is controlled and meds allow me to feel 80% better, it’s worth it.
I’ve tried infusions and biologics, methotrexate and Enbrel, but after 23 years of this cursed disease, I won’t get better. But I CAN cope with the other 20% that sucks.
That’s something I’ve struggled through. Unfortunately to the end of available biologics and DMARDs. I’m currently on a half dose of Sulfasalazine (because I can’t tolerate the lowest usual dose and methotrexate was causing toxicity issues) and Remicade (I can try Tremfya next if need be, but none of the biologics in that class have actually helped so I’m leery of changing to it when the Remicade is at least better than the last one I was on, Xeljanz, just not quite good enough).
I am not at 70% even. Maybe 60%? The involvement in my feet mean I have trouble being active. My hips and SI joints are awful and if I work on a project or spend too much time cleaning house I pay for it and need to use a cane to walk (or like earlier this week, try to avoid walking altogether). I don’t have good pain management I guess, but I don’t respond well to opioids (they tend to amp up my anxiety), so I’m just on 1000mg of naproxen/day.
I’m not sure anything will ever be good enough for me to feel like it’s actually working (the best I did was on Simponi, I actually started running! Lost 30 lbs, was active, I miss it). But at some point I think you sometimes have to take “better than it has been” and just rest there for a bit. I’m hoping that some new drug targeting a different pathway gets through trials so I can try something new soon.
Thanks for your thoughts and encouragement. During a bad flare, everything looks pretty dismal and its easy to lose perspective. Personally, I can handle and deal with a degree of pain and pain induced mobility limitations but the brain fog and fatigue is the hardest. I hate having to be motivated by the toilet to get off the couch. Sometimes it requires way to much thought to get going!
Thanks, I appreciate hearing your story. You are quite young to carry this…I sort of assume, “Oh well, I’ve had 60 good years…” My number one pain management is 1000mg Tylenol with a cup of coffee. Seems to have the least side effects and takes the edge off pretty good. I’ve been on Rinvoq (the replacement for xeljanz) for 5 months and overall better. But I seem to be the only one on this site that is on Rinvoq. It has pretty limited approval but my rheumy described me as having “RA with a Psoriatic Variant”. I don’t have RA but clever wording got me approved for Rinvoq.
Yeah. They’re trialing Rinovoq right now for PsA so it shouldn’t be too long until it’s more widely available to the rest of us.
I don’t think I’ll make it to retirement before I’m disabled or unable to work full time (I’m only 37 now, though I feel older than that), but I’m working on trying to make sure I can keep working as long as possible (just got on a modified WFH schedule as we returned to the office Monday, so I’m home two days a week and in the office the other three, hoping to eventually convince them for more days at home until I’m fully WFH, lol).
I think we all live with this to come degree and I am so glad you posted this. I am just coming out of a 8 week flare and I know how hard that is on our mental health. For me, I am living at 85%. I feel that is pretty good for me. I could try other biologics and meds but I like the ones I am on. I feel peaceful about it. Are there some things I could do without? Yes, but I don’t want to rock the cradle so to speak.
I don’t think I will ever be back at 100% and one day I may come to terms with it, but for TODAY I am doing ok. As long as the ok days out weigh the bad I will call that a win.
Good luck with all of it.
Working from home, which was NOT considered kosher in the 90s-00s, added 5 years to my career and body of work. I had to go on disability in the mid-aughts, but I was able to freelance up til then, and thus kept my pride and dignity intact longer.
The hardest thing about this damn disease, plus rheumatoid arthritis, is that if you are on disability for a while and not WFH, you lose respect from others. It can be subtle or brash, but you start to see people not trust, or even ask for your opinion, advice, etc. Your world can get really small.
Stay as linked to a purpose, and to others, as best you can. Volunteer if you’re able; join a club or turn a hobby into a small, at-home business. It sounds hard, but it’s worth it.