YAY! I’m finally getting to taper off of my prednisone, which I was taking at an impossibly high dosage of 40mg/day (I know some folks may be higher, but not many). This stuff is nasty with a capital “N.” Lots of long-term side-effects: glaucoma, blurred vision, thinning bones, etc., etc…
Anyway, I suffer from ulcerative colitis, and one of the primary treatments is initially high dosages of prednisone, which is a strong anti-inflammatory steroid. Aside from the side effects listed above, there is also weight gain, bloating, irritability, and more. Normally, the UC reacts quickly to the prednisone, the symptoms subside, and the dosage is tapered off relatively soon. Unfortunately for me, my UC did not respond as well during this flare-up. I have been unable to drop below 20mg/day for nearly 2 years…the doctor would start me at 40mg at the start of a flare-up, then after a couple of weeks the symptoms would diminish and we would drop my dosage about 5mg/week. Once we hit 20mg, though, I would have a renewed flare-up and I’d be back at 40mg. It was VERY frustrating. Even more frustrating, my gastroenterologist was now considering that surgery might be necessary. This is not a good thing, since the solution is to remove the affected portion of the colon and basically fit me with a permanent colostomy bag for the rest of my life. I was desperate…
So, I turned to the internet. I saw a lot of information out there that scared the bejabbers out of me, and a lot of “miracle cures” for colitis that looked, well, very fishy - particularly since they claimed cures for Chrone’s disease and IBD, but not specifically UC. One caught my eye, though, because of the absolutely enormous number of testimonials from people with UC. Naturally, I was skeptical but noticed that the vast majority of the testimonials included information to contact the person making the claim. Being desperate now (if you have read the symptoms for UC in the link above, you would understand), I summoned up my courage and called one of the numbers. The person on the other end was very friendly and he assured me that he had been symptom-free for several years, and had also been on large doses of prednisone with no relief before he tried this product. (No, I’m not going to hawk this product here on the SDMB.) The product was expensive ($465/3 months!!), but I had to try it…
I took the dosages recommended by the company, following a particular diet protocol that they guided me through, and charting my progress. (TMI at this point…) After 4 days, I had my first formed movement in 2 years. I was literally amazed. There was still blood in my stool, but I was not having to run to the bathroom to pass only mucous and blood. Also, some of the edge had come off of the urgency. After 2 weeks, I was only having formed movements, and no blood was seen in my stool. I made an appointment with my gastroenterologist, so we could discuss my results.
I explained to the doc what I had done, and he was very interested. It turns out that he was aware of research in long-chain polysaccharides (which is what the product is, in its base form), and was anxious to follow my progress. Since my symptoms were very nearly clear, we scheduled a sedated, flex colonoscopy for one month later. We also agreed to start tapering the prednisone.
The scope was performed, and at that point I was down to 15mg/day of the prednisone (remember, I had been having trouble dropping below 20mg), and still taking the polysaccharide. The results came back from the scope - not only was I clear of UC, but the lab could not tell that I had ever suffered from it. My doctor was amazed, as was I.
We are tapering the prednisone more slowly now, to avoid withdrawal side-effects, but I’m now down to 10mg/day and it looks like I’m going to be completely off of it by the end of April!
If anyone is curious, they can e-mail me and I’ll tell them more about this stuff, but that is NOT the purpose of this post - I don’t sell this stuff, etc., etc., etc…I just wanted to share my good fortune, because I’m not going to have to go under the knife now!!!
NOTE TO MODS: If telling people they can e-mail me is “over the line,” please remove that portion. Thanks!
- Dirk