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Arava, Carla Kienast, Enbrel, Humira, Medical, rheumatoid arthritis, Simponi
Pretend you’re a doctor. (Let’s face it, many of us — with the help of the Internet — have tried diagnosing our own symptoms, so pretending you’re a doctor isn’t much of a stretch.)
Let’s say one of your patients has been diagnosed with a disease. However, the lab tests that confirm and monitor the disease come back normal and the drugs used to treat the disease aren’t very effective.
You might wonder if you have the right diagnosis, wouldn’t you?
Okay, I’m not saying I don’t have RA, as there are multitudes of variations of the disease. But when the MRI on my knee shows severe inflammation and the X-Ray on my shoulder shows significant arthritic changes, and my labs come back clean, it does make you wonder. Add to this the increased joint pain and flares, and it raises the question of whether my drug cocktail is working.
I don’t know. I’m just really discouraged right now with all of this. I’d love to wake up some morning and discover that instead of RA I have some other something that has a clear treatment path — because this one has ceased to be effective.
I’ve been on MTX, Humira, Simponi, and now Enbrel plus Arava. I’m not sure what else there is to try. I have horrible veins and a strong vasal-vagal reflex, so I’m a poor candidate for infusion drugs.
But being sero-negative, I don’t have the luxury of lab results pointing to a clear diagnosis. Therefore, the diagnosis, and the treatment plan, has been based on deduction from symptoms. I know a lot of medicine is practiced that way — if it walks like a duck and quacks like a duck, then it’s probably a duck. It could be a mallard, a wood duck, a Long Island or even a Peking, but it’s still a duck. But then there’s always the tale of the ugly duckling that turned out to be something different after all. I don’t know what else I could have. I have played doctor and the self-diagnosis game, and I come up with the same results that my doctors do. It’s very frustrating.
And I guess really don’t doubt that I have RA, it’s more wishful thinking that I might have some magical something else (hopefully that could be cured by six months on the beach in the Caribbean)…
My rheumatologist appointment is day after tomorrow, so we’ll see what she says.
Thanks for checking in.
Hi Carla,
I too am Seronegative RA, diagnosed a little over a year ago. I think it is more often than not that chronically ill patients wonder if they were misdiagnosed, wondering if it’s an easier to solve problem.
I am so sorry that you are having issues with finding a regimen that works better for you.
I wish you well!
This is indeed a very frustrating disease, given the many variations it chooses to display among us. I do understand your aggravation, as I’ve been there myself (and revisit “there” every now and then, too).
I’m glad you’re seeing your rheumatologist soon. Perhaps he (she?) can clarify the diagnosis for you and pull yet another “magic miracle” drug out of a hat. In the meantime, I’m sending comfort and peace your way.
That dang two steps forward and then three back! (((HUGS))) This drat disease can be soooo frustrating at times. I can only hope that you find the right med combo to tackle your ra and get on the road to improvement. And yes, I too would just love to find out I have something I could cure with a vacation. Now couldn’t we bottle that and make a fortune?