Crohn's Disease Forum » Support Forum » Specialist Didn't think much of MY Plan.. .Thoughts? Ulcerative Collitis.


09-29-2010, 03:36 PM   #1
BulldozerKing
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Specialist Didn't think much of MY Plan.. .Thoughts? Ulcerative Collitis.

So, on my third cycle of Prednisone this year (May was 1st)... Am doing fantastic -- Hemoglobin at 8.7G/L though, due to last episodes-- Now I suggested to Specialist I finish weaning off Pred (at 30, down to 20 on Friday, 15, 10, 5) and keep on my Asacol, VSL#3 (which I tolerate now) and start up Salofalk as it helped me years ago and see what happens......

Background -- 20 years UC, only 1 blip in 2002 where 1 round of Prednisone did me good.. other than that only have taken asacol and the occasional salofalk.

He responds to my plan by asking me : "Do you want your colon removed?"

He said I had 3 options
1. Imuran
2. Remicade - more aggressive than #1
3. Colon Removed.

Obviously he is a proponent of aggressive action....

Thoughts? He prescribed me Imuran to start now (though he wanted to go right to Remicade) - 50mg a day for week 1, 100 a day week 2 and 150 a day week 3. I see the specialist again in 7 weeks.

Ticks me off is that no discussion of WHAT or WHY suddenly this May I went completely down hill! Don't want to start these organ rejection drugs!!!!
09-29-2010, 04:09 PM   #2
katiesue1506
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I would honestly kind of agree with your doc. If you've had to have 3 rounds of pred in 5 months, it sounds to me like you need something that will be a little better at handling your immune system.The way my doc has explained it, is that even if something has worked for you in the past, we are ultimately fighting our immune systems, and as the immune system learns the current drug you're on, it learns how to get past the drug. That is why we most generally need many different drugs. The immune system is so adaptive, sometimes you have to throw something new at it.

I've had Crohn's since 2006 and I know very well how aggressive the immune system can be (having been on most everything for Crohn's in that short of timeframe). I'm currently on Humira weekly and 250 mg of Imuran myself (which is a LOT for a girl my size).

BTW, that hemoglobin count is verrry low. That suggests, that even though you may feel fine, you are loosing blood somewhere internally (called occult blood). It could also just be that you are really malnourished too.

I will also say if you aren't comfortable with your doctor to find a second opinion. You do have that right, always.
09-29-2010, 04:32 PM   #3
BulldozerKing
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Doc brushed of Salofalk when I suggested it, his mind was made up for Imuran or Remicade. I suppose I will start tomorrow and see what happens

Mind you with the exciting news from AFMNet I might not have to wait long for a "cure" (Prof. Yoshinori Mine's research at the U of Guelph) -- as reported in the last issue of badgut.org

just frustrating that after almost 20 years of very mild UC (one blip in 2002) I am suddenly thrown into the oh oh world..... something set it off or just the nature of the disease? Only thing that changed was that I lost 35 pounds of Fat via exercise and eating well the 8 months prior to my May disaster... surely that couldn't be it!!
09-29-2010, 04:37 PM   #4
seaofdreams
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In all honesty, I wish the doctors here were able to take the "top-down" approach to medication for IBD rather than working up the ladder. There is a lot of research to suggest that the "top-down" method induces remission in more people and for longer periods of time.
I agree with Katie Sue, if you feel like you need a second opinion you should go for it.
Best of luck with what you decide on
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09-29-2010, 05:15 PM   #5
Rossy
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Looks like your Doc is trying to get you into remission by using these more powerful drugs. I would think its an appropriate way forward, and as katiesue says its really quite usual to have to try the new meds as what worked once does't always continue to do so.

When I was discharged from hospital a couple of months ago, the Doc said to me to start thinking about having my colon removed, thankfully i'm doing ok just now and hopefully the same will happen to you. Its hard to predict how things will go and you might get better very quickly.

As for why you've got worse this year i don't think anyone could answer that, seems some people never get proper remission and have to have surgery, whereas others only get a couple of flares in their lifetime .

Diet doesn't play such a big part in UC as it does for crohns so i doubt you getting fit played any part in you becoming unwell.

Take care

G
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2003


Just about hanging on to my Colon!
Mezavant xl
Pred (my back up)
Entocort (no longer works)
Azatrophine (gave me pancreatis - ouch)
09-29-2010, 05:16 PM   #6
BulldozerKing
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What the... came across this : This is from 2004.... anyone "cured"

Worms and IBD
Worms & IBD: Have we become too clean?

The prevalence of helminths – harmless minute parasitic worms – in our population has been drastically decreasing since the middle of the 20th century. Historically, humans co-existed with these creatures in what researchers are now coming to believe to be an essential immune regulatory relationship. Scientists wonder if we have become too hygienic, removing natural harmless species that may, in fact, form a pivotal role in our health. The ‘too clean’ theory has arisen in part due to the correlation between exposure to worms from childhood in less developed parts of the world and the corresponding low incidence of inflammatory bowel disease. However, in the hygienically focused developed world there has been an increase in the persistence of several immune diseases, including inflammatory bowel, asthma, and type-2 diabetes. Since inflammatory response diseases involve an overactive immune system, some researchers believe that our bodies are designed to co-exist with parasites. For an individual without a parasite there is nothing to act upon except itself, resulting, they believe, in digestive diseases such as Crohn’s disease and ulcerative colitis.

At the Digestive Diseases Week Conference in New Orleans in May 2004, Dr. Joel Weinstock, and his fellow researchers presented data that involved introducing one variety of these worms into the digestive tracts of IBD patients. They used a species of helminth, Trichuris suis, a nematode that colonizes pigs, commonly known as the pig whipworm. Swine whipworms can infect humans but do not develop to mature adult worms.

Fifty-four ulcerative colitis patients and 29 Crohn’s disease patients with active, long-standing, persistent disease ingested a drink containing 2,500 pig worm eggs every 3 weeks. At the end of the trial, 47.8% of the ulcerative colitis patients had responded to the treatment, while 72.4% of the Crohn’s disease patients demonstrated remission. Symptoms such as abdominal pain, bleeding, and diarrhea disappeared.

Europe and England have embraced this idea, but it’s been neglected in North America. There are certainly many opinions on it, but very little scientific data yet to lend validity. “A lot of researchers couldn’t believe this treatment was effective, but people are always sceptical when confronted with new ideas,” explained Weinstock, the lead researcher.

“We found that this unique therapy was well tolerated and produced a substantial improvement in Crohn’s disease patients,” said Joel Weinstock. “These results strengthen the notion that the de-worming of the population is related to the increased frequency of Crohn’s disease in industrialized countries. It now may be possible not only to safely treat, but also prevent inflammatory bowel disease by exposing children to natural biological agents lost from their environment.”

In a PatientCommunity.com interview with Dr. Weinstock, he explains his theory further. He chose to use the species Trichuris suis, because it is genetically similar to the worm found in humans, Trichuris trichiur, but has these advantages:

1. Trichuris suis can be produced in pathogen-free pigs under ultra-clean conditions. The worms are then taken from the pigs – which cannot be done with humans – and then grown in a test tube. Those worms then produce eggs, so they are not working with pig stool, but simply pure eggs. These eggs are then processed to render them bacteria and virus free. The eggs are very durable – they are extremely stable, and can sit in a refrigerator for a year
2. They are essentially luminal agents – they live in the gastrointestinal tract, and do not get into the blood stream, the liver, or any other organs, tending to colonize in the ileum and colon.
3. These worms do not stay in humans for long because we are not their natural host, and they are eliminated within a few weeks. These worms never reach adulthood, they never produce eggs, therefore there are no eggs to spread into the environment, or to other people. Even if they did produce eggs, these could not be spread to people around you and cause infection by hand and mouth, as they require an eight-week incubation period in soil.
4. There is an effective drug to get rid of this worm and if it seems to be doing something wrong, you take one dose of this agent and you are worm-free.
5. There are no known diseases associated with exposure to these organisms. The natural host of the worm is the pig. Around the United States, there are many pig herds that carry this organism, so farmers have been exposed to these for a long time. Therefore, the safety level seemed to be extremely high, and this is why the human investigation committee gave permission for this study. Dr. Weinstock adds, “We have treated people beyond a year and a half – almost two years – and we have seen no ill effects of chronic use: no liver abnormalities, no nausea, no abdominal pain, no reactions.”

So, could the cure for IBD really be as close as the farm? Only time will tell.

First published in The Inside Tract® Newsletter Issue 144 July/August 2004
09-30-2010, 01:01 AM   #7
Rebecca85
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There are a few tgreads about this in the treatment section- look for 'helminthic therapy'. We also have a wiki about it www.crohnsforum.com/wiki/helminthic-therapy
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09-30-2010, 01:03 AM   #8
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By the way, isn't salofalk mesalazine, the same as asacol? In which case it seems kind of pointless, or even dangerous, to take both together.
09-30-2010, 07:53 AM   #9
HelminthicTherapy
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http://www.crohnsforum.com/wiki/Helm...kworm-whipworm
is the link

Last edited by HelminthicTherapy; 09-30-2010 at 07:57 AM.
10-01-2010, 08:17 AM   #10
vonfunk
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Salofalk doesn't cross the blood barrier, and somewhat lines the colon when it breaks downs. It shouldn't react with anything.
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10-01-2010, 08:45 AM   #11
Rebecca85
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Yes but it's the same as Asacol, that also stays in the colon, so might there not be too much in the colon?
10-01-2010, 08:54 AM   #12
vonfunk
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I talked to my doctor regarding upping my salofalk during a flare he said I can go up to 5 gm a day, but he said it doesn't do much after 4gm, anything beyond that is pointless and a waste of medication. The most it will really do is increase any side effects if you get from it.
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