TB Cure Maybe Responsible for Spontaneous remissions

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CrohnsLifer

CrohnsLifer

Joined
Nov 24, 2014
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Has anyone else noticed the high spontaneous remission rates (SRR) in the control groups in the Humira et al studies of Crohn's?

Google the studies you'll find SRR's as high as 40% for the control groups in the Humira (etc) studies - other drug studies for e.g. Imuran (Google that too) hover around 7%. Why?

The only answer I've been able to come to is that the TB cure (if you test positive for TB) may trigger an SRR.

Although I did not go on Humira, I took the TB cure - within a month of starting the cure a rectal fissure that had plagued me for years healed and has not returned in the years since I completed the cure.

Even if you discount the SRR by the 7% of the Imuran studies that still leaves a considerable SRR and others like myself may find lesser relief. I don't think there's a down side to the TB cure but check with your doctor to be sure.
 
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I just wanted to add that in many areas, like mine, the TB cure is administered by the local health authority and is free.
 
This would partially give credence to schools of thought that believe mycobacterium and/or mycoplasma are the infectious agent behind Crohn's. Very intersting statistic that you point out, I wonder if it will overlay other anti-MAP remission rates.
 
To Crohn2357:

I believe that Isoniazid is the standard drug used to treat latent TB but there are other issues that may affect treatment, I would suggest following your doctor's direction.
 
To Crohn2357

I sorry to hear that, it seems you and I are in the same boat, although I was lucky to get some relief. It's unfortunate that even with a 40% SRR there are still 60% who are not helped. The TB regimen, I think, is 6 to 9 months, are near the end of treatment?

One note: because of rapid transit problems and constant diarrhea, I opted for the liquid version of the drug (despite the taste) to help with absorption.

My Crohn's is still active and I had chicken pox as a kid, so I'm trying to see if the Shingles vaccine or otherwise treating the chicken pox virus will help. There doesn't seem to be a lot of solid info on line and much of it is contradictory.

I experienced a bout of shingle 20 years ago so - the rash cleared up in a few weeks but the nerve pain went on for several years and even now residual symptoms continue, frequent light rashes and nerve pain. At the time I was being treated with heavy steroid doses but I understand shingles may also occur post Humira treatment.
 
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I afraid I don't know whether it is a case of mimicking TB or the latent TB stimulating the immune system (in some people) causing it to over respond. In addition to the intestinal symptoms I've had immune system over responses like iritis and rashes . I'd have to check my records to see the level but since I took the TB cure the frequency and intensity of my iritis bouts have been much less and much lower. (never thought of it before!!)

I tried to have a conversation about this very topic with my GI guy and a drug company rep but neither wanted to dig into it. It's the main reason I decide not to go on Humira.
 
I took anti-TB medications for 3 months, and then colonscope showed that all ulcers disappeared, and my ESR, CRP all turned to normal levels.
Following that I kept on these pills for 8 months. It was good for the first 4 or 5( I gained some weight and blood tests are ok), but went bad later. Pains, diarrhea more frequent.
So the Dr said my case should not be TB, or it should has been cured.
 
Since we have not heard from a single individual who's CD was cured or even sent into remission by the TB medication or, other than myself, a single individual who has responded positively to the treatment, I'm beginning to consider that the data for biologics is suspect - both for the control group and the biologics medicated group.

It is, of course, a possibility that having achieved "remission" those who would respond positively have left the group.

Or perhaps there are definitional problems? And if the data has only "definitional" validity what does it mean for those considering the biologics route? For example, DavidXU's early success may have been counted but not his subsequent problems. If so, it's a troubling question.
 
Exactly why are all biologic studies in question?
Because one individual (you ) took an unstudied drug as a placebo/treatment for tb --
not even part of a drug trial or study .
If not Please provide a link to the study you were involved with.....

Most studies have to be peer reviewed prior to being published.
They are done on multiple large groups of patients in a controlled setting for a reason.
They are not perfect but one individual persons results are important to the individual but are generally not applied to the masses unless further studies are done.

Case in point
Ds does well on probiotics (prescription strength VSL #3 ).
Cases studies show it's not very effective for individuals with crohns.
But it works with DS's med combo ( Humira, Mtx , formula , vitamin d , iron , physical therapy , etc...) does that mean the studies are in question
Absolutely not
One positive or negative response to a treatment does not and can not undo data from numerous studies.

Studies are used merely as guides for doctors to use when providing treatment plans for individual cases .
I hope you find a treatment plan that works well for you as an individual.
 
my little penguin said:
Exactly why are all biologic studies in question?
Click to expand...

Biologic studies data are in question because of the high rate of spontaneous remissions among their control groups as compared with other drug studies in similar fields (eg Imuran).

my little penguin said:
Because one individual (you ) took an unstudied drug as a placebo/treatment for tb --
not even part of a drug trial or study .
If not Please provide a link to the study you were involved with.....
Click to expand...

I was not involved in any study, nor did I claim to be. There is no need to participate in a study to read the results, come to conclusions, and draw implications, surely the doctors who read them for guidance are not involved as subjects as well in every study.

I am somewhat surprised given your attitude that you didn't simply point to the numerous studies you have reviewed that convinced you of the benefits of biologic and that refute my basic contention. It would have been so much more effective and less spiteful. So it goes.

Maybe you could do it now, out of the numerous peer reviewed studies with which you are familiar, point to say, a half a dozen, that would suffice, I would welcome the enlightenment.

As to the lack of response to my observation, one more possibility comes to mind, perhaps anyone with a dissenting view point has simply been driven from the forum.
 
Can you post where in the study it says that the contol group is given the TB meds? I'm not sure which studies you are talking about so I don't know where to locate that info.
 
Clash said:
Can you post where in the study it says that the contol group is given the TB meds? I'm not sure which studies you are talking about so I don't know where to locate that info.
Click to expand...

Asked and answered -
but for the sake of inquiry, let's assume that a control group received a placebo both at the TB treatment stage and the biologic stage and putting aside my GI's apparent need to mis-lead me, doesn't that make the biologic case even less appealing?

Assumption - no TB treatment - no biologic treatment.

Therefore, in the study referenced elsewhere, 30% of the control group entered spontaneous remission without any medical treatment whatsoever, as opposed to the 3-7% common in other drug studies. Here we are assuming that both the control group and the treatment group were verified CD cases.
The questions this raises just pile one upon the other. Not the least of which is, "if the only differentiating characteristic of the two groups was their treatment, it seems to indicate that 30% of the biologic group didn't need either medication in the first place?" (Check the dire warnings against isoniazid given elsewhere.)

OK. I'm willing to live with it, my assumption that the isoniazid treatment had a salutary effect is wrong. That doesn't change the basic contention or explain it away, in fact, it makes it even more incredible.
 
my little penguin said:
http://www.future-science-group.com/_img/pics/Adalimumab_1.pdf

Much different remission rates here

Tons of articles on medication studies here

http://www.crohnsforum.com/showthread.php?t=43002
Click to expand...

Perhaps you would kind enough to give us a synopsis of the first article, which appears to be a study of studies, not a case study at all.

And, no the remission rates are not "Much different here..."

The water is too muddy to make any clear conclusions, most of the participants have received so much Crohn's related treatment that it's not possible to pull the threads apart. What is cause, what effect, what pure chance, who knows. The problem with many surveys.

Offering a list potentially germane articles (or not) is hardly a list of 6 clear studies that support your position, it's the equivalent of suggesting that you should read the New England Journal of Medicine and look for potentially contradictory articles.
 
I see no link in this thread to a study other than some links other members have posted. I would be interested to read these studies as well so I can better understand where your theory comes from and how it is a placebo group would be receiving TB meds. Is the study you speak of among those listed in our research section?
 
OK guys, last at bat.

This is deteriorating into an all out attack on biologics, and one another. It was never meant to be so and I apologize for my part in it. It has not been helpful to anyone. I stipulate that biologics, like many other drug therapies, has been of great help to many CD patients.

You will notice in the title of this thread the word "may", the intent was to encourage even those not considering biologics to consider taking the TB cure as it may be of some help them, as I believe it was to me. And it is free, at least in my neighborhood.

As I encouraged, in the first go round of this topic, if you're truly interested in the detail data use Google.
 
CrohnsLifer - I'm sorry you feel you're being attacked in this thread, though I don't think anyone intended to do so. I think that the problem maybe a result of the different educational experiences between members. People are asking you for links to studies, and responding by telling them to google for them themselves goes against academic conventions. It's up to the person making a claim or suggesting a hypothesis to provide references.

Obviously this forum is not an academic journal - I'm not sure if the forum has any rules or guidelines about referencing, does anyone know if it does? - but it would be very helpful if you could provide direct links to the studies you have in mind. It can be very time consuming to try to find articles by googling certain words, then trying to skim read abstracts to see if they're relevant, etc., and lots of academic journals require people to pay to access articles if you aren't accessing them from a university and don't have an account provided by a university. Maybe you're an expert at googling and have access to journals that other people don't. If you make a specific claim, it would be very, very helpful if you could cite a specific article that you think supports your claim. Then everyone can be clear on exactly what you're talking about and see if they interpret the study's data in the same way.

And, I'm not suggesting this is the case, but hypothetically, to show why links to articles are necessary, suppose you had made up your claim, or based it on an amateur scientist's blog, or from an article that's no longer online, or which was published ten years ago and has since been disproved. People could spend hours searching journals for something that isn't there.
 
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Point by point.
1. Debate Rules - Need for References
Part of your post is a lecture on the need for someone putting forth a point of view to provide "supporting" links for that view point, yet I don't see a single link or even reference to debate rules by an independent authority, surely you should have provided them if only to avoid irony.

2. Is putting forth an opposing view in need of support?
It seems to me that if you are putting forth an opposing view point, according to your own contentions, you should provide the references that led you to that conclusion.

3. Was it an unexpected attack?
I take it you didn't follow the exchange between myself and baistuff in the thread "What's your theory on how you got Crohn's Disease?" http://www.crohnsforum.com/showthread.php?t=11227. Before you take a look at the exchange, review some other the other responses. As they say, "Just because you're paranoid doesn't mean they're not out to get you."

4. Was that a link?
As you go through the exchange notice that a link was provided and that both Clash and my little penguin were involved in the exchange. And that Clash's post proves he went to the link but doesn't understand the data.

5. To Debate or Not
In any debate I have been involved in, one did not take the opponents statements or references as definitive but did one's own research on the topic, looking for both confirming and contradictory information.

6. I don't need no ... Google!
When I began this thread I took for granted that folks taking drugs such as are prescribed for Crohn's disease had done their research at least into the side effects of the drugs they are taking. Check it out http://www.webmd.com/drugs/2/drug-64713/humira-subq/details/list-sideeffects
http://www.webmd.com/drugs/2/drug-64713/humira-subq/details/list-sideeffects
a less scare but incomplete list of azathioprine side effects can be found at http://www.medicinenet.com/azathioprine-oral/page3.htm#SideEffects
And the other drug's side effects are no less daunting. And surely, they researched the disease itself.

7. What was I thinking?
When I was considering taking a biologic, I was provided with a manufacturer's brochure that laid out the stats, I do not have the brochure despite a serious search, but I do have my notes which you are welcome to dismiss. Naively, I assumed that anyone contemplating such a step as taking a biologic would have been afforded a similar courtesy by their GI. The basic stats were 25% remissions in the control group and 53% remissions in the biologics group and anything I have seen since supported a substantial remission rate among the various control groups, some less, some greater. Like UnXmas in his lesson on debating, I assumed a "common knowledge" that was not present. I thought, again naively, that for some the TB option might be helpful. (As mention, elsewhere I was told that both groups had been treated for TB where needed)

8. The Bigger Issue
I have no dog in this fight and nothing to gain whether folks follow my advice to discuss the topic with their GI or not. But to paraphrase your last paragraph "suppose you " did have something to gain from your claim (you know like the drug companies)..."people could spend hours searching journals for something that isn't there" So where is their library of case studies demonstrating the efficacy of their product, they surely have something to gain. Surely, we should be able to resolve the issues quickly by reference to it. Surely, if it were all so clear...

9. What now?
Personally, I've had more than enough of this topic, you're on your own. I've already made my decision, I took the TB part but not the biologic part. And how you make your decision is your business, if you don't think that your well being is worth wading through a few Google links, I doubt that there is anything I can say that will convince you.

10. Happy New Year.
 
Ahh I remember now. This was in an entirely different thread and you referred to a table about placebo vs humira. I wasn't confused, I just read nothing in the study about the placebo group receiving tb meds. I'll go back and read it again, maybe I missed it.
 
The link provided in that other thread was an overview of a few studies done on Humira. They provide the studies and as I read through them I found no where that the placebo group was provided TB meds. I'm not even sure why a group would be provided these meds since TB testing can determine whether one has TB and the disease itself or the meds used to treat it would make the test invalid as a case study and would fall under a comparable study.

Secondly, if it is a double blind study where no one is aware of who is getting a med and who is getting placebo then patients that had TB would not qualify since it is contraindicated for them to start a biologic.

Lastly, if TB patients can be weeded out by testing before the study begins what purpose would giving any group the TB med serve. Why? What is providing the TB med to people who are TB negative in a study about Humira going to offer. If your theory is correct then it would only hurt the endpoints of the study not bolster humira numbers so why would they even do that?
 
I was genuinely trying to be helpful you know. I'm also female, btw.

I didn't provide references in my post. Part of referencing is knowing when references aren't necessary.

I take it you didn't follow the exchange between myself and baistuff in the thread "What's your theory on how you got Crohn's Disease?" . Before you take a look at the exchange, review some other the other responses. As they say, "Just because you're paranoid doesn't mean they're not out to get you."
Click to expand...

Not everyone reads every post on this forum (despite what some of our post counts might suggest :p ). If you've been assuming throughout this thread that everyone reading is familiar with what was posted on a different thread, a link to that thread would have been helpful.... and I don't think you need to be familiar with academic conventions to think of that, common sense should suffice.

When I began this thread I took for granted that folks taking drugs such as are prescribed for Crohn's disease had done their research at least into the side effects of the drugs they are taking. Check it out http://www.webmd.com/drugs/2/drug-64...st-sideeffects

a less scare but incomplete list of azathioprine side effects can be found at http://www.medicinenet.com/azathiopr...tm#SideEffects
And the other drug's side effects are no less daunting. And surely, they researched the disease itself.

When I was considering taking a biologic, I was provided with a manufacturer's brochure that laid out the stats, I do not have the brochure despite a serious search, but I do have my notes which you are welcome to dismiss. Naively, I assumed that anyone contemplating such a step as taking a biologic would have been afforded a similar courtesy by their GI. The basic stats were 25% remissions in the control group and 53% remissions in the biologics group and anything I have seen since supported a substantial remission rate among the various control groups, some less, some greater.
Click to expand...

Not everyone with Crohn's has been prescribed every medication used to treat Crohn's, believe it or not. I'm not planning on getting TB either. But I was interested in this discussion despite not having or planning to take every medication mentioned.

(And if you expect everyone to have the brochure to hand, why have you lost yours?)

if you don't think that your well being is worth wading through a few Google links, I doubt that there is anything I can say that will convince you.
Click to expand...

My wellbeing is worth spending some time googling.... but not on the basis of claims made by some random person on the Internet. If the random person had provided links and references, I would be able to decide whether his claims were worth spending further time researching.

You don't have to provide references in your posts when you talk about studies you remember reading, or links to other threads that you expect people to have read, or follow academic guidelines, if you don't want to. But if you don't think what you have to say is interesting or important enough to bother providing some links, don't be surprised if no one takes you seriously.
 
UnXmas said:
I'm not sure if the forum has any rules or guidelines about referencing, does anyone know if it does?
Click to expand...

I do - the forum rules specifically state:
*Here on the forum we share facts with credible sources, personal experiences and offer support. Posts that deter a member from getting treatment suggested by their medical practitioner that they may need is not allowed. Such posts may be subject to editing and you will receive a warning.
Click to expand...

So it's not written in stone that things must be linked with a source, but it certainly is highly encouraged. For anyone interested, the link to the full forum rules are here:
http://www.crohnsforum.com/faq.php?faq=new_faq_item#faq_new_faq_item3
 
KG, a 42-year-old Indian male, presented in 1995 with abdominal pain exacerbated by eating, anorexia, and weight loss. He had travelled to India 5 years previously, and he was known to have beta thalassaemia trait. There was no history of fevers or diarrhoea. He remained afebrile during his inpatient stay. Gastroscopy, colonoscopy, small bowel meal, and barium enema were normal. Early morning urine samples, and Mantoux test, did not demonstrate evidence of tuberculosis. Furthermore, bone marrow biopsy showed leukopenia and thrombocytosis, with no organisms present on culture. His initial blood tests confirmed a thrombocytosis with a platelet count of
6 4 5 × 1 0
9
/L. His haemoglobin was 12.0 g/dL, and his ESR was elevated at 64 mm/hr.

In our experience, the diagnosis of tuberculous enteritis frequently remains challenging despite the investigations described above. Several authorities recommend initiating antituberculous therapy if there is a strong clinical suspicion of tuberculosis despite nondiagnostic histological or bacteriological studies [5]. Whilst laparoscopy and mesenteric sampling have a higher sensitivity, these patients frequently respond rapidly to medical therapy and, thus, laparoscopy is usually considered if improvement is not seen after two weeks. In this case, due to the patient’s marked systemic inflammation, Indian origin, and lack of evidence for alternative diagnoses such as lymphoma or inflammatory bowel disease, he was commenced on empirical antituberculous treatment with rifampicin, isoniazid, ethambutol, and pyrazinamide. He gained weight rapidly, and his blood tests returned to normal. He received eight and a half months of treatment.

He relapsed the following year with abdominal pain, vomiting, and fever. CT of the abdomen demonstrated an abnormal terminal ileum and caecum, suggestive of tuberculosis, inflammatory bowel disease, or lymphoma. A small bowel meal confirmed an irregular thickening in the terminal ileum. However bone marrow aspirate and peripheral cultures proved unremarkable, with no evidence of mycobacteria. A diagnostic laparoscopy was recommended, but the patient declined this procedure. A further course of antituberculous therapy with the same regimen again provided a dramatic therapeutic response. He received a year of treatment.

Five years later, a further recurrence of symptoms occurred. He was worked up in an identical fashion with colonoscopy, abdominal CT, and barium meal and follow-through. The only positive finding was on CT, which demonstrated a featureless terminal ileum, despite the wall being of normal thickness with no fat stranding. On this occasion the patient again declined diagnostic laparoscopy. Again, he responded to empirical antituberculous therapy, although a laparoscopy was not performed. A further three years later, he again presented with a recurrence of his symptoms, CT showed thickening of the terminal ileum (Figure 1), and colonoscopy demonstrated multiple erosions in the terminal ileum (Figure 2). Biopsies did not demonstrate granulomata but highlighted patchy acute and chronic inflammation with inflammatory cell infiltrate consistent with Crohn’s disease. Prolonged microbiological culture of ileal specimens was also negative. On this occasion, a course of steroids for Crohn’s disease was prescribed and, again, he made a dramatic recovery.
Click to expand...

Link
http://www.hindawi.com/journals/crim/2010/695461/

From:


Case Reports in Medicine
Volume 2010 (2010), Article ID 695461, 4 pages
http://dx.doi.org/10.1155/2010/695461
Case Report
Suspected Intestinal Tuberculosis Might Be Crohn's Disease
Semiu Eniola Folaranmi,1 Gautam Mehta,2 Debasis Datta,3 and Greg Holdstock3



Here the individual was thought to have TB
And treated as such but it kept relapsing over the years
Until he was finally dx and treated for crohns.

Not on topic but interesting
 
CrohnsLifer said:
And the self-righteous inherit the forum.
Amen
Click to expand...

CrohnsLifer - I'm sorry for the sarcasm in my last post, that was impolite of me, but I think the point I was making still stands: people don't know where to find the data and studies you keep referring to. We haven't all been provided with the medication brochures that you have, and we don't know where to find the articles you have in mind - we don't know what articles you're talking about.

I had a quick look at the discussion on the "What's your theory on how you got Crohn's disease?" thread, and it seems you had the same problem there: people are asking you to tell them where you're getting your data from, and you keep telling them to google it for themselves.

I'm finding it hard to understand why you are so determined to keep the sources of your information to yourself. People keep asking you and you refuse to tell them, and I really can't think of a reason why you'd do that. Maybe you believe that it's incredibly simple for everyone to find the data for themselves through google, but since that's obviously not happening, isn't it also incredibly easy for you to provide some links, or the titles of the studies you've been reading? Then maybe you'll get to have a proper discussion about your theories.
 
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Slightly off topic but thought I'd post it here for someone reading up on TB comes across this thread. Researchers at Johns Hopkins have found that co-administering Verapamil can reduce treatment times and lower required dosage levels of bedaquiline, a toxic drug required for treatment if multi-drug resistant TB. Something about how it disrupts the bacterial efflux within cells increasing effectiveness of antibiotics. Will see how the anti-MAP studies pan out but if mycobacterium prove out to be culprit maybe Verapimil can help increase tratment potency there.

http://m.hopkinsmedicine.org/news/m...berculosis_drug_without_compromising_potency_
 

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