I am under the impression that most people contributing to this BB have stopped their usage of NSAIDs as recommended by the protocol. I assume most had reached a point of urgency in their conditions that they felt that they needed some drastic change in order to turn their lives around. Many were (and some possibly still are) on the more powerful DMARDs such as methotrexate, plaquenil, gold salts, arava, and even steroidal anti-inflammatories such as prednisone. These drugs tend to have more consistent, long-lasting inflammation and pain control. For those on such drugs and also testing foods as described in the protocol, this is convenient, because these drugs provide consistent pain relief, which gives a "baseline" pain against which they can measure the effect of foods. Sudden increases in pain can easily be associated with a recently eaten food because their drugs to not fluctuate in their pain control.
About a year ago, I had stopped taking methotrexate (after about 2 years of use), having become educated about the dangers it presented to my health. It was my only DMARD, but I occasionally used an NSAID (indocin) and a pain-killer (propoxyphene) on an as-needed basis. Several months after stopping the methotrexate, my symptoms got significantly worse, and I had to up my frequency of use of the indocin and propoxyphene significantly, to make up for the increased symptoms. This increased use has carried forward to today, even after doing the elimination diet. Robert McFerran suggested that I stop the indocin initially (as instructed in the protocol), which I did try for about 5 days. My pain increased tremendously right away, but gradually lessened over the 5 days. Unfortunately, the pain plateaued at too high a level for me to be able to tolerate every day. Robert had not been aware that I wasn't on a DMARD, so he actually changed his recommendation, suggesting that I continue using the indocin. He expects that over the next few months, I will find that I don't need it anymore.
However, my usage of indocin will increase my intestinal permeability (i.e. more leaky gut), and increase the effects of "bad" foods (allowing them to enter the bloodstream), and potentially allow new food allergies to form. What's worse is that I take it twice a day, providing me with swings of pain control throughout the day. This makes it very difficult for me to test new foods. One, because the indocin will diminish the intensity of the pain which would have been brought on by eating a bad food; and, two, because I always have an increase in pain when the indocin wears off (mimicing the effect of eating a "bad" food). It's a bit of a catch-22, and makes it very difficult for me to progress through the process of testing new foods, because I never feel like I can make definite conclusions about the foods I test. Am I the only one with this problem?
Re: Anyone using NSAIDs still? (Learning is the key.)
Posted by Walt Stoll on March 06, 1999 at 10:18:15:
In Reply to: Anyone using NSAIDs still? posted by Robert Herstein on March 05, 1999 at 11:37:54:
MY recommendation is to do EXACTLY what you are doing: GATHERING INFORMATION! We all are much too different to recommend any one approach for every person. ONLY the person him/herself can know what is best (and even sometimes not even THAT person). Anyone else can but serve as a consultant to the involved person's seeking.
Regardless, the more you know, the more likely you will do what is best for YOU.
Even though the intermittant use of NSAIDS will further damage the GI lining, sometimes one has to do it anyhow. It is the long term use that causes most of the damage. I see no problem with NSAIDS (when seen in the total context) IF the person is doing an effective SR and has some growing awareness of the LGS connection in the meantime. Within 6-12 months they will no longer need the NSAIDS anyhow.