New Article about Interesting Crohn's Treatment

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Thank you so much for posting such an interesting article! I am amazed that 63 people have viewed this, and no-one has made a comment

I read the entire article and then did some more research. Its just crazy to think that there is a treatment out there like this, but none of the doctors have ever mentioned it to us. Some of us have had resections and all kinds of complications and we are not told about how IVIG treatments can put ibd into complete remission in as little as 24 hours. Post colonoscopies show no inflammation - from people who had severe inflammation before the infusions.

It appears from reading some literature, that the IVIG infusions are very expensive. But, now that Remicade is so expensive anyway, shouldnt they take another look at IVIG for ibd? Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It is FDA approved for a list of illnesses - but crohn's is not one of them because "there is insufficient evidence" and then goes on to quote one study, where 19 patients with SEVERE crohns, received IVIG, and within one month, 14 were in complete remission. I am not sure if it is approved for off label use in ibd for steriod resistant cases.

Has anyone else heard anything about this - or have any further information?
 
I just hate insurance companies most of the time. What makes more sense, to spend on an expensive medicine that works, or keep spending nickel and dime amounts (to them) on treatments and tests that aren't working?
 
Kelly,

Money is a factor, but not only.

Medicine in the US and many other countries works the following way. Opinion leaders decide which drugs should be used and which not. And opinion leaders are always receiving "honorariums" or "consulting fees" from big pharma companies - just look at the acknowledgment section of each of their papers to know who lines their pockets.

Now for a drug like Remicade or others, the manufacturer is happy to pay consulting fees. But for IVIG, there is no patent and there are 10 different versions on the market. Why should an IVIG manufacturer pay for double blind RCT studies, when they have no guarantee that their product will be used.

The answer is always :follow the money trail. Caveat Emptor.
 
Thanks for posting hopeful!

I don't recall having heard about this so know absolutely zilch about it. Might have to do a bit trawling I think!

Dusty. :)
 
heaven forbid they allow something that actually WORKS ... we can't have that now can we... the other drug manufacturers will go broke.

the system sucks!
 
skippy,

I wouldn't be that cynical. They need something that works, but only as long as you continue taking it.

Its all business. They are out to make money. Nothing wrong with that, so long as they don't try to fool us otherwise...
 
I was being overly cynical I know, but the big pharma companies have their lobbyists and yes it is a buisness and they are out to make money...

I would like to see the FDA grant approval for more testing, it's just a shame that Politics has to be an issue, *sigh*
 
Skippy, I'm with you. If the pharmaceautical companies didn't make so much money keeping us sick, who knows, there may even be a cure. No just for IBD, but lots of other chronic illnesses as well.
 
I'm going to do some more research about these ivig infusions and let you know what I find. It just doesnt make sense.
 
Last edited:
Take a look at this study.

19 patients who were steriod resistant were administered a week's worth on IVIG infusions, and those that could be followed, had a mean remission duration of 20 months. From just that one week of treatment. For that to happen to refractory patients, is unheard of. Unbelievable that more studies have not been done.

http://www.ncbi.nlm.nih.gov/pubmed/17620224
 
:study:

THat is interesting,

Then I read the Conclusion which read more like a disclaimer ..
The article was pubished 5 years ago, you would think that since then there would have been more trials and studies done...

Crap like that annoys me.. :ymad:
 
I wish we could get more attention and eyes on this treatment. I'm sure if you got enough crohns support through writing the right people, it's a good chance of this getting approved for crohns. It's approved for much less debilitating conditions, like chronic fatigue syndrome but not crohns. Oh I hope most read that this stuff puts severe cases into remission in 4 days. That is an amazing feat not even rivaled by remicade ( which normally takes a couple infusions to pull you out of a bad flare 100%. But anyone can make this stuff, so it's up to us to raise grants and things for funding - which is not impossible...

Sorry if I went over the same stuff already heard. Didn't read everything
 
This would be the ideal treatment when your back is up against a wall and nothing's working. Pretty crazy no one even offered me this suggestion before I almost died, and went onto a $200k stem cell transplant
 
Mr. Ziggy,

I agree with what you wrote. Being that everything I have looked at claims this treatment is very safe and with the most experienced side effects being some short lasting fever (which they say happens rarely), what is there to lose other than money???

Having said that, its not cheap.

I looked up the doc who wrote this article and he is the same one who discovered LDN for Crohn's. I hope he has some more surprises up his sleeve.

I wish I would have known about this years ago - may have been able to save my colon...

hopeful
 
Mr Ziggy,
I hope so too, as I am looking at the possibility of my colon coming out in a few months.

I know in other threads I said I was happy with my bag and was not giving it up, but everytime I think about surgery I get flashbacks to my experience in April, and I get nervous.
 
One thing to keep in mind is that this paper was not an actual research sudy, instead it compared studies already performed. Though useful it is not all conclusive, and you have to remember that the author/authors were able to select whatever studies to compare to prove their points. They wanted to prove that IVIG was successful in treating Crohns and may not have looked or wanted to consider all aspects.


Sorry for this negative view, I'm just used to critiquing and reviewing articles, and have experiencing in performing clinical research and research studies. These are points just to consider.
 
I've heard of IVIG used to treat a few autoimmune conditions. Good article! I'm steroid refractory so this would be great if it every got approved treatment wise.

Thanks for posting!
 
Thanks Niki,
no please do not appologize, it is always good to hear both sides of the issue especially when we are talking about important things like our own wellbeing.

Im big into research too, although I mainly focus on geneology and history lol
lately tho I have been researching info related to my Chron's...

The psych meds I take do not give me many options as far as medications for the chron's so I use the Drug Interaction Checker to check everything..
 
nikimazur said:
One thing to keep in mind is that this paper was not an actual research sudy, instead it compared studies already performed. Though useful it is not all conclusive, and you have to remember that the author/authors were able to select whatever studies to compare to prove their points. They wanted to prove that IVIG was successful in treating Crohns and may not have looked or wanted to consider all aspects.


Sorry for this negative view, I'm just used to critiquing and reviewing articles, and have experiencing in performing clinical research and research studies. These are points just to consider.
Click to expand...

You have a point there, but I read this article thoroughly, and the authors say they reviewed ALL the studies on this topic, and they present the individual summaries of each and every study. So its difficult to imagine they were "selective", particularly considering this is a peer reviewed journal.

Maybe there were selective in what they wanted to look at i.e. the topic of IVIG, but at the end of the day, the quality of their data is as good as the quality of the original studies they are reviewing. And the original data seems like its telling a good story.
 
nikimazur said:
One thing to keep in mind is that this paper was not an actual research sudy, instead it compared studies already performed. Though useful it is not all conclusive, and you have to remember that the author/authors were able to select whatever studies to compare to prove their points. They wanted to prove that IVIG was successful in treating Crohns and may not have looked or wanted to consider all aspects.


Sorry for this negative view, I'm just used to critiquing and reviewing articles, and have experiencing in performing clinical research and research studies. These are points just to consider.
Click to expand...

So look what took me 1 min to find...

http://www.ncbi.nlm.nih.gov/pubmed/17620224

So with the conclusion being read - why not try to raise some awareness to help fund some trials? Or should we still disgard this drug??
 
Just to give people the break down on the pub med study as I see it.

19 Patients with severe crohns disease(measured by CDIA score), that were steroid resistant were in the study. 73.7% of those patients (14) went into remision by week 4 of entering therapy. The mean amount of time that all patients stayed in remission was 200 days!
 
Mr. Ziggy said:
So look what took me 1 min to find...

http://www.ncbi.nlm.nih.gov/pubmed/17620224

So with the conclusion being read - why not try to raise some awareness to help fund some trials? Or should we still disgard this drug??
Click to expand...

The Awareness has been there for years, we can help fund all the trials we want untill the cows come home but here in America Big Pharma and their lobbyists have been the ones blocking this drug from getting the approval it needs for further testing.

Why? Because it works! and the results from just those few patients who were tested show that those people would no longer need to be on the "FDA APPROVED" drugs that they are stuck with.

Logic would say that if something works then it should be allowed to be tested... but sadly, that is not how it works in Washington DC.

Should we disreguard this drug? NO, I was just trying to let you know that it would be an uphill battle but a fight worth fighting especially during an election year where we do have allies we can get in touch with that will stand up against the lobbyists and big pharma,
 
I was just wanting to play devil's advocate, and wanted to look at it in an unbiased, educated light. I have my masters in health policy and this is a topic I'm extremely passionate about. This is the point where we contact those in our CCFA offices and ask for their help in advocacy, to bring up topics, trials and treatments. Best bet right now is to try to find a trial, or a very intelligent physician, and also gain as much knowledge on the subject as possible to try to lever a position on why you wanted to be treated with this. Surprisingly when you talk face to face with health care admin whether they be doctors nurses business people insurance people they are much willing to help you out when you have done all your homework. It's not easy, ive lived on both sides, but got to try to do what you feel is right for you and your health
 
CCFA - what have they been doing about LDN? It has been 5 years since the first study was published...

They raise about $40 million a year. They have about $15 million invested in securities. Who are their big donors? What do they invest in?

I think we ought to be equally skeptical about the motives of those who are out there to "help" us. Every drug company has only our best interest in mind...
 
nikimazur said:
I was just wanting to play devil's advocate, and wanted to look at it in an unbiased, educated light. I have my masters in health policy and this is a topic I'm extremely passionate about. This is the point where we contact those in our CCFA offices and ask for their help in advocacy, to bring up topics, trials and treatments. Best bet right now is to try to find a trial, or a very intelligent physician, and also gain as much knowledge on the subject as possible to try to lever a position on why you wanted to be treated with this. Surprisingly when you talk face to face with health care admin whether they be doctors nurses business people insurance people they are much willing to help you out when you have done all your homework. It's not easy, ive lived on both sides, but got to try to do what you feel is right for you and your health
Click to expand...

Niki,
I understood your intentions and I recognized it was an unbiased study, the problem with the drug is that in the few studies that were done they showed promise. So immediately further testing was blocked ...

I think we would be hard pressed to find a DR who would be willing to conduct tests because of how the system works.. however, as I said earlier, this is an election year and during an election year a vote speaks louder than money to a congressman or sennator who's running for re election...

Hopefull, I have to dissagree with your statement about drug companies only have your best interest in mind... they want to make money, they do not make money when patients go into remission and no longer need to take their meds daily... most of the meds out there either relieve symptoms and pain and will treat your condition as long as you keep taking that particular drug...

the Drug in the article that is the topic of this thread would pose a loss in profits from the drug manufacturers who stand to loose should further testing be allowed... that's why there has been no testing,
 
ok, I did some checking again, the drug name that is on the market is Privigen. The one thiing that pops out is that It can cause problems with the Kidneys, that is the only major thing to watch for. of course it has interaction potentials but the meds that it interacts with are ones that we wouldnt need to be taking with this one.
 
I saw the issue with the kidneys, but according to the British drug guide I have, it says it only happens when they use a certain additive in the finished product Seems to be that the cuplrit is sugar (i.e sucrose). Not all IVIG products contain that.
 
right, but then that would mean if you were to use the IVIG treatment, you would need to cut glucose out of your diet alltogether,

also, Acetamitaphine, Ibruprofen, Asprin, and a bunch of over the counter common meds people take... it seems worth it if you are seeking remission but you gotta be very careful with it...

so people with diabetes for example, wouldnt be able to take it because sometimes they need glucose?

Dispite the risks, it does seem like something that should be available to people with chrons disease. There are risks involved with every medication but the key to avoiding the complications is awareness and to make sure you know what you can and cant take with it.
 
The issue is that the drug contains some sucrose (not all formulations of IVIG do) and when its infused, it can create a problem in the kidneys. But this is infused one off, it is not a continuous infusion.
 
ah, gotcha!
I wouldn't be able to take it because of my Psych meds,
Im very limited as far as what I can take with the Adderall, Celexa and Kolonopin..
 
So I know I'm bringing up a year old thread, but i'm trying to get some insight on this IVIG treatment. I will probably be starting this sometime this week.
I just came off the Remicadee because it was causing lots of complications with my other health issues and I think it has also stopped working for my Crohn's.
It seems I have become resistant to any medications I take.

My dermatologist is the one who is suggesting this for me. After years of dealing with my severe Eczema Herpeticum and not having many options left, she wants to start me on the IVIG.

My only question is how will it work with my Crohn's? Im running out of options for that too. Even on the Prednisone I have been in lots of pain. My GI doesn't think it will do much for the Crohns. But I guess we will find out!
 

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