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Crohn's Disease and the right meds..

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Crohn's Disease
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Posted 8/4/2008 5:28 AM (GMT 0)

OK!  so i am seventeen and was diagnosed with crohns almost two years ago. I always have stomach pain, and my bowel movements are often. I am currently taking 1.2 g of lialda but my symptoms ae getting worse, the doctors have already tried 6mp and I got the rare side effect of pancreatitis (that pain was even worse than the crohn's pain). Almost all the other meds the docs have put me on have given me severe headaches and fatigue...

I know my Crohns is not as severe as some other cases, so i am not looking for remicade or anything like that. I would just like a medication that I can take that doesnt give me massive headaches and i dont have to take with steroids and isnt as powerful as remicade...

I have already tried..

prednisone

pentasa

asacol

lialda

and 6mp..

any ideas or suggestions?!

Posted 8/4/2008 11:54 AM (GMT 0)
I'm not sure as everyone is different. I have tried all those you have listed and then some and I had side effects as well.
I'm currently on Methotrexate and it seems to be working some for me. My gut isn't so well lately but my joint issues
are gone.
Posted 8/4/2008 12:29 PM (GMT 0)
Hi Jenn_m and welcome! You have found a great place for input!

Wow! You've been through a lot! I hope you are successful in finding something that works better for you!

My son was diagnosed at the same age you were--he's just a year younger than you. It's tough, or at least it was in the beginning, but he is managing his CD with diet and supplements. Knock on wood, it seems to be working because he was told in June, one year from his diagnosis, that he is in complete remission. You are young, too, and it would be so worth it to give this a try. Maybe, just maybe it would work for you. There are other folks here for whom diet and supplements--possibly in conjunction with the most basic medicine like Asacol or Pentasa--are working.

Are you familiar with either The Maker's Diet or the Specific Carbohydrate Diet (SCD)? Both eliminate all processed foods, sugar, and certain starches or carbohydrates. The theory being that these foods feed the bad bacteria in the gut--and that's the LAST thing we want to do! We want to starve the bad guys out and re-populate the good guys with a good probiotic and/or SCD legal yogurt. And because these diets also remove gluten from the diet--especially the SCD-- many people benefit from that alone.

If you are interested, I can give you links and cook-books with endless information and recipes.

You probably won't get an endorsement for any diet whatsoever from your GI. We didn't. But now they are very curious as to what we did.

Of course there are always new drugs on the horizon. Maybe one will work for you! I wish you the best! :-)
Posted 8/8/2008 3:34 AM (GMT 0)
My daughter is also 17 and was diagnoised with crohns 5 years ago, she has been treated with wellbutrin. This is normaly used as a antidepresant but it also lowers TNF like remicade. My daughter has severe crohns and gained remission through the wellbutrin. Since then I have seen four other people gain remission through wellbutirn.

Ubob
Posted 8/8/2008 3:53 AM (GMT 0)
ubob, that is very interesting! I have never heard of using Wellbutrin for Crohn's
Posted 8/8/2008 4:05 AM (GMT 0)
Google burpoprian and crohns and you will find many references. This treatment is safe and effective and inexpensive, as it is a TNF inhibitor like remicade it will never be a primary treatment because the drug is to inexpensive. Wellbutrin cost $40 per month for my daughter, remicade costs 3-4k, for this reason you will not see welllbutrin as a primary treatment. Since my daughter I have personaly seen four other crohns patients gain remission through wellbutrin. IT WORKS, ITS INEXPENSIVE AND ITS SAFE!!!!

UBOB
Posted 8/8/2008 8:42 PM (GMT 0)
ubob, that's wonderful if wellbutrin has helped keep your daughter in remission, but let's not get carried away here.

First, wellbutrin is not nearly as potent in its TNF inhibition as are Remicade, Humira, etc. The amount of TNF inhibition from wellbutrin is likely miniscule in comparison. Very few, limited studies have been conducted on the efficacy of wellbutrin in treating Crohn's, or in inhibiting TNF.

Second, I would agree it is relatively safer than the anti-TNF antibodies, but no medication is completely safe, and all meds have side effects.
Posted 8/8/2008 10:45 PM (GMT 0)
I'd second what EMom has to say- look into a diet that restricts carbohydrates. You'll have to give up a lot of food, including bread, soda, and virtually all breakfast cereals- but the dietary restriction offers one possibility that the meds don't: the potential to wean yourself off of drugs, with a *chance* of reversing the damage. You were only diagnosed two years ago; if you start the Specific Carbohydrate Diet or something similar (the Paleolithic Diet should also be thrown in there, as that eliminates the undesirable carbs as well), you have a chance of putting yourself into remission FAST.

All this relies upon you doing well on the diet, of course, and not cheating. It doesn't work for everybody, but when it does- you can get your life back. Good luck, and best wishes.
Posted 8/12/2008 4:28 PM (GMT 0)
Beave

I would strongly disagree with you about wellbutrin being a weak TNF inhibitor, what evidence do you have to support that statment. You are correct that the research is limited on wellbutrin and it always will be. The IR wellbutrin runs approx $30-40 a month. The cost of remicare and humara as well as their profibility will never allow wellbutrin as a primary treatment. As to what proof do I have, my daughter has been a patient of Dr. Richard Kast who has used this treatment successfully for many years. Since my daughter has started on this drug I have been blessed to see 4 other people start the wellbutrin and all four quickly gained remission, one was a crohnie from this site and she told me that she had not been in complete remission for ten years; Another was a patient of mine who flared during her pregnancy and wanted to try the wellbutrin but her GI refused as he wasn't sure if it was safe so instead she was kept on pentasa and high doses of prednisone ( wellbutrin is perfectly safe to use during pregnacy). After her pregnacy she demanded and was given a script for wellbutrin IR and was in remission within a week, this is typical of the repsonse with wellbutrin. Why isnt it being used, I believe that its due to the money being made on remicade and the other drugs. Dr. Kast once told me that this is a free lottery ticket, theres nothing to lose and everything to gain. There is a life time to try the other medications. My daughter will be on wellbutrin for the rest of her life and likely with no negative health effect, which other crohns drugs can make that claim. I would give anything to not have my daughter on any drugs but I feel blessed every day that at least this drug works and that its as safe as any drug can be.

UBOB
Posted 8/12/2008 7:36 PM (GMT 0)

ubob, you are the one making the claim -- that wellbutrin has potent anti-TNF capabilities -- therefore, you should be the one to supply the evidence.  But you can't, because there isn't any.  There isn't even a solid hypotheses as to how or why wellbutrin could inhibit TNF.  Tell me how it works to inhibit TNF.

And, quite frankly, a "study" of four people you know is not evidence at all.  It's anecdotal only.  With a disease that waxes and wanes with no known reasons, having four people do better on a med is not sufficient evidence.  It could be placebo effect.  It could be lucky coincidence.  Yes, it could be that somehow wellbutrin *does* help, but you don't know that.

The conspiracy theory that wellbutrin isn't studied because drug companies can't/won't make money off of it if it's shown to be an effective treatment for Crohn's is just that -- a conspiracy theory.  If more doctors took the hypothesis seriously, it would get studied more.  But they don't.

Also, I saw in another post that you mentioned your daughter was also on Cipro, right?  If wellbutrin is so effective, why the need for cipro?  Or perhaps it's the Cipro that's helping her.

On a sidenote:  I've been on Effexor for the last 1 1/2 years and my Crohn's has done exceptionally well in that time.  Is that enough evidence for me to claim that Effexor also is effective in Crohn's?  Of course not.

It may turn out that wellbutrin does have an effect, but until you can supply evidence -- real scientific evidence -- I'm skeptical.

Posted 8/12/2008 8:26 PM (GMT 0)
Wellbutrin and TNF: http://www.wipo.int/pctdb/en/wo.jsp?IA=US2006006732&DISPLAY=DESC
Posted 8/12/2008 8:44 PM (GMT 0)
Hi Jenn_M:
Probably not the best option, but I successfully took Cipro for five years. It has recently stopped working for me but it was the only thing that worked other than Prednisone. I am currently taking Humira, and not so patiently waiting for it to start working...
Posted 8/12/2008 8:50 PM (GMT 0)
Thanks for the link, keeper.  I had seen info on this patent, but I hadn't actually seen the patent listing in all its detail.

Some of you may remember this very topic was beaten to death on here back in 2007.  At that time, healingwell member fc1001 said he had emailed the doctors involved, asking for published data.  They never responded.

Quite frankly, one might think I'm impressed by the patent, but having been in the technology industry the past 13 years, the opposite is actually true.  I know just how easy it can be to patent a bunch of, well, BS, in certain circumstances.  You just need to make it sound good.

And I find it quite interesting that the two doctors so heavily involved in promoting buproprion and its anti-TNF efficacy are (1) the patent owners, and (2) paid consultants by Glaxo, maker of Wellbutrin.  ubob claims that financial interests are keeping buproprion from being studied more, but I submit the opposite conspiracy theory:  Drs. Kast and Altschuler, and Glaxo, have a rather large financial stake involved if buproprion does prove successful.  So they're going to leak as much positive "preliminary" results as possible.  The fact those preliminary results never became publishable, final results speaks volumes to me.

One final note:  A couple of posters in the thread from 2007 said they could not tolerate the side effects of wellbutrin.  This goes to show that its "safety" isn't quite as good as claimed.  Like I've said, all meds have side effects.  All meds have people who can't tolerate them.  The push for buproprion reads more like an infomercial, a marketing campaign, than a real scientific endeavor.

Posted 8/12/2008 8:59 PM (GMT 0)

I just thought of another issue with the research on this topic:

The preliminary results that looked so promising used measures of Crohn's activity like the CDAI (crohn's disease activity indicator), a short list of questions basically of "how are you doing?"  The weakness of these measures is well-known.  The CDAI has a very difficult time differentiating real Crohn's inflammatory manifestations from IBS symptoms.  In other words, a patient who has IBS along with IBD (which is quite common) could show a significant improvement in their CDAI numbers simply by improving their IBS, with no real improvement in IBD.  Real IBD improvement would need to be verified with imaging or endoscopic studies along with questionnaires.  It's quite possible the improvement in the CDAI shown in buproprion-treated patients comes from the buproprion treating IBS-related symptoms, and not actual Crohn's issues.  Not being able to differentiate the two is a clear weakness of the preliminary results published on buproprion.

Posted 8/12/2008 9:04 PM (GMT 0)
Dr. Kast and Dr Aucshler do have the patent on wellbutrin for treating crohns, SO WHAT! there is no money to be made from that patent, if wellbutrin became a standard treatment for crohns the price would not change as it is already a off patent drug for depression, is the pharmacist going to ask you what you are taking it for and charge crohns patients one price and depressed patients another. Dr. Kast or Aushcler cannot make any money on this patent regardless. I believe the patent was obtained to help promote the research that they were involved in. I know its hard to imagine the pharmacuticals trying to prevent this from being a standard treatment as they are looking out for our best interest. And yes beave this was kicked around the bulletin board in 2007 but who do you know that put it to the test including the right type and dosage. So far its at 100% with the four patients that I have seen on it.

UBOB
Posted 8/12/2008 9:30 PM (GMT 0)
Well, if you include the people who responded to last year's thread and said they either couldn't tolerate the med, or they got no benefit from it, then you're no longer 4 for 4, are you?  But you only seem interested in noting the successes, not the failures.

Posted 8/12/2008 10:28 PM (GMT 0)
What type of wellbutrin were they taking, what was the dosage?? I have not seen anyone taking the correct type and correct dosage not have sucsess. Most prescriptions for wellbutrin are SR (sustained release) this does not generally work, the dosage needs to be correct 100mr 3x/day of the immediate release. I believe most of these people were treated for depression and were not treated correctly for crohns so they were not likely to suceed. What is the difference between Pentasa and Asocol? It is the encapsulation, this allows for delivery in different areas of the digestive system, this is likley why the SR does not work, also large doses of wellbutrin often cause stomache pain and why the low dose works much better. My daughter has tryed to take her meds once a day and besides causing a flare it caused stomach pain. In regards to the research Dr. Kast has give me approximately 40 pages that I have repeatedly faxed to crohnies who have requested it. Dr. Kast has a busy practice as well as a family I imagine that he is at times busy. I would truly be interested to see the faliures of thoses who have taken the appropriate dose and type, I dont think that you will find any though as the IR is not as commonly prescribed.

UBOB
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