First, thank you, everyone. It’s so comforting to have such kind, concerned and empathetic friends out there. Your comments make me feel hugged and cared for.
The one thing you can always be sure rheumatoid arthritis will do is change.
When I was diagnosed 24 years ago, I had severe, almost daily and frequently disabling flares in my hands, my feet, and in the large joints all over my body. After about 10 years of this I went into a near-complete, drug-free remission. Why? Your guess is as good as mine.
It lasted roughly six years. I was able to go fishing, hiking and even backpacking in the high Sierras with my family, and to do other things in my work that required a level of physical fitness I simply don’t have anymore. Of course, the remission didn’t last. Rheumatoid arthritis never really goes away. In early 2005 I developed a couple of large, firm, mostly painless lumps over the bones of my right wrist. My GP sent me to an orthopedic surgeon, who identified the lumps as a manifestation of my RA. They were formations of hardened excess synovial matter that had seeped out from between the joints and could, he told me, eventually impair the use of my hand. He recommended surgery, and I had them removed. My wrist healed well and with a full range of motion.
In 2008 I started having occasional low-level pain and flares in both hands and wrists. They slowly got more frequent and grew worse. It worried me enough to seek further medical care, which I was lucky enough to be able to get through the Veteran’s Administration. My new VA rheumatologist started me on sulfasalazine and methotrexate, but the MTX made me feel so awful he switched me to Arava. That combo worked pretty well until a year ago, when the pain in my hands started ramping up. My doctor added plaquenil to my DMARD cocktail last fall, hoping to send the old dragon back into his cave.
It hasn’t worked; in fact, my symptoms have slowly gotten worse. When I saw him this last Saturday morning, he decided to increase the dosage of the sulfasalazine. We’ll give it three months to work, and if there’s no change or I get worse, we’ll look at other options.
Those do include biologics. My rheumatologist told me several visits back that the VA has Humira in its formulary, and that it’s often very effective. At the time, however, he didn’t want to try it yet, citing my relatively moderate symptoms and the fact that the DMARD cocktail I’m on was keeping my RA reasonably “under control.” (I put quotation marks around the words ‘under control’ because what we who have the disease consider ‘under control’ vs. the doctor’s definition are often two very different things.) He said that as effective as the biologics can be, they’re also dangerous; they can make a person terribly vulnerable to serious infections and other scary, even deadly, side effects. I can wait.
As for the narcotic pain medications, the trouble is that I’ve taken them off and on for so many years that I’ve developed a tolerance for them. They’ll probably work better at higher doses than I’m taking right now, but that will only increase my tolerance level. Eventually, the dosage can’t be increased any further without doing me more harm than good. I’ve long been afraid this might happen someday.
I understand that there are narcotic pain relief patches, etc. available, but so far my rheumatologist has not offered them. Frankly, I’d rather leave such measures for if and when my flares get really, really bad again. For now, I can manage with meds that simply blunt the pain. I’ve just got to stiffen my spine and re-learn to live in spite of it.
I’ll also keep working on mentally preparing myself for many more years of battle with my old enemy the rheuma dragon. But at the moment, I admit it’s tough. I’ve gotten too used to living either pain-free or with more easily bearable levels of pain than I’m having now. Even as I feel the joints in my hands growing hot, swollen, stiff and more and more painful, I don’t want to believe it. As the small joints in my feet twinge and poke inside my skin, I don’t want to believe it. When I find myself suddenly exhausted after just ten minutes in the grocery store, I don’t want to believe it. I don’t want to believe that my RA is becoming malicious all over again.
But I have to, don’t I. So I’ll fight. Don’t worry. And I’ll find my smile again pretty soon.
Wren: You’ve been a source of inspiration to so many of us, it’s tough to hear you battling the dragon again. Take heart. The fact that your doctor is trying new things is good. And if you do move to a biologic (I’ve been on Humira, Simponi, and now Enbrel) know that many, many of us are able to live productive lives because of them. There is a risk, but there is also a reward. Sending you hugs.
I’m rooting for you. =)
I wish you didn’t have to fight, Wren, but since you do, I know you’ll fight intelligently and with determination. Looking into an uncertain future with RA is hard, but I think it’s important – I’m trying to make myself do it, too. I’m thinking of you.
Wren, you should not have to handle so much pain and don’t give up on your doctors. One thing I have found out for myself is that I played brave way too long – not even the nicest doctor is sensitive enough to guess that things are tougher than we wish to show.
Humira was on the cards for me at one stage as the first couple of weeks with MTX were tough going but eventually I was able to tolerate MTX well enough. It may come up again if and when MTX stops working which I have been told could well happen after time.
But I know several people on Humira (usually they get it IV every fortnight) and they are all happy with it. Obviously, side effects have to be monitored closely but that is what modern medicine is good at and a simple and regular lab test is usually enough.
I had a hard time with MTX at first, mostly nausea and cramps, but there are a few procedures to watch (injections after dinner, maxolon againts nausea, coffee against headache) and patience patience patience. And no big plans for the 24 hrs after the injection.
MTX as well as Humira don’t work straight away, I was told to expect improvements after about 12 weeks – it took 16 in my case. But no regrets.
Don’t give in.
Halt die Ohren steif, gelle! I wish I could give you some solid, helpful advice, meine liebe Zaunkönigen. I cannot. But I think of you out there to the west, and I send little “fighto” “fighto” thoughts (as they used to say in Japan). Whenever the going got tough, my Japanese friends would look me in the eye, hold my hands, and say, “Fighto! Fighto!” It made me smile every time.
First things first, you are hugged and cared for. Living with RA has been a constant learning experience so far (8 years). It is always a scary time when considering changing drugs. Hang tough my friend, times will get better and you will find your smile again. Trust me.
I missed this one! My email notification of your post didn’t come through. So sorry you’re having such a rotten time (although glad things are now slightly better, having read more recent posts before I found this) but VERY glad that biologic are an option for the future. I know they’re not a panacea and they have problems, but it’s good to know they’re an option in the dragon-fighting arsenal. As to ‘what we who have the disease consider ‘under control’ vs. the doctor’s definition are often two very different things’, here here!!!!!
p.s. Love the kadinsky and the new-look blog!