Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; epitope mapping

Hi all,

I heard of some new treatment in RA and i think this is what my new ALT-doc (no reumy) mentioned as future therapy-plan.

http://www.clinicaltrials.gov/ct/gui/show/NCT00000435?order=5

This about re-educating your immune cells, so a different approach then supressing them. So this is like EPD but NOT the same.

another link:
http://medicine.ucsd.edu/albani/raphaseiitrial/

anyone already heard of this treatment??

Arjan

Hi,

not too much enthousiasm about this i notice. I'd like to point out that our diet is really nice, but does not cure you, unless in exceptional cases.
You can get well on the diet, but you keep carrying the AS-bomb.
This one might hold a cure, will make the diet optional. Everyone needs to make an estimation of the risk involved and the benefits to gain.

more info:
short:
http://www.hopkins-arthritis.som.jhmi.edu/acr_hilites/acr_hi_ra_epit.html
http://arthritis-research.com/content/2/3/203
large and scientific
http://www.acponline.org/journals/annals/01aug95/aarheum.htm

Arjan

Well Arjan this just might get the pharmy companies interested, and if someone comes up with an antigenic peptide for AS to be taken orally, I'll give them your name as a volunteer for the trial. Maybe for a spot of genetic engineering to? As for me, I'm happy to starve my antibodies of the epitopes by dieting. 'Cos I'm putting on so much weight that if I started back on the chips and burgers I'll look like Billy Bunter.

They wear ''their brains in their bellies, and their guts in their heads,'' as Agrippa taxed some parasites of his time, rushing on their own destruction, as if a man should run upon the point of a sword, they eat till they burst ...

Bilko I do not understand your reluctance. Why do you consider this the same as immuno-suppression? i think it is not. The drugs are temporarily and after treatment no dependencies. My doc talks about 4-5 injections in a 3 year period.

I am of course also reluctant to anything the farms produce, and maybe I miss something here ... can you explain your opinion??

Arjan

Arjan,

you misunderstand me, I made no comparison with immuno-suppression. As I understand one of your links they will have to make a pill with pieces of protein with the same molecular structure as, presumably, HLA B27. I can swallow that, (not the needles), but not being genetically rearranged suggested by another of your links (and something John dreams about). But you are certainly right in thinking I wouldn't swap the diet for immuno-suppressants; I am watching the growing enthusiasm for Enbrel with a macabre fascination. I was limping around when phenylbutazone was all the rage ........ But I am old and you are young / And I speak with a barbarous tongue.


They wear ''their brains in their bellies, and their guts in their heads,'' as Agrippa taxed some parasites of his time, rushing on their own destruction, as if a man should run upon the point of a sword, they eat till they burst ...

Edited by bilko on 07/17/03 10:09 AM (server time).

I had a script for Enbrel and insurance was paying for it. After 3 weeks I dumped it and went NSD. I'm interested in your macabre fascination with Enbrel. Any predictions on where my health would have been in ten years if I had continued its usage? I'm sure alot of shooters would like a mirror into their possible future.

Thanks,
Allan

I share bilko's facination as i believe blocking an immune response is NOT the way to handle your body.

The fact with TNF is: this blocks the immune-reaction better then cox2 or cox1: but blocking bypasses the the bodies own will, and I believe the body will not tolerate this in the long run.

So it will go wrong, but HOW EXACTLY this will go wrong is the subject of my facination. But maybe bilko has other reasons to get facinated.

regads,

Arjan

I poked around the net and found some laymen to talk about it.
Cyclooxygenase Enzymes (COX-1 & COX-2)
What is a COX-2 inhibitor and why is inhibiting COX-2 important?

Cyclooxygenase (COX) is an enzyme naturally present in our body. Scientists discovered there were two forms of this COX enzyme:
1) COX-1 is produced widely throughout the body and is involved in the regulation of day-to-day cellular and metabolic activities such as maintaining stomach lining integrity, regulating blood flow within the kidneys and balancing platelet function. COX-1 is present in the body always and should not be inhibited.

2) COX-2 is an enzyme that is necessary for inducing pain. The COX-2 enzyme is present in our bodies, ideally on a limited basis; however, factors such as diet, trauma, and injury can influence COX-2 production. When COX-2 is produced on a continual basis, constant pain ensues. Therefore, inhibiting COX-2 is an option for muscle pain management.

What causes COX-2 to get out of control?

The consumption of high amounts of saturated fat and the omega 6 unsaturated fatty acids and a consumption of low amounts of omega 3 fatty acids can give rise to the production of COX-2. In a state of ideal dietary balance, our Omega 6 to Omega 3 ratio would be 1:1, certainly no worse than 2:1. Unfortunately, because of our modern dietary indiscretions and the general unavailability of wholesome food, most Americans have an Omega 6 to Omega 3 ratio in the range of 10:1 to 20:1! Simply put, by continually having an unbalanced fatty acid intake we are giving the COX-2 enzyme the raw material to create fire, but not the raw material to put out the fire. It's not that COX-2 is a "bad" enzyme. To the contrary, we need it for life. It's just that our diets and the stresses we live in today create way too much COX-2, and we don't use the resources to put out the fires.

Enbrel on the other hand

Our body produces the tumor necrosis factor (TNF) (a type of cytokine in the inflammatory process) as a means of defense against various diseases (among those being the serious diseases listed below). They are held at bay.
It is believed that rheumatoid arthritis (RA) and Crohn's disease are diseases, on the other hand, which are caused by TNF. Enbrel inhibits TNF production by binding to the TNF cell receptors and blocks interaction.
It is therefore quite explicable how the serious diseases, which might become the basis for a lawsuit, arise. The drugs purposefully inhibit the TNF, and the body loses its immunity against the diseases, the "seeds" of which are lurking in the body. The drug allows the side effects to arise, which can cause life-threatening and possibly fatal outcomes.
The mechanisms of action for the adverse drug reactions can be grouped into the following categories
Infections;
Immunogenicity; (auto-immune diseases)
Delayed hypersensitivity; and
Infusion-related reactions

Enbrel has been reported to be capable of allowing the following very serious diseases to appear in users:
1.Lymphoma and other cancers;
2.Tuberculosis, especially extra-pulmonary and miliary tuberculosis;
3.Opportunistic infections, such as histoplasmosis, listerosis, aspergillosis, 4.coccidiomycosis and pneumocystosis, sometimes manifested as life threatening sepsis and abscesses;
5.Multiple sclerosis, optical neuritis, transverse myelitis, and other neurological diseases;
6.Aplastic anemia and other pancytopenias;
7.Serum sickness, which is a delayed hypersensitivity reaction which can be quite severe, and includes rashes;
Lupus.

Pick a poison, I'll stick with the cox-2 inhibitor Celebrex so I can Celebrate!
Allan

Allan,

my interest is psychological as well as technical. When they started testing Enbrel some time ago this forum was relatively quiet, and the diet was not very fashionable on the general forum. At that time Betty posted here asking 'NSD or Enbrel?'; her success with the diet had been mixed and she was delighted to get on an Enbrel trial and not worry about what she ate.

Since then there has been something of a snowball affect with the diet and it is even being recommended to newbies on the general forum by people who don't even follow it themselves. In the meantime Enbrel has been cleared for general use and more and more kickASers are getting their shots. Will interest in the diet hold up? Will it only be popular with those who are wary of drugs and want to control their own health?

I've just read a post by Evelyn quoting M A Khan talking about the role of TNF-alpha in the pathogenesis of AS, RA etc. This could mislead the technically innocent, which is all of us. It could be misread as a suggestion that misbehaviour of this cytokine is implicated as a cause of AS. There is no evidence for this, and even M A Khan will not suggest (I hope) that TNF-alpha is implicated in the etiology of the disease. In the long run this drug will cause an increase in other diseases and cancers in the population that takes it; how big the risk is will take some years to become clear. In the meantime will our snowball melt?


But I am old and you are young
And I speak a barbarous tongue

My snowball has melted somewhat recently. I'm still on the diet, but think I'd have to call it LSD. I've gotten to where I'll eat a gram or 2 of starch using your carbs-sugar=starch. I still read labels and try not to eat anything that I know is bad like modified food starch, wheat germ, or basically anything that looks like it has grains or starch in it. But like Bryers ice cream has sugar, milk, and heavy cream. Carbs 14g sugars 13g or something like that. Natural salad dressing has no grains, but maybe 4g carbs and 3g sugars or red cabbage 4g carbs and 3g sugars. The big one is OJ which the carton says is like 24g carbs and 23g sugars. I tend to think that the OJ will mostly get absorbed as nutrients before anything else feeds on the sugars in it. I feel like I'm doing ok with the foods I'm eating compared to what I use to eat. No fried, no breads, no pasta, no rice, no oatmeal, no cake or pie. Actually the only prepacked things I eat are ice cream(1g starch), natural salad dressing(1g starch), stubbs barbque sauce(1g starch), red cabbage(1g starch), 100% fruit jelly(1g starch), and sardines in louisana hot sauce(0g starch). None of these have any grains or bad things except the sugar which doesn't seem to be that high. I don't eat them all everyday either. Hmm, and listing them I seem to be eating better then I had thought. Wonder why I still have to take a celebrex everyday. I was down to 2 aleves every 4 days and then I went on vacation and have been on 1 celebrex a day every since. I suppose I may have to look at cutting back on the sugars and milks like I was doing. Just don't really like weighing under 170 and wonder if that is more unhealthy then taking a pill a day. Reduced meds is a good thing so maybe I should be happy with that. By the time I figure out what I should have done it will be to late so I just hope I'm stumbling in the right general direction.

Allan