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MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
I've never spoken on this board about a disease called ankylosing spondylitis. "Ankylose," to fuse. "Spondylitis," inflammation of the spine. Thus, ankylosing spondylitis is an inflammatory condition of the spine that causes progressive pain and stiffness until the vertebrae fuse with one-another.

The disease affectes mainly young men in their late teens to early 30's. Symptoms include burning low-back pain that is worse in the morning and that responds well to non-steroidal anti-inflammatory drugs such as ibuprofen and naproxen. The neck may become especially stiff and sore, as well. In some patients, the inflammation may extend into the hips and shoulders, again causing progressive stiffness and and pain.

Ankylosing spondylitis is an autoimmune condition, or a condition in which the immune system accidentally misrecognizes a certain body tissue (the vertebrae, in this case) as foreign and attacks it as if it were infected with a virus. It is very similar in many ways to another autoimmune condition you may have heard of called rheumatoid arthritis in which the joints between the peripheral bones (elbows, hands, ankles) are the targets of the inflammation, rather than the vertebrae.

Ankylosing spondylitis is a rare disease affecting between 15-30 people per 100,000.

But I was diagnosed with it at age 16 and have lived with chronic pain ever since. I have taken a powerful non-steroidal drug called indomethacin, which is like taking 2000 mg of ibuprofen every day! (Normal single adult dose is 200-400mg). I have taken prednisone, a potent steroid that causes weight gain, bloating, and endocribe disturbances, among other side-effects. I have taken huge amounts of fish oil (which sometimes help inflammatory conditions). And through it all, I have pushed on. I went to college, to medical school, to raves, to swim meets. I have gone through life in chronic pain.

Ankylosing spondylitis had no effective therapy until earlier this year when it was discovered that a new drug might be the first drug to be able to stop the disease in its tracks. The drug targets a molecule in the body called Tumor Necrosis Factor-alpha, TNF-alpha, or TNF, for short. TNF is a molecule that causes inflammation, anemia, fatigue, and wasting.This new drug takes the natural receptor protein for TNF and makes it float around in the blood stream, where it binds to TNF and prevents it from causing inflammation.

The results of studies with this drug have been impressive. The patient injects this drug under his or her skin once or twice weekly. There are almost no side-effects except for an increased risk of infection with tuberculosis. At my next doctor's appointment, I think I am going to specifically ask to go on it as I do meet the clinical criteria listed as indications for therapy.

Thanks to this amazing discovery and the work of dedicated scientists and doctors, I stand a chance of living my first totally pain-free day in over 10 years...in just a few weeks.

This new drug is called Enbrel (etanercept).

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


Pink...?BRONZE Member
Mistress of Pink...Multicoloured
6,140 posts
Location: Over There, United Kingdom


Posted:
Wow! that's great!

hug
I really hope they let you have it! I don't see why they wouldn't!
ubblove

Never pick up a duck in a dungeon...


DurbsBRONZE Member
Classically British
5,689 posts
Location: Epsom, Surrey, England


Posted:
Cool Mike - I wish you a happy pain-free day biggrin

My sister works in pharmecuticals and I'm always amased at the progress these guys are making (Not my sister, she's in accounts...)

It really does give hope for the future with regards to other autoimmune conditions - AIDS springs to mind.

Not sure I could cope with needles though *shivers* But then, I guess you're kind of used to them, being a doctor and all wink

Hugs
hug

Burner of Toast
Spinner of poi
Slacker of enormous magnitude


Psiboing
529 posts
Location: Body in Seattle - soul still in bristol :)


Posted:
Mike, i hope it works and that you'll be pain free for the rest of your life!

I work in biochemistry and often it takes literally 15 years or more (and billions of pounds) to go from a potential drug target (like TNFa) to a non-toxic, soluble, metabolised, absorbed etc.. etc.. drug which works... but the reward is huge for the people suffereing .. unfortunately, despite this, funding agencies are often reluctant to fund such risky projects and/or stop funding if nothing viable comes out after a few years.. it's a shame but we live in a bastard capitatilstic world ... frown .. if there were infinite resources ultimately a cure for everything would be found ... but with things like HIV its a damn difficult thing to do.

Anyway, hug for you, hope everything goes well,

Mike smile

spritieSILVER Member
Pooh-Bah
2,014 posts
Location: Galveston, TX, USA


Posted:
Yay for you! Relief from pain is a very good thing. hug

It seems that TNFalpha is involved in many things disease-wise. I know I have been looking at the results of RSV (a lower respiratory disease that can be lethal to children under 2) and how TNFalpha reacts to other things and ultimately causes changes. It is one of the proteins that is changed by disease in that as well...We are now where near drug status with it (just a med school), but it is interesting nonetheless.

GottaLoveItSponge
883 posts
Location: Stevenage


Posted:
I hope it gives you more freedom to push on some more, you amaze me ubblol
Take care xx

Monkeys monkeys and bananas


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Psi, the process of drug development is awful, I agree. But it has allowed us to come out with some incredibly safe and effective drugs. The sorts of standards of safety that the public is accustomed to have risen dramatically. People now complain when a side-effect occurs in as few as 0.01% of patients on a drug. Compare this to older, more familiar drugs, such as aspirin or prednisone where side-effects occur in the majority of people.

In the early and mid-80's, when these so-called "cytokines" like TNF and the interleukins were first being characterized, they were mere curiosities. There was no application to the research. PCR was still in its infancy. Gene cloning was still very difficult to do, to say nothing of site-directed mutagenesis.

And yet....

Non-Https Image Link

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


MiGGOLD Member
Self-Flagellation Expert
3,414 posts
Location: Bogged at CG, Australia


Posted:
umm, one thing i have heard about, not sure it would help with your disease, but apperently its really close to a wonder drug is called collodial silver. i seem to remember it being the silver molecules joining onto the water molecules or something. Like i say, not sure if it will help, or if you have heard and/or tried it, but its an idea.

"beg beg grovel beg grovel"
"master"
--FSA

"There was an arse there, i couldn't help myself"
--Rougie


Xopher (aka Mr. Clean)enthusiast
456 posts
Location: Hoboken, New Jersey, USA


Posted:
MiG (and Mike) don't take Colloidal Silver. It can cause a horrible disfiguring disease (imagine patchy black tattoos all over).

"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations


Psiboing
529 posts
Location: Body in Seattle - soul still in bristol :)


Posted:
Lightning, i totally agree, the development in the molecular biosciences is breathtaking .. and there is still *so* much to be discovered, we're only just starting to comprehend the workings of even 'simple' organisms like unicellulars, never mind multi cellular organisms...

Mike

MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Colloidal silver is touted as a natural alternative for antibiotics. However, a bunch of studies have been done in which common pathogenic bacteria are grown on media with colloidal silver. There is no evidence that the colloidal silver has any antimicrobial effects at concentrations that might be seen if someone was taking colloidal silver. At very high (very toxic) concentrations, it may be antimicrobial to certain species of microbes that are naturally-occuring flora in the body, anyways (like Candida and E. coli)



However, there are multiple reports in the literature of human toxicity due to colloidal silver.



Gold salts have been used for rheumatoid arthritis, but they don't work in ankylosing spondylitis. And they have nasty side-effects, too.
EDITED_BY: L i g h t n i n g (1087935899)

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


Xopher (aka Mr. Clean)enthusiast
456 posts
Location: Hoboken, New Jersey, USA


Posted:
Lightning, it's worse than that. Colloidal silver can cause Argyria, a disfiguring disease where the skin turns gray or black (not a nice human black, no, a rotting-corpse kind of black). It's irreversible; even dermabrasion doesn't solve the problem completely, since most of the silver is too deep in the skin.Here's a link to the website of a woman who got argyria from colloidal silver.

"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Argyria is a cosmetic problem. Bad, but she won't die from it.

On the other hand, check out this abstract.

"The authors report a case of a 71-year-old man who developed myoclonic status epilepticus* and coma after daily ingestion of colloidal silver for 4 months resulting in high levels of silver in plasma, erythrocytes, and CSF. Despite plasmapheresis, he remained in a persistent vegetative state until his death 5.5 months later. Silver products can cause irreversible neurologic toxicity associated with poor outcome."

(Mirsattari SM "Myoclonic status epilepticus following repeated oral ingestion of colloidal silver." Neurology 27-APR-2004; 62(8): 1408-10)

Myoclonic status epilepticus is a seizure with muscle contractions that does not stop after 30 minutes. Status epilepticus is a medical emergency and can be lethal if not treated.

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


Xopher (aka Mr. Clean)enthusiast
456 posts
Location: Hoboken, New Jersey, USA


Posted:
Now THAT had to be at the megadose level, right? Wow.

At any rate: colloidal silver bad.

"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Yup. And I want to state that I am not one of those medical buttplugs who runs around saying that no natural or complimentary therapy works. I have just about every single adult patient of mine on 2-4 grams of fish oil per day. I use it in high doses (with modest effect) for my ankylosing spondylitis.

I have used saw palmetto for benign prostatic hypertrophy, gugulipid for high cholesterol, black cohosh for menopause, etc. etc. etc.

But you should NOT be taking things like this unless you are doing so under the supervision of a licensed professional who actually has training in human physiology.

A few rules to remember about claims about alternative products.

1) There is no cure for AIDS.

2) ANYTHING with any sort of biological effect on a disease process WILL have at least one documentable side-effect. If they claim "no side-effects!" move on. Other than fishy belching, fish oil may be the only exception to that rule.

3) If it claims to treat more than 20 common conditions, it doesn't and it won't. Again, fish oil is the one exception here.

4) Testimonials are worthless in the absence of controlled data.

5) Never confuse "natural" and "harmless." Poison ivy, hemlock, and deadly nightshade are all natural. So is morphine, come to think of it.

6) You CAN overdose on vitamins. Especially A, C, and D.

Be careful, OK? The nice thing about pharmaceuticals is that they have to do studies to find the adverse effects. Believe me, if aspirin came up for FDA review today, it would never make it. Not safe enough.

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Quick update.

I just gave myself my first injection today!!!! Let's hope it works!!!!

biggrin ubbrollsmile

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


Xopher (aka Mr. Clean)enthusiast
456 posts
Location: Hoboken, New Jersey, USA


Posted:
[crosses fingers]

"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
I woke up this morning, got out of bed, brushed my teeth, took a shower, and it wasn't until I was toweling off that I realized...

No pain. For the first time since I can remember, I woke up with no pain, no stiffness, nothing.

Now, excuse me. I have a life to go and live. biggrin

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


ado-pGOLD Member
Pirate Ninja
3,882 posts
Location: Galway/Ireland


Posted:
Hi Lightning



I know you dont know me from adam but I am sitting here at my desk smiling for you.



I wish you the very best smile



Aidan

Love is the law.


Kapura MataaroHoP resident longboarder.
195 posts
Location: Tasmania, Australia


Posted:
g'day lightning, good to hear- i have rheumatoid arthritis; but luckily for me its not as bad as it could be..Will your treatment be another alternative for rheum? and why doesn't the rheum treatments work for ankylosing spondylitis? apart from the treatment probably being worse than the condition....

"surely a longboarding fire spinner should have no trouble getting some action!"- NYC....


DeepSoulSheepGOLD Member
Carpal \'Tunnel
2,617 posts
Location: Berlin, Ireland


Posted:
That's wicked man good for you and all other sufferers. Try this one out ---> bounce

I live in a world of infinite possibilities.


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Kap-man,

Enbrel was originally approved for the treatment of RA. In fact, for RA, it works best when combined with methotrexate. But AS is a different disease than RA, even if it is similar, so it's responses to treatments is similar, but different.

This is amazing. AMAZING... This is the best high I have ever felt.

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
So far today I:

*Stood for 10 minutes without having to lean on anything

*Sat through a 2 hour exam with no discomfort

*Sneezed without pain

*Biked to the hospital first thing in the morning with full energy

*Jumped out of a chair without having to stop for a moment to straighten my posture

*Laid flat on my back on my boyfriend's bed for a half hour, talking to him, then rolled over and kissed him good-bye without grimacing first, hopped off the bed, and walked out of the room.

*Slouched on a couch while studying, and then got up without any hesitation or grunting.

*Sat in a straight-backed chair with good posture.

*Twisted around in that same chair to greet a friend who walked in behind me.

*Bent over at the waist and poked my head around a doorway without having to support myself by putting my hands on my thighs.

*Grinned like an idiot all morning because I appreciate the little things in life today.

Do you have any idea how good my spinning is going to get? biggrin

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


Fine_Rabid_DogInternet Hate Machine
10,530 posts
Location: They seek him here, they seek him there...


Posted:
bounce bounce2 bounce bounce2 bounce clap

Horray for Lightning!

The existance of flamethrowers says that someone, somewhere, at sometime said "I need to set that thing on fire, but it's too far away."


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
Ok, Day #2. Just a teeeeny hint of low back pain this morning. I was expecting this, of course, as the drug levels fluctuate until I've had several doses.

I find this all very fascinating...

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


DomBRONZE Member
Carpal \'Tunnel
3,009 posts
Location: Bristol, UK


Posted:

Hope you're doing well using yourself as a guinea pig. Glad to hear it's working! smile

Written by: Lightning

fish oil may be the only exception to that rule.



Excessive fish oil is linked to some cancers. Too much of anything is bad for you.

MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
What cancers? Where did this info come from?

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


Xopher (aka Mr. Clean)enthusiast
456 posts
Location: Hoboken, New Jersey, USA


Posted:
YAYYYYYY!

"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations


Xopher (aka Mr. Clean)enthusiast
456 posts
Location: Hoboken, New Jersey, USA


Posted:
Not about the cancer stuff. About the day of moving, and waking without pain that time, and like that. And your spinning is going to get FABULOUS.

"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations


MikeGinnyGOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA


Posted:
I just had sex without pain for the first time ever.

You have to realize that I consider sex to be a major indicator of health. I ask all my adult patients about it. ("Are you satisfied with your sexual function? Do you have any questions or concerns about sex?") Healthy adults should be having sex on a somewhat regular basis, as a general rule. I don't care how old they are. If they aren't (and there isn't a good reason), then I get concerned.

So to me, both as a clinician and as a human being, this is...HUGE.

-Mike

Certified Mad Doctor and HoP High Priest of Nutella



A buckuht n a hooze! -Valura


spritieSILVER Member
Pooh-Bah
2,014 posts
Location: Galveston, TX, USA


Posted:
Yay for you !!! does a little happy dance

Now, why are you on here on a Friday night telling us about it? Shouldn't you still be in bed next to your guy?

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