The lure of NSAIDs (non-steroidal-anti-inflammatory drugs) like ibuprofen is their easy availability, low cost, and ability to alleviate symptoms. But like all drugs they come with side effects and toxicities, which means that their role in combating CLL is necessarily limited.
When I read about ibuprofen controlling the nodes, I decided to give it a try. I didn't need a lot of convincing, as I had always rather enjoyed the effects of ibuprofen on those rare occasions when I took it for a headache or muscle pain. It would leave me with a pleasant feeling, not exactly tranquilized, but just that more at peace with the world.
I found that it worked on the nodes to a small and very temporary degree, just enough that I began to take it when my ever-growing nodes got painful. Even then, I never went up to the line and used it as much as I could. I am rather conservative about drug use. The most I did was take it once or twice a day for two or three days.
Later, by the way, when I used steroids, the nodes reduced dramatically, so there really is no contest when it comes to NSAIDs vs. SAIDs. But steroids are much worse in terms of side effects; being conservative about drugs, I used single-agent Rituxan for as long as I could before circumstances, in the form of my AIHA diagnosis last March, forced me to throw steroids into the mix. AIHA, of course, is short for autoimmune hemolytic anemia, about which I have written a great deal, and which I would not wish on my worst enemy.
After I came down with AIHA, I stumbled across an interesting bit of information in the Merck Manual online. Ibuprofen was listed in a table as one of several drugs "that can cause warm antibody [autoimmune] hemolytic anemia."
It was hard to find any more information on the subject, but I immediately quit using it, even on the rarest of occasions. I am convinced, based on my reading and the conventional wisdom of doctors, that my AIHA came about as a result of the CLL having gotten out of control and gumming up the immunity works. But the thought that ibuprofen might have had even a tiny role in helping me reach the tipping point into hemolysis -- the vicious cycle in which the body destroys its own red blood cells -- was enough to make me quit using it.
Some time later, after my R-C(V)P therapy at the end of last year, I wrote to Dr. Clive Zent of the Mayo Clinic. Dr. Zent is a CLL and autoimmune disease expert who has generously allowed me to share his thoughts with you. I asked, quite simply, whether it w as safe to use ibuprofen, or whether it could contribute to a possible relapse of AIHA. Here's his reply:
Ibuprofen -- this is certainly a drug that has been associated with autoimmune complications including AIHA. It (and all the other drugs in its class -- NSAID) have many other potential toxicities which are generally rare. We rarely determine the triggers (if any) of AIHA in an individual. This is all a prelude to saying that unless ibuprofen was the cause of your AIHA, I don't believe that you are at high risk of causing a relapse of your AIHA if you use the drug, but it (and all other drugs) should be used only when indicated. If acetaminophen is effective for your pain, it could be a safer option.The bottom line is "better safe than sorry." How to handle CLL and its myriad effects is something that keeps even the experts guessing. Those of you out there who are Coombs positive, or have been diagnosed with AIHA, and who are also scarfing down the ibuprofen, may want to think twice about it.