Sunday, 9 February 2014

Is It Working?

Dr K (my rheumatologist) asked me: "How's the sulfasalazine going? Is it helping?"

Is the sulfasalazine working?
"How do I tell?" I asked. "When I'm taking so many drugs, I don't know which one is doing what."

Sulfasalazine is the most recent drug he has given me. It certainly made a difference to start with, but I can't tell if it's still doing anything that the rest of the drugs wouldn't do.

Dr K's solution?

I have to stop taking sulfasalazine for a month. If I get sick, I should start it again and see if it makes a difference.  If I don't get sick, that's one drug I can take out of my cocktail.

Like most drugs for lupus, sulfasalazine was developed to treat something completely different. In this case the completely different thing was Crohn's disease.  Dr K had thought it would help with my gut symptoms as well as my other lupus symptoms. He'd initially suggested that if it worked really well, I might be able to eat gluten and lactose again.

It never worked quite that well.  I still had reflux when I ate or drank anything with lactose, and still had irritable bowel whenever I ate gluten... so that didn't help a lot.  But it had initially seemed to help a bit with the general aches and pains and fatigue.

I've only stopped taking it for a couple of days - so far I haven't really noticed any difference. So maybe the rest of the drugs in my cocktail are enough without it.

But it leaves me with the question - is there any way to know which drugs are working and which are just surplus to need, without taking the risk of stopping a drug that might turn out to be very important indeed? Apparently, Dr K couldn't think of any.

So much of lupus treatment seems to be trial and error, with a treatment that makes a huge difference for one person either not helping or making things worse for another person. It's one of the many frustrations of living with an unpredictable and frustrating disease.

1 comment:

  1. Thanks for this post. My rheumatoid just started me on sulfasalazine for lupus.


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