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HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
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).
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
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
I did spend last night with him.
And woke up without pain for the third day in a row. This morning, it didn't even occur to me that it was strange. The euphoria is starting to wear off a bit, which is nice because I think people are sick and tired of hearing about it.
I give myself my second injection tomorrow morning.
I did spend last night with him.
And woke up without pain for the third day in a row. This morning, it didn't even occur to me that it was strange. The euphoria is starting to wear off a bit, which is nice because I think people are sick and tired of hearing about it.
I give myself my second injection tomorrow morning.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
member
7 posts
Location: Vermont, USA
7 posts
Location: Vermont, USA
Posted:
Hi Mike,
Have you ever read "Anatomy of an Illness" by Norman Cousins? It's a book about how Cousins cures himself from ankylosing spondylitis through laughter and Vitamin C (among other things). It was written in1979 so it's kind of a classic in the world of alternative medicine. I just finished reading it and so it was interesting to read your messages.
By the way, congratulations on your recovery.
Melanie
Hi Mike,
Have you ever read "Anatomy of an Illness" by Norman Cousins? It's a book about how Cousins cures himself from ankylosing spondylitis through laughter and Vitamin C (among other things). It was written in1979 so it's kind of a classic in the world of alternative medicine. I just finished reading it and so it was interesting to read your messages.
By the way, congratulations on your recovery.
Melanie
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
Oh, I've done high-dose Vit C. But there's no cure. Remission, sure, but no cure.
And, in spite of that, I stood, on my own two feet, without leaning on anything, for 45 minutes tonight. Damn...
Next shot tomorrow morning.
Oh, I've done high-dose Vit C. But there's no cure. Remission, sure, but no cure.
And, in spite of that, I stood, on my own two feet, without leaning on anything, for 45 minutes tonight. Damn...
Next shot tomorrow morning.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
SILVER Member
sleeping with angels
508 posts
Location: anaheim CA usa
sleeping with angels
508 posts
Location: anaheim CA usa
Posted:
i hope it works for you my friend and i wish you the best
god bless
i hope it works for you my friend and i wish you the best
god bless
SLEEP WITH ANGELS muckieha
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
Good morning. I just woke up in (what I think is) complete remission about 8 hours after my second shot.
How are you today?
Good morning. I just woke up in (what I think is) complete remission about 8 hours after my second shot.
How are you today?
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
member
7 posts
Location: Vermont, USA
7 posts
Location: Vermont, USA
Posted:
I may have used the word "cure" too hastily, but still the book is worth a read.
Glad to hear you're doing so well!!
I may have used the word "cure" too hastily, but still the book is worth a read.
Glad to hear you're doing so well!!
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
So yesterday, Patrick and I went to the mall. We spent about 4 hours on our feet. (He was "Queer Eye for the Gay Guy"ing me)
At the end of the day, my low back felt a bit stiff and tight. My feet felt worn, and my calves were sore.
And, I'm loving it! I am actually feeling normal low back fatigue. This isn't the twisting, cramping, searing pain in the middle of my back that I'd normally feel after a day on my feet. This must just be what people normally feel like after being on their feet for 4 straight hours.
I get normal, "healthy person" pain!
Is it sick to delight in pain?
So yesterday, Patrick and I went to the mall. We spent about 4 hours on our feet. (He was "Queer Eye for the Gay Guy"ing me)
At the end of the day, my low back felt a bit stiff and tight. My feet felt worn, and my calves were sore.
And, I'm loving it! I am actually feeling normal low back fatigue. This isn't the twisting, cramping, searing pain in the middle of my back that I'd normally feel after a day on my feet. This must just be what people normally feel like after being on their feet for 4 straight hours.
I get normal, "healthy person" pain!
Is it sick to delight in pain?
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
enthusiast
456 posts
Location: Hoboken, New Jersey, USA
456 posts
Location: Hoboken, New Jersey, USA
Posted:
Not if you're delighting in having LESS pain than you did. I'm so glad for you. Say, could I borrow Patrick? No, no, not for that! I just need Queer Eyeing. (They did do a gay guy, and since I live right near NYC (the city, not the spinner) maybe they'll do me too...but probably not until next June.)
About sex: been a long time for me. Getting ready to start up again. And you're right, it's not a sign of health, not having sex. In my case the lack of health was psychological (survivor guilt, poor body image, low self-esteem etc) rather than physical.
When my doctor (an internist with a specialty in infectious disease - he has a GREAT tableside manner) found out I hadn't had sex since 2000,* he told me to be sure and masturbate, since otherwise I could get prostatitis.
So I'm under doctor's orders to masturbate. Compliance not really an issue.
*No, the survivor guilt didn't kick in until 2001, obviously. But I've had "issues" for a while.
Not if you're delighting in having LESS pain than you did. I'm so glad for you. Say, could I borrow Patrick? No, no, not for that! I just need Queer Eyeing. (They did do a gay guy, and since I live right near NYC (the city, not the spinner) maybe they'll do me too...but probably not until next June.)
About sex: been a long time for me. Getting ready to start up again. And you're right, it's not a sign of health, not having sex. In my case the lack of health was psychological (survivor guilt, poor body image, low self-esteem etc) rather than physical.
When my doctor (an internist with a specialty in infectious disease - he has a GREAT tableside manner) found out I hadn't had sex since 2000,* he told me to be sure and masturbate, since otherwise I could get prostatitis.
So I'm under doctor's orders to masturbate. Compliance not really an issue.
*No, the survivor guilt didn't kick in until 2001, obviously. But I've had "issues" for a while.
"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations
180 posts
Location: Melbourne, Vic.
Location: Melbourne, Vic.
Posted:
Wow Lightning, I just can't imagine 10 years of pain and then suddenly no pain. Jesus, I bet you cried. Anyway, wow, that's really cool =). yoy
- Klaymen
Wow Lightning, I just can't imagine 10 years of pain and then suddenly no pain. Jesus, I bet you cried. Anyway, wow, that's really cool =). yoy
- Klaymen
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
I didn't cry. But I laughed like a complete dumba$$ every time I got out of a chair and felt my lower back straighten effortlessly under me.
Xopher, I have seen concerning things in my life. One was an older gentleman (73) in perfect health. Catholic. Never married. So I asked him, "when was the last time you ever had a sexual partner?" He said "never." And I realized...likely he was gay and chose celibacy. Unfortunately, not much I could do about it.
I didn't cry. But I laughed like a complete dumba$$ every time I got out of a chair and felt my lower back straighten effortlessly under me.
Xopher, I have seen concerning things in my life. One was an older gentleman (73) in perfect health. Catholic. Never married. So I asked him, "when was the last time you ever had a sexual partner?" He said "never." And I realized...likely he was gay and chose celibacy. Unfortunately, not much I could do about it.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
enthusiast
456 posts
Location: Hoboken, New Jersey, USA
456 posts
Location: Hoboken, New Jersey, USA
Posted:
Joy, joy, and three times joy to you! Praise be to Aesklapios!
My old urologist said that his patients who are Roman Catholic priests don't like it when he tells them they have to masturbate to maintain urological health. He tells them anyway; he considers it his responsibility as a physician.
That poor man! Let's leave a better world for our nieces and nephews, it's all we can do.
Joy, joy, and three times joy to you! Praise be to Aesklapios!
My old urologist said that his patients who are Roman Catholic priests don't like it when he tells them they have to masturbate to maintain urological health. He tells them anyway; he considers it his responsibility as a physician.
That poor man! Let's leave a better world for our nieces and nephews, it's all we can do.
"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
So I have an update. But I need to start with a little primer.
While I have had active AS, I have had two problems associated with it. The first one is the disease itself. It's a painful, deforming, and ultimately crippling disease, even when treated. The treatment helps to relieve the symptoms, but the disease still progresses. However, with Enbrel, that might have changed. The issue is that the constant inflammation around the spine causes the ligaments to harden, to calcify, and to eventually turn into new bone, fusing the spine.
The second issue is that the first-line drugs used to treat the symptoms of disease are non-steroidal anti-inflammatory drugs (NSAIDs). Examples of common NSAIDS are ibuprofen (ADVIL, MOTRIN, NUPRIN), aspirin, and naproxen (NAPROSYN, ALEVE). I was on called indomethacin (INDOCIN). It works really well, but it causes problems with the stomach. Basically, because it decreases the production of the mucus that coats the stomach lining and protects it from its own acid, the stomach bleeds, losing blood into the GI tract where the majority of it is lost in the stool. Thus, people on long-term indomethacin get an iron-deficiency anemia. This is complicated by the fact that chronic inflammation causes an anemia of chronic disease where the body makes less red blood cells.
So I was inflamed, not making a lot of red blood cells, and losing iron to my gut.
My rheumatologist drew some labs on me last week. Now, I haven't taken any indomethacin for a month now.
The first lab he drew is called a C-Reactive Protein, or a CRP. CRP is thought to be an anti-inflammatory protein that is elevated in systemic inflammation. Although it doesn't diagnose anything, it is used to track inflammation. It may be elevated in rheumatic diseases, infection, or cancer.
The next lab is called the Erythrocyte Sedimentation Rate, or ESR (called a "sed rate" when spoken). An ESR is based on the idea that in inflammation, nonspecific inflammatory proteins cause red blood cells (erythrocytes) to stick together. Clumped red blood cells sediment more quickly than non-clumped cells when placed in a water-based solution. The higher the ESR, the more inflammation there is in the body. Again, this is nonspecific and doesn't tell you what the disease is, just that there is inflammation due to autoimmunity, infection, or cancer.
Then he drew some iron studies on me to assess my hemoglobin levels and my iron stores.
Here are the results:
CRP = >0.1, or undetectable (normal is 0.6 or lower...I have been as high as 2.8 and never lower than 1.3)
ESR = 1 (normal is 15 or lower...I have been as high as 28, but lately I've been in the 10-15 range.)
Hemoglobin = 15 (normal for a young man is 14-16, but I've never been above 13.5 and I normally hang out around 12 or so).
iron studies these are tough to explain because they involve complex physiology of iron handling, but basically they indicate that I have plenty of iron onboard.
So, basically, the labs I just got back are better than normal. Most 27-year-olds have some low-level inflammation (CRP=0.4-0.6) because they're starting to get the beginnings of coronary artery disease. My labs are more consistent with a perfectly healthy 27-year-old athlete. And that's what I am now.
This miracle has been brought to you by Enbrel.
So I have an update. But I need to start with a little primer.
While I have had active AS, I have had two problems associated with it. The first one is the disease itself. It's a painful, deforming, and ultimately crippling disease, even when treated. The treatment helps to relieve the symptoms, but the disease still progresses. However, with Enbrel, that might have changed. The issue is that the constant inflammation around the spine causes the ligaments to harden, to calcify, and to eventually turn into new bone, fusing the spine.
The second issue is that the first-line drugs used to treat the symptoms of disease are non-steroidal anti-inflammatory drugs (NSAIDs). Examples of common NSAIDS are ibuprofen (ADVIL, MOTRIN, NUPRIN), aspirin, and naproxen (NAPROSYN, ALEVE). I was on called indomethacin (INDOCIN). It works really well, but it causes problems with the stomach. Basically, because it decreases the production of the mucus that coats the stomach lining and protects it from its own acid, the stomach bleeds, losing blood into the GI tract where the majority of it is lost in the stool. Thus, people on long-term indomethacin get an iron-deficiency anemia. This is complicated by the fact that chronic inflammation causes an anemia of chronic disease where the body makes less red blood cells.
So I was inflamed, not making a lot of red blood cells, and losing iron to my gut.
My rheumatologist drew some labs on me last week. Now, I haven't taken any indomethacin for a month now.
The first lab he drew is called a C-Reactive Protein, or a CRP. CRP is thought to be an anti-inflammatory protein that is elevated in systemic inflammation. Although it doesn't diagnose anything, it is used to track inflammation. It may be elevated in rheumatic diseases, infection, or cancer.
The next lab is called the Erythrocyte Sedimentation Rate, or ESR (called a "sed rate" when spoken). An ESR is based on the idea that in inflammation, nonspecific inflammatory proteins cause red blood cells (erythrocytes) to stick together. Clumped red blood cells sediment more quickly than non-clumped cells when placed in a water-based solution. The higher the ESR, the more inflammation there is in the body. Again, this is nonspecific and doesn't tell you what the disease is, just that there is inflammation due to autoimmunity, infection, or cancer.
Then he drew some iron studies on me to assess my hemoglobin levels and my iron stores.
Here are the results:
CRP = >0.1, or undetectable (normal is 0.6 or lower...I have been as high as 2.8 and never lower than 1.3)
ESR = 1 (normal is 15 or lower...I have been as high as 28, but lately I've been in the 10-15 range.)
Hemoglobin = 15 (normal for a young man is 14-16, but I've never been above 13.5 and I normally hang out around 12 or so).
iron studies these are tough to explain because they involve complex physiology of iron handling, but basically they indicate that I have plenty of iron onboard.
So, basically, the labs I just got back are better than normal. Most 27-year-olds have some low-level inflammation (CRP=0.4-0.6) because they're starting to get the beginnings of coronary artery disease. My labs are more consistent with a perfectly healthy 27-year-old athlete. And that's what I am now.
This miracle has been brought to you by Enbrel.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
And I just realized that "inflamation" has one M, not two.
Hukt on fonix wurkt fer mee.
And I just realized that "inflamation" has one M, not two.
Hukt on fonix wurkt fer mee.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
SILVER Member
....
344 posts
Location: Midlands - nr cov, United Kingdom
....
344 posts
Location: Midlands - nr cov, United Kingdom
Posted:
Most impressive, so pleased for you!
Lynne
Most impressive, so pleased for you!
Lynne
"But what would you do with a brain if you had one?"
Dorothy Gale
enthusiast
456 posts
Location: Hoboken, New Jersey, USA
456 posts
Location: Hoboken, New Jersey, USA
Posted:
(Yay)^22
(Yay)^22
"If you didn't like something the first time, the cud won't be any good either." --Elsie the Cow, Ruminations
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
So it's been seven months.
And I remain in remission. I had one little two-week period of increased pain and stiffness that ended. I have had one possible adverse event (infection in my foot) and I've had generally pain-free living.
Spinning's not any better, though.
So it's been seven months.
And I remain in remission. I had one little two-week period of increased pain and stiffness that ended. I have had one possible adverse event (infection in my foot) and I've had generally pain-free living.
Spinning's not any better, though.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
SILVER Member
Pasta of Muppets
2,722 posts
Location: in the interwebs..., United Kingdom
Pasta of Muppets
2,722 posts
Location: in the interwebs..., United Kingdom
Posted:
Mike, i'm all hugz for you... Hope it's still going well...
Mike, i'm all hugz for you... Hope it's still going well...
ohmygodlaserbeamspewpewpew!
BRONZE Member
Carpal \'Tunnel
3,136 posts
Location: Warwickshire, United Kingdom
Carpal \'Tunnel
3,136 posts
Location: Warwickshire, United Kingdom
Posted:
surely there can't be many more?
Written by:
I've never spoken on this board about a disease called ankylosing spondylitis
surely there can't be many more?
SILVER Member
no excuses. no apologies.
1,799 posts
Location: aotearoa, New Zealand
no excuses. no apologies.
1,799 posts
Location: aotearoa, New Zealand
Posted:
congratulations, mike.
was having AS the reason you journeyed down the road of physician-ship?
i have found (experientially, mind you, and not using the western-paradigm of scientific study) that acupuncture helps to lessen the side-effects of meds, and that it also helps with low-back pain (regardless of what its called...)...
(just putting my two cents in)
(resident acupuncturist (and energy-worker etc) )
congratulations, mike.
was having AS the reason you journeyed down the road of physician-ship?
i have found (experientially, mind you, and not using the western-paradigm of scientific study) that acupuncture helps to lessen the side-effects of meds, and that it also helps with low-back pain (regardless of what its called...)...
(just putting my two cents in)
(resident acupuncturist (and energy-worker etc) )
those that know, dont say. those that say, dont know.
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