The last several of my rheumatologist appointments have mainly been to discuss what’s next for me in terms of a treatment regimen.
At my second to last appointment, I was a bit disturbed because my rheum kept referring to medications or treatments as products. We have this product that does this. We have this product that does that.
I guess I am a consumer and medications are products, but I prefer to think of myself as a patient and these so-called “products” as therapies or treatments.
I think it’s easier to accept a doctor’s decry if it is referred to as a treatment or therapy rather than a product. At least, that’s not how I think of it.
Maybe this is just a matter of semantics, but I worry that if the patient is being viewed as a consumer and the medications as products, some of the humanness is being taken out of the equation.
Does my rheum think he’s trying to sell me a car? If so, he didn’t do a very good job. I honestly left his office feeling just as confused as before.
I think that more than products, treatments are a process. For me it has been a process of elimination. Tried CellCept, that didn’t work. Tried Plaquenil and had to go off that because of liver. Tried Methotrexate orally but had to go off of it due to liver. Tried Methotrexate injections, but had to go off of that – I don’t even remember why now. Tried Humira, but had to go off of that due to lupus flare.
The main concern with TNFs is that since it’s clear that Humira made my lupus flare, my rheum feels there is a significant chance that the same thing would happen if I tried other TNFs.
I can’t be on Methotrexate because of my liver. I’ve had mysteriously elevated liver enzymes that have only been normal one time in the last seven years (and they get checked at nearly every doctor’s appointment I go to).
My doctors are worried about over-the-counter pain relievers such as ibuprofen, since I currently have an elevated Creatnine level.
And then there’s my body composition. Maybe I’m just not made for these drugs. Then again, who is, right? But I just can’t win this game. It’s hard to stay positive when the options at this point seem so limited.
Kineret is injected every day. Orencia my rheum only suggests for older patients.
The problem is, my rheum isn’t treating just one disease. If I only had RA, maybe it wouldn’t be as complicated. But because I have lupus, as well, and have to be very concerned about organ involvement, there is no easy answer with how to treat and balance both illnesses.
The reality, right now, for me, is that I would like to be off of all of the meds. However, given that I am having uncontrollable disease activity, it is hard to walk down the no med route. But I am not really left with an easy decision if I decide to go the med route.
At my most recent appointment, we made the decision to try Rituxan.
The appeal is that I could potentially be off of everything else and only need one or two infusions a year.
I am quite worried about this, however. I was told that the first infusion will take seven to nine hours. And it has to be done in the cancer center.
There are also some other side effects that are worrying. I am trying not to read too much about it on the interwebs, because it only serves to scare me more.
I’ll be starting the beginning of March, so look for more posts about it then.
Published On: March 01, 2013