Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group More Bacterial Culprits & HLA-B27

Hi Kat


Sorry, I wasn't trying to insult anyone.


No. I think that it is great that there are more specialised drugs like the biologics that drastically improve the quality of life for many with AS. My comment was "is it better to start developing drugs to target different parts of the immune system and different genes or should there should there be equal emphasis on research into the environmental aspects?" and that "tinkering with the immune system through highly specialised drugs may still cause unanticipated or undesirable side effects.


Couldn't agree more. I personally do not do any any starch restrictive diet. What I said was that "AS in some people can be significantly influenced and controlled by environmental factors such as diet, supplements, antibiotics." and "some people can eliminate AS through manipulating environmental factors"

I think you're right that as AS patients we should take more responsibility to try and influence the research agenda such as writing letters to government representatives rather than just whinging about it. I'm sure that a lot of researchers (and docs) are simply not aware that some people are having success with some different alternative treatments and that these may offer new directions for research.

Sorry to pick apart your post. I understand that you were tired at the time. It's just that I do try to be careful with wording and understand that you may have misinterpreted (due to strenuous environmental factors) what I was saying so just wanted to clear a few things up.

That is cool.

Many point to the inflammation of the Gut as a cause of AS while others point to the AS as being the cause of the gut inflammation.

It would be interesting to see which comes first. No one has ever done that to my knowledge.

Not any evidence but just a quote from pdf I posted recently about the gut/autoimmune paradigm - https://www.kickas.org/ubbthreads/ubbthre...true#Post392187

"In fact, in clinically asymptomatic Crohn’s disease patients, increased intestinal epithelial permeability precedes clinical relapse by as much as 1 year, indicating a permeability defect might be an early event in disease exacerbation."

Thanks SJLC. There are definitely many reasons to be cheerful. Even in NZ there is research being done - https://iprg.wiki.otago.ac.nz/Main_Page
"Increasingly it is being argued that a compromised intestinal barrier, particularly an increase in the permeability of the intestine, is a necessary prerequisite, not only for Inflammatory Bowel Disease (IBD), but also Coeliac disease, Diabetes Mellitus Type I (TIDM) and Ankylosing Spondylitis (AS). It has been shown for instance that in patients in whom TIDM is anticipated (positive antibodies but no clinical signs) an increased permeability can be observed without obvious intestinal inflammation." - I wish I could log in to read more about it but it won't let me create an account.

Also another researcher at the same university in NZ is looking into the relationship between AS and Crohn's - http://osms.otago.ac.nz/index.php/see-mo...isease-process-

It's good to see that some research is being done into this aspect of the disease to try and establish whether the gut is just another part of the body that is targeted by the disease or whether it may be part of the cause.


That would be cool if you could do that. That would be very interesting to read.

Whilst it is true that biologic drugs like Humira and Enbrel can be strikingly effective, literally giving back life, it is also true that are very lucrative for the pharmaceutical companies that manufacture them. Pharmaceutical companies are increasingly looking to develop so called biopharmaceuticals, very expensive to manufacture, antibody-based treatments. Profit making as well as altruism motivates them.

In her latest novel Lionel Shriver, tackles the issue of the ‘Health System’. The book was motivated by a personal acquaintance, an American, who after being diagnosed with mesothelioma spent the last 15 months of life battling the disease, costing two and a quarter million dollars, and extending life by at best 3 months.

http://www.nytimes.com/2010/03/14/books/review/Cohen-t.html

The author suggests that in the American setting doctors and health professionals have a moral and ethical obligation to do all that is humanly possible to extend and improve life for the ill and injured, regardless of the cost (providing the patient is eligible for Health Insurance). She also argues that for countries with an over-arching Government sponsored health system the moral and ethical questions are largely overcome, or at least avoided. That is because the government makes decisions about what procedures and drugs it can justify supporting. Anything outside these guidelines the patient can only avail themselves of if they themselves have deep enough pockets.

In Australia, the Pharmaceutical Benefits Scheme, makes drugs available (subject to a cheap co-payment) to patients providing their doctor feels they satisfy certain strictly defined criteria. Eligibilty for treatment with expensive treatments is framed by questions of such as the prevalence of the disease in question and thus indirectly the financial drain on the community at large.

In short, as unsavoury as it might sound, a dollar value has to be placed on life.

Regards David

Hello David,

My last job in the States I was an accounting manager for billion dollar company... I recall the President of the company on a visit to our manufacturing plant reflecting on a study that he read, "80% of your medical expenses will occur in you last couple of years... society fights to keep people alive".

I can not recall the exact number of years, nor did he state the reference... but it made me think about the subject a bit. In my fathers case, this is most likely true.

Tim

I appreciate the clarity. Thanks!

Hugs,