What a great idea for a thread. Such good questions and ones that we have all struggled with. I’ll take a bash from my own experiences but also from some of the collective wisdom of the group.
Answer to all these questions is, of course, a big old “it depends”. Our individual experiences are varied based on many factors: the progression of your disease; how long you’ve been un-diagnosed and/or untreated; how well you do/don’t tolerate certain medications; how realistic it is for you to live stress-free and follow every last piece of medical advice, including eating right and resting enough; whether you have comorbidities which can really complicate things. So that’s the disclaimer answer…here’s my own POV.
Expectations: you have a chronic, progressive, inflammatory disease. Without treatment things will most likely get worse. You can expect your diagnosis to remain the same and for your symptoms to change. You can also expect your baseline of “normal” to shift like desert sands.
Improvements: if you’re on a disease modifying anti-rheumatic medication you can expect some abatement of your symptoms. How much and for how long varies by person and by drug treatment. Biologic medications tend to offer the most significant benefits, but older DMARDS (I’m looking at you, MTX, sulfa, leflunomide, etc.) can work really well for people, too.
How much improvement you will see depends on all the factors mentioned in the disclaimer and also at what point in time you set your baseline or benchmark. It is probably true that you’ll never get back 100% to your pre-PSA self. But the right medicines can get you very close. I was back to 90% on Enbrel. Until I wasn’t. Which bring us to flares and drug efficacy…but I’m skipping ahead.
Pain and fatigue: Inflammation is the cause of both. Joint damage can also be a big factor in pain, as it, too, is caused by inflammation (mostly). So getting rid of the inflammation is huge and then arresting the progress of the disease is essential. Many of us take anti-inflammatory drugs along with DMARDs to help lessen inflammation that the DMARD or biologic isn’t fully treating. I used to think anti-inflammatory meds were to be taken as needed (you know, you take a couple ibuprofen after you overdid it weeding the flower beds) but in the case of our disease consistent anti-inflammatory intervention can be helpful for some (I’m one). And for some, bursts of prednisone are prescribed (I’m one). But this is not a common practice across practitioners and there’s little consistency across countries.
Fatigue is usually evidence that your disease is going a little bonkers (untreated). Again, prednisone often gives an immediate energy boost to help with fatigue but that’s just putting lipstick on the psoriatic arthritis pig, so to speak. When your inflammation is slowed by a good treatment protocol then the swelling goes down, and the fatigue abates. But when you’re face-planting into your work computer keyboard at 3pm, knowing that you’re shattered because of your unchecked inflammation is of little consequence. There’s no quick fix for the fatigue. Aim to curb the inflammation and the fatigue will diminish, too.
I am not satisfied unless all visible inflamation is gone and the fatigue has gone away, too. I’m not so concerned with the pain, not because it isn’t there, but because I find it an unreliable indicator of my disease.
Flares: Yes. They happen. Over time you will learn to know what can bring them on–overdoing it at work, taking on too much at home, getting inadequate rest, a change in the weather, or–and this is probably the most common cause and should probably be avoided–visiting the in-laws. Sometimes they just happen. Even on a successful drug protocol there will inevitably be things that cause your internal workings to go a bit wonky. The drugs we take are working hard on our behalf but they also make our bodies work hard, too, to flush out all the “stuff” (it’s a technical term) that is the byproduct of fighting the inflammation. So if you don’t feel well, aren’t drinking enough water, or aren’t eating well to support your body, you might inadvertently be heading yourself towards the pointy end of a flare.
A flare will typically have an acute onset. Failure of a drug treatment can be acute but it is more likely to be a very slow decline. So slow that you wonder repeatedly if you might not, actually, be making it up. Once you’ve gone several weeks wondering if you might be feeling a little worse, and a little worse, and then, a little worse still, you talk to your doctor and you frankly assess how well you are able to do all the things your physician assesses (dress, tie shoes, walk 1 mile, exercise, function at work, etc.). When you see those scores declining over time then it is probably time to look at the medicine. And by time I do mean over months, not days or even weeks.
And I say months because I’m someone for whom winter is a bear. A major PITA (pain in the …). I have the hardest time getting through the winter unscathed even on a terrific drug regimen. So I wouldn’t ever make a determination that my drugs aren’t working in January or February because those are just plain horrible months for me. But come April when I usually feel great, if I’m still shuffling around not able to be active or get out of bed easily, then that would be the time when I would start asking the tough questions about my treatment.
Alternative solutions: this is a tricky one. I would say if you have done everything, and I mean EVERYTHING, to take care of the conventional approach to treating your systemic disease, only then would I suggest looking at dietary restrictions or supplements or seaweed wraps, or solo hikes in the tundra, or whatever else you’ve been told will help you. But any and all of these supplemental supportive therapies MUST MUST MUST be entered into in consultation with your physician.
Our good friend and moderator @tntlamb has offered some great posts lately about why certain foods are inflammatory and others can be helpful to us and a low-carb approach has worked well for him. I tried to be gluten free for months and hated my life! Some people use turmeric, others find it does nothing. Be very aware that some seemingly benign supplements can be anything but and can have profound interactions with the DMARD and biologic medications that we take. So consult your doctor.
I had received acupuncture for a couple of things way before my diagnosis and had tremendous success. But when I went to see my practitioner after being diagnosed and relatively untreated, there was no magical outcome after many months of appointments. But I’m a big fan of moist heat for treating my disease so I’m fortunate to now have a hot tub in my back yard which has eased my suffering in the winter months. I’d consider that an alternative therapy and way easier than solo trekking in the Alps!
Hope this is a helpful start. and I look forward to seeing others chime in.
