Please Mind the Gap

So you've got your diagnosis. Psoriatic Arthritis. A shock. Or maybe not: perhaps you are relieved that, finally, there is a name for what's been causing you this misery for so long. It wasn't all in your head after all! Many of us have gone through long periods of being medical mysteries, being blown off, or being diagnosed incorrectly. At least with a diagnosis, there is the prospect of moving ahead and getting better. You may be terrified, but you're already in a much better place than you were before!

So now the treatment process begins, and you start looking forward to making some progress and feeling better than you have been for a while. Happy prospect! If only it weren't for what we call "The Gap". One of the difficulties of treating Psoriatic Arthritis is the fact that the medications that are used to treat it work extremely slowly. Side effects, if they are going to happen, start soon enough (of course!) but the first signs of relief from the arthritis medications (the so-called DMARDs such as methotrexate, sulfasalazine, hydroxychloroquine, leflunomide and the likes) will take many weeks before they become apparent.

That puts you in a difficult position: your disease symptoms aren't getting any better, there's no sign of relief, and you may be suffering side effects. Most rheumatologists will re-assess you after about three months. If there's no improvement, it's on to the next medication and several more months of wait-and-see, hoping for success. Eventually, you and your rheumatologist will most likely find the therapy that gives you some relief, but until that happens you're in The Gap. And that's not a nice place to be. (Myself, I spent eighteen months there.) The best case scenario is a gap of about three months: you start the first medication and strike it lucky: the side effects aren't too bad, and after two or three months it's working well for you. But those three months can still feel like a very long time.

It does get better. Really it does. But until that time, you have to play the patient patient. Difficult, for sure, but hang in there! While you're in The Gap is an excellent time to start learning as much about PsA as you can. We're glad you've made it to Ben's Friends, and there is a great deal of information and experience for you here. At the top right is a search bar which you can use to find topics that have been discussed in the past. You could also consider getting the Psoriatic Arthritis book which Seenie recommends under "Book Reviews" (above). The e-book is a bargain, and if you don't have a Kindle, you can get free software for your computer or your tablet that will allow you to be reading it within a few minutes. Being knowledgeable about PsA and its treatment will help you make sound treatment decisions with your doctors, as well as preventing oversights or misunderstandings that could slow down your treatment process.

It's very easy to get discouraged while you're in The Gap. Many of us know only too well the feeling that life will never be the same. That you'll never be able to escape from the pain, or do the things that you used to do. But please don't make any irrevocable decisions yet! This is not the time to sell your motorcycle, or quit your job, even if it feels like you will never be able to do those things comfortably again. With appropriate treatment and lifestyle changes, you may be surprised at how well you feel down the road, and you don't want to regret closing doors or burning bridges while you were struggling in the early stages of treatment.

What to do in the meanwhile? Or what to do while you're waiting to get in to see a rheumatologist? Your medication list may already include an NSAID (non-steroidal anti-inflammatory drug) like diclofenac or celebrex, which can help a lot with your symptoms. But they do not have any effect on the Psoriatic Arthritis disease process. (Symptoms can be controlled but damage may still be happening.) Depending on the severity of your symptoms, and the doctor's personal preferences, you may be offered a steroid like prednisone. Steroids have significant risks and downsides, but in extreme situations they can also be life savers. (A course of prednisone can also be used as a valuable diagnostic tool to see whether your symptoms are coming from inflammation.) Only you and your doctor can decide whether those benefits are worth the risks.

If you are considering complementary therapies (and there's a whole section of this board devoted to them) please do so in careful consultation with your medical team. Of course you want to do everything possible to improve your condition, but be aware that all therapies -- conventional and otherwise -- have risks and possible interactions. And never lose sight of the fact that this disease can cause serious joint damage, sometimes with surprising speed, as some members have, unfortunately, discovered. We have a mantra here: "Fear the disease, not the drugs."

Finally, this is a good time to start evaluating the comfort level that you have with your rheumatologist. Do you feel at ease? Does this professional seem thorough, and take your concerns seriously? When you have questions or when it's clear that you've done your homework, how does he or she respond? When you leave, have your questions been answered and your fears and doubts addressed? If not, you may want to consider taking steps to move to someone who is better at meeting your needs: this is going to be a long relationship, and one which will have an enormous influence on your quality of life.

Welcome to The Gap. Learn all that you can, put major decisions on hold, fear the disease but not the drugs, and lean on us here at LWPsA. Most of all, be kind to yourself.