I’ve always thought of myself as a pessimistic optimist. That is, while acknowledging that things more often go wrong than right, I still stubbornly hope for the best. When it doesn’t happen, I lift my chin and resolutely search out the bright side. I always manage to find one.
As a result, I’ve had a tough time figuring out what to think of my visit to my rheumatologist this last Saturday morning. In a nutshell, what he said was this: “Your RA has become more active. There’s little we can do, but we’ll try. Ditto the bursitis.”
Now, I don’t want to give you the wrong impression. My doctor, who I like very much, was kind and sympathetic. He was, as always, informative. Compassionate. And he was honest, which I appreciate. Still, I couldn’t help but feel like I’d had the wind kicked out of me, even though I knew before I walked into his clinic that my rheuma dragon has fully awakened and is both irritated and ravenous (my elevated sedimentation rate and other indicative blood tests bear that out). Because of the more active RA, the bursitis in my hips is also more painful. I knew that about all my rheumatologist could do was increase the dosage of or change my medications. I knew he didn’t have a magic wand.
Didn’t keep me from hoping he had a secret stash of fairy dust in his pockets, though.
Well, he didn’t have any of that, either. Instead, he increased the dosage of the sulfasalazine I take. He prescribed a couple more steroid tapers for the bursitis, since those had a limited therapeutic effect last time. Since my pain has been elevated along with the inflammation, I mentioned that my old friends tramadol and hydrocodone haven’t been working as well as I’d like, hoping that Dr. McA would have a magic bullet for that, too. Well, no. Instead, he asked if they lessened my pain by at least 30 percent. I told him they did. Just. He smiled and told me gently that a 30 percent improvement is the most they expect from these painkilling medications. “Nothing will relieve all the pain,” he said.
Right. I knew that. I’ve always known that. But those meds used to relieve quite a lot more than 30 percent; in fact, they used to effectively smooth the sharp, jagged edge of the pain down, making it very much easier to bear. But lately they merely blunt it a little.
He renewed my prescriptions for both analgesics, adding enough refills to last until my next appointment. And then we were done. Dr. McA wished me well and moved on to his next patient.
I know I’ve been very lucky, what with my years-long remission and, since it reactivated, with the way my RA has been kept under “control.” While I’ve had some pain since the dragon started stirring again way back in 2005, it hasn’t been too bad. In fact, it’s been fairly easy to be cheerful and, yes, optimistic about it, particularly since there are now so many different, hopeful treatment options for the disease. Many of them didn’t exist when I was first diagnosed in the late 1980s. The medications I was given back then—mostly NSAIDs—did nothing. I suffered awful, frequently disabling pain. The only things that helped were the various narcotic pain relievers, those soft, opiate angels with names like Codeine, Vicodin and Percodan. Knowing that there are now more viable options for effective treatment has been a huge relief.
So today I’m having more and more frequent flares, sessions that feel increasingly as painful and drawn out as those I used to have pre-remission. And now I’m told by my rheumatologist that, basically, I’m just going to have to tough ‘em out, just as I did in the past.
It all leaves me a little breathless. I know I’m just going to have to readjust my thinking and start looking for my silver lining in different places. I’m going to have to resign myself to enduring heavy pain again, and more disability. And I’m going to have to accept that while there are many new medications for RA, they aren’t necessarily magic potions. They’re just chances for relief, and temporary ones at that.
At this moment, the only bright side I can see is that I’m not dead yet. But I’m still an optimistic pessimist. Given a little more time to mull the situation over, I’m sure I’ll come up with something better.
I’m confused about your limited medication choices. I even went back and reread your post. Why isn’t he trying a biological??? Did I miss something?
I’m sorry you are in so much pain. I had a remission similar to yours and when the ra returned the pain took my breath away. I suppose I thought it would never return. I have done pretty well on Humira. If you haven’t discussed biologicals with your doc I think you should. There are so many more options than 20 years ago.
I haven’t been following you all that long and I haven’t read much of your back posts, but it does sound like you’re just on pills, so are Biologics not an option?
Do you work right now? Working when you have a flare is like a special kind of torture.
I think you and I are on the same wavelength today. I left work early- fighting tears because the hips and knees are giving me trouble and the right arm- which is my dominant arm- is flaring hard both with the RA and Fibro. As I was driving home, gritting my teeth and planning to get here and take my “extra” meds (the ones I can up as needed) I kept reminding myself over and over and over “it’s not going to stop the pain, it will just mask it enough to rest and relax”.
It’s a hard realization when that knocks you over the head, the whole, “suck it up and deal with it” thing. Just know you are not alone my friend- and that you have virtual hugs coming from all over.
Hi Wren: have you taken any of the biologics and if not why? They are specifically intended for tough RA cases so not sure why anyone would throw in the towel at this point unless you have been on them unsuccessfully and/or cannot take them. There are so many new medications in the pipeline I am really surprised and frankly would seek a second opinion….Nan
Oh Wren – I’m SO sorry!! 😦 Is the lack of biologics options because of your VA (Is that what I mean?) insurance not covering for them? I hope not; that’s just awful …
I hope biologics are an option. I know the drug companies make it possible over if you do not have insurance.
I hope somehow, someway, relief comes your way.
I’m so sorry your remission has been derailed. I’m implying that I believe it can be put back on track — thinking positive. 🙂 I am certain you are considering all of your pharma options. I think your attitude is to be commended. “Pessimistic optimist” — that is an interesting label. I like it. Here’s another: How about, “Creative Crusader?” You are definitely creative in your adaptability, as well as your outlook; the crusade to hold RA at-bay is a worthy cause. “Back you beast!” you shout, sword in hand as you valiantly go into full battle with the dastardly rheuma dragon. You emerge triumphant.
Sending you well-ness, sprinkled with large quantities of sunshine and a healthy dose of effervescent positivity for good measure.
Even before I read the other comments, I was like: Am I missing something here? Have I forgotten something? I’m pretty sure Wren’s not on biologics….
Do let us know what’s up with that. I live in Canada, but I know from the two biologics that I’ve been on/am on that the companies will pay if I lose my insurance coverage (imminently about to happen!!).
Am hoping, hoping, hoping that is the case for you!!!
Smiles, hugs, and other good things being sent your way!
The other med option questions have been asked. I wait your reply. All I am wishing is that something, somehow and someway comes along for you to make this doable. Maybe a different pain medication? 30 percent is not acceptable in my book… no way. Please come up with a different game plan of some kind and one that maybe includes some of your old pain medications that worked better for you. (((HUGS)))
Here’s a silver lining now: I bet you know a lot more people with chronic illness and disabilities than you did before, who can encourage and give tips on how to live with this sort of thing.
Have you tried negative ion therapy? It has made a world of difference for my grandmother who also suffers from rheumatoid arthritis. She uses a product called SuperBandz. They are silicone bracelets that have a negative ionic charge. She still has good days and bad days but she swears by this band! I hope you are feeling better.