I’ve hit a rut. In terms of treatment for my RA and lupus.
Prednisone was the first medication I was put on, before I even had a diagnosis. I hate it, and have been on and off it, and on various doses, but it seems to be the one constant in my medicated life.
Then I was on Cellcept, which is a drug used for organ transplant patients, but has shown efficacy in lupus. I had to go off of that because my rheumatologist and I felt like it wasn’t doing very much for me.
I was also on hydroxychloroquine/ plaquenil, but had to go off of that because of liver toxicity.
Then I was on oral methotrexate, but had to go off of that due to the side-effects. Then I went on injectable methotrexate, but had to go off of that because of liver issues.
Then I was put on Humira, which made my lupus flare horribly, so I had to go off of that, too.
Currently, I am on anti-anxiety medication, birth control, flexeril, lactulose, prednisone, quinacrine, and a multi-vitamin.
The only thing I am really on that is supposed to help control my illnesses, other than prednisone, is quinacrine.
Clearly there is room here to add something to the mix. But when I talked to my rheumatologist, he painted a rather bleak picture. He worries that I will react to other TNFs the way I did to Humira, and we don’t want to chance it because I was out of commission for nearly a month. I’ve been on at least one drug from every class, and for whatever reason, I’ve had to go off of all of them, whether because of plateau, side-effects, toxicity, etc.
We talked about the variety of treatments available, but everything has a downside. Kineret is a natural product, but is injected daily. Some treatments come with the potential for severe complications that my rheumatologist doesn’t feel are worth it.
And all of this is of course complicated by the fact that I have both RA and lupus.
So where do I go from here?
I am torn as to what to do at this point. I am doing okay, but have noticed a lot of RA symptoms creeping back in that I had thought were gone for good.
I feel okay. I don’t feel great, but I don’t feel awful either. So I wonder how long I can go along the path that I am on. I would love to be more medication-free than on meds, however I do worry about doing permanent damage to my joints.
The bottom line is that no treatment, whether it works or not, is scot-free. They all have consequences, sometimes more emotional than physical.
It’s frustrating to hit a wall. But in some ways, this seems part and parcel of what RA treatment is. We do a dance from one treatment to the next.
Right now, I’m not sure whether my dance card is incredibly empty or incredibly full. I don’t know what the next step is. I don’t know what the right choice is. All I know is that I want to be as healthy as I can possibly be, and I don’t think I’m at that point yet, even though my quality of life is probably better than some.
Published On: December 26, 2012