Today I inoculated with a second dose of hookworms (40). The experience has been much like the first time - pin pricks going in and a faint rash at the beginning. I now have a total of 70 hookworms and 300 whipworms.
I have discontinued prednisone and will continue taking entocort and asacol for the foreseeable future. I had one instance of red streaks in my stool this week but otherwise I have been fine.
Thursday, July 11, 2013
Friday, July 5, 2013
Week 8 Review
While my doctor suggested discontinuing prednisone on Monday I decided to do one more week at 2.5mg/day just as insurance against withdrawal symptoms. At week 7 I would say my hookworm rash had completely disappeared. I have generally been doing well.
Thursday, June 20, 2013
Week 6 Review
On Monday I decreased prednisone to 5mg/day. In two weeks I will only be on entocort. I'm feeling considerably less wired (an effect of the prednisone) and my appetite has not been as insatiable.
And this morning I took my second dose of whipworm - 200 ova. Five more doses (spaced 6 weeks apart) remain.
And this morning I took my second dose of whipworm - 200 ova. Five more doses (spaced 6 weeks apart) remain.
Friday, June 14, 2013
Week 5 Review
The rash has continued to fade and not much else has changed. I also saw my GI on Tuesday. He wants me to continue to taper off prednisone and try to establish a "maintenance" dose of entocort. I should note that I am not tapering off prednisone in hopes that the helminthic treatment is working. It will be many more months before the whipworms are fully colonized and John Scott sent me this really great post by Jasper Lawrence on why Chron's sufferers should really wait close to a year before attempting a med taper in favor of helminths.
Rather, I am tapering off of prednisone in favor of entocort (a formulation of budesonide) at my doctor's recommendation because it has fewer systemic side effects. Prednisone is quite simply nasty stuff to be on long term. My first blog post coincidentally was during the first week where I had started taking budesonide and had begun a slow tapering down from prednisone at 40mg. I began the prednisone after my extremely bad 6MP reaction.
"Normally" I haven't taken either prednisone or budesonide as maintenance medications. I have been taking Asacol for roughly 12 years and for most of that time it seemed like it has supported remission but the last couple of years have been rocky and I have had to use prednisone several months at a time to quiet some bad flares. It's my doctor's opinion that I may need to be on something like budesonide long term. Of course it's my hope that it won't come to that.
As an aside, even if the helminthic therapy produces good results I don't plan on eliminating Asacol from my regime. I seem to tolerate it fine; it has few side effects; and there's even some evidence that it may be protective in colo-rectal cancer [Tang 2010].
Rather, I am tapering off of prednisone in favor of entocort (a formulation of budesonide) at my doctor's recommendation because it has fewer systemic side effects. Prednisone is quite simply nasty stuff to be on long term. My first blog post coincidentally was during the first week where I had started taking budesonide and had begun a slow tapering down from prednisone at 40mg. I began the prednisone after my extremely bad 6MP reaction.
"Normally" I haven't taken either prednisone or budesonide as maintenance medications. I have been taking Asacol for roughly 12 years and for most of that time it seemed like it has supported remission but the last couple of years have been rocky and I have had to use prednisone several months at a time to quiet some bad flares. It's my doctor's opinion that I may need to be on something like budesonide long term. Of course it's my hope that it won't come to that.
As an aside, even if the helminthic therapy produces good results I don't plan on eliminating Asacol from my regime. I seem to tolerate it fine; it has few side effects; and there's even some evidence that it may be protective in colo-rectal cancer [Tang 2010].
Thursday, June 6, 2013
Week 4 Review
On Monday I reduced prednisone to 10mg/day. The hookworm rash became very angry this week (continuing from last week) but has since started to subside.
Thursday, May 30, 2013
Week 3 Review
For 4-5 days early in the week I had really bad gas. It didn't manifest in pain or bloating but the smell was truly toxic and prolific. My wife wondered if it might be my GI microbiome re-aligning with the helminths. That sounds a bit feng shui to me but I think the gas is likely helminth related because otherwise my diet hasn't changed. These symptoms are listed in the hookworm timeline as an uncommon but observed side effect that may happen in week 3. Fortunately the gas passed a few days ago.
I was also surprised that the spots that make up my rash have become raised and more pronounced this week. The hookworm timeline suggests this may be a consequence of the hookworms becoming adults and attaching to the intestinal wall and the immune system is reacting in kind to both the worms and the debris left in the skin.
I was also surprised that the spots that make up my rash have become raised and more pronounced this week. The hookworm timeline suggests this may be a consequence of the hookworms becoming adults and attaching to the intestinal wall and the immune system is reacting in kind to both the worms and the debris left in the skin.
Friday, May 24, 2013
Week 2 Review
I had more bloodwork done yesterday and everything is in range except for my platelet count, which is still low from my 6MP encounter. But the good news is that it is slowly climbing.
On Monday I reduced my prednisone to 15 mg/day per doctor's instructions and will continue to taper down 5mg every two weeks.
I've felt pretty good for the last couple of days. While the hookworm timeline says this about the right time for a "worm bounce" (a sudden improvement in symptoms) I actually attribute feeling a bit better to the lower prednisone dose. Prednisone makes me feel really wired and each time I have lowered my prednisone dose, I've felt a little calmer.
On Monday I reduced my prednisone to 15 mg/day per doctor's instructions and will continue to taper down 5mg every two weeks.
I've felt pretty good for the last couple of days. While the hookworm timeline says this about the right time for a "worm bounce" (a sudden improvement in symptoms) I actually attribute feeling a bit better to the lower prednisone dose. Prednisone makes me feel really wired and each time I have lowered my prednisone dose, I've felt a little calmer.
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