A retroactive study presented to the American College of Gastroenterology meeting in San Diego suggests an increased risk of inflammatory bowel disease after the use of Accutane (isotretinoin).
From the study: "We found that there did appear to be an association between prior [isotretinoin] use and subsequent development of ulcerative colitis. There appeared to be approximately a 4 times increased risk for those who had taken [isotretinoin] compared with those who had not."
There doesn't seem to be the same high risk of developing Crohn's Disease, however.
Accutane is most often Rx'd for intractable acne, but is used for other conditions as well. There has long been warnings about not using Accutane during pregnancy due to its causality of severe birth defects.
Note from Rosie - this probably doesn't apply to most of us Gimps, but may apply to our relatives and friends.
> A retroactive study presented to the American College of > Gastroenterology meeting in San Diego suggests an increased risk of > inflammatory bowel disease after the use of Accutane (isotretinoin).
> From the study: "We found that there did appear to be an association > between prior [isotretinoin] use and subsequent development of ulcerative > colitis. There appeared to be approximately a 4 times increased risk for > those who had taken [isotretinoin] compared with those who had not."
> There doesn't seem to be the same high risk of developing Crohn's > Disease, however.
> Accutane is most often Rx'd for intractable acne, but is used for > other conditions as well. There has long been warnings about not using > Accutane during pregnancy due to its causality of severe birth defects.
> Note from Rosie - this probably doesn't apply to most of us Gimps, > but may apply to our relatives and friends.
> How are you doing lately, haven't heard from you in ages.
> -- > Love and hugs to all > Love Squirrely Jo
>> A retroactive study presented to the American College of >> Gastroenterology meeting in San Diego suggests an increased risk of >> inflammatory bowel disease after the use of Accutane (isotretinoin).
>> From the study: "We found that there did appear to be an association >> between prior [isotretinoin] use and subsequent development of ulcerative >> colitis. There appeared to be approximately a 4 times increased risk for >> those who had taken [isotretinoin] compared with those who had not."
>> There doesn't seem to be the same high risk of developing Crohn's >> Disease, however.
>> Accutane is most often Rx'd for intractable acne, but is used for >> other conditions as well. There has long been warnings about not using >> Accutane during pregnancy due to its causality of severe birth defects.
>> Note from Rosie - this probably doesn't apply to most of us Gimps, >> but may apply to our relatives and friends.
thank You Rosie. we are packing up and getting ready for a yard sale. I just hope we can get stuff done in time. I wish you the best. I hope you stay healthy too.
On Fri, 6 Nov 2009 13:56:55 -0500, RosieS wrote (in message <-YqdnQ-y1_7k7GnXnZ2dnUVZ_qSdn...@posted.stratonet>):
> Note from Rosie - this probably doesn't apply to most of us Gimps, but > may apply to our relatives and friends.
heehee, reading through this I was wishing I could blame my crohn's on Accutane.
I lit into someone on the crohn's-colitis group yesterday who was spewing the old BS about diet alone will cure you and "Meds are not the long term solution". Told him I'd BTDT with psoriasis and psoriatic arthritis and "miracle" diets made no difference and I wasn't about to put myself through that again for crohn's! Being the 3rd known generation in a direct line with auto-immune crud in my family (and with brother & sister each having one AI disease), it's kinda obvious that the immune system is the problem with me.
I suspect one day they'll find digestive disorders have different origins, some are localized and some are the true all-out auto-immune insults some of us are prone to.
-- Nann remove the Gator cheer to email me You can see a lot by just looking --- Yogi Berra
I'm one of the ones with localized issues and I get grief from the gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge vestibule above the stomach, plus chronic gastritis, diverticulitis and fissures. As many times as I remind that doc that it is ALL Ehlers-Danlos related is as many times as he forgets and lectures me about having it all, as if I could prevent it. And he's YOUNGER than I am (!!??!!)
At least I'm not seeing so many things on the Interweb blamed on Leaky Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky gut is how we get 70% of our immune systems, so perhaps those of us with AI issues oughta duct-tape ours? lol
Hugs from Rosie
"Nann Bell" <hanbellGOGAT...@earthlink.net> wrote in message
> On Fri, 6 Nov 2009 13:56:55 -0500, RosieS wrote > (in message <-YqdnQ-y1_7k7GnXnZ2dnUVZ_qSdn...@posted.stratonet>):
>> Note from Rosie - this probably doesn't apply to most of us Gimps, >> but >> may apply to our relatives and friends.
> heehee, reading through this I was wishing I could blame my crohn's on > Accutane.
> I lit into someone on the crohn's-colitis group yesterday who was spewing > the > old BS about diet alone will cure you and "Meds are not the long term > solution". Told him I'd BTDT with psoriasis and psoriatic arthritis and > "miracle" diets made no difference and I wasn't about to put myself > through > that again for crohn's! Being the 3rd known generation in a direct line > with > auto-immune crud in my family (and with brother & sister each having one > AI > disease), it's kinda obvious that the immune system is the problem with > me.
> I suspect one day they'll find digestive disorders have different origins, > some are localized and some are the true all-out auto-immune insults some > of > us are prone to.
> -- > Nann > remove the Gator cheer to email me > You can see a lot by just looking --- Yogi Berra
> I'm one of the ones with localized issues and I get grief from the > gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge > vestibule above the stomach, plus chronic gastritis, diverticulitis and > fissures. As many times as I remind that doc that it is ALL Ehlers-Danlos > related is as many times as he forgets and lectures me about having it > all, as if I could prevent it. And he's YOUNGER than I am (!!??!!)
> At least I'm not seeing so many things on the Interweb blamed on Leaky > Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky gut is how > we get 70% of our immune systems, so perhaps those of us with AI issues > oughta duct-tape ours? lol
>>> Note from Rosie - this probably doesn't apply to most of us Gimps, >>> but >>> may apply to our relatives and friends.
>> heehee, reading through this I was wishing I could blame my crohn's on >> Accutane.
>> I lit into someone on the crohn's-colitis group yesterday who was spewing >> the >> old BS about diet alone will cure you and "Meds are not the long term >> solution". Told him I'd BTDT with psoriasis and psoriatic arthritis and >> "miracle" diets made no difference and I wasn't about to put myself >> through >> that again for crohn's! Being the 3rd known generation in a direct line >> with >> auto-immune crud in my family (and with brother & sister each having one >> AI >> disease), it's kinda obvious that the immune system is the problem with >> me.
>> I suspect one day they'll find digestive disorders have different >> origins, >> some are localized and some are the true all-out auto-immune insults some >> of >> us are prone to.
>> -- >> Nann >> remove the Gator cheer to email me >> You can see a lot by just looking --- Yogi Berra
> I'm one of the ones with localized issues and I get grief from the > gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge > vestibule above the stomach, plus chronic gastritis, diverticulitis and > fissures. As many times as I remind that doc that it is ALL Ehlers-Danlos > related is as many times as he forgets and lectures me about having it > all, as if I could prevent it. And he's YOUNGER than I am (!!??!!)
> At least I'm not seeing so many things on the Interweb blamed on Leaky > Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky gut is how > we get 70% of our immune systems, so perhaps those of us with AI issues > oughta duct-tape ours? lol
>>> Note from Rosie - this probably doesn't apply to most of us Gimps, >>> but >>> may apply to our relatives and friends.
>> heehee, reading through this I was wishing I could blame my crohn's on >> Accutane.
>> I lit into someone on the crohn's-colitis group yesterday who was spewing >> the >> old BS about diet alone will cure you and "Meds are not the long term >> solution". Told him I'd BTDT with psoriasis and psoriatic arthritis and >> "miracle" diets made no difference and I wasn't about to put myself >> through >> that again for crohn's! Being the 3rd known generation in a direct line >> with >> auto-immune crud in my family (and with brother & sister each having one >> AI >> disease), it's kinda obvious that the immune system is the problem with >> me.
>> I suspect one day they'll find digestive disorders have different >> origins, >> some are localized and some are the true all-out auto-immune insults some >> of >> us are prone to.
>> -- >> Nann >> remove the Gator cheer to email me >> You can see a lot by just looking --- Yogi Berra
> ah hummmmm are you trying to go way over the quota there Miss Rosie. ;-)
> -- > Love and hugs to all > Love Squirrely Jo
>> Hiya Nann,
>> I'm one of the ones with localized issues and I get grief from the >> gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge >> vestibule above the stomach, plus chronic gastritis, diverticulitis and >> fissures. As many times as I remind that doc that it is ALL Ehlers-Danlos >> related is as many times as he forgets and lectures me about having it >> all, as if I could prevent it. And he's YOUNGER than I am (!!??!!)
>> At least I'm not seeing so many things on the Interweb blamed on Leaky >> Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky gut is >> how we get 70% of our immune systems, so perhaps those of us with AI >> issues oughta duct-tape ours? lol
>>>> Note from Rosie - this probably doesn't apply to most of us >>>> Gimps, but >>>> may apply to our relatives and friends.
>>> heehee, reading through this I was wishing I could blame my crohn's on >>> Accutane.
>>> I lit into someone on the crohn's-colitis group yesterday who was >>> spewing the >>> old BS about diet alone will cure you and "Meds are not the long term >>> solution". Told him I'd BTDT with psoriasis and psoriatic arthritis and >>> "miracle" diets made no difference and I wasn't about to put myself >>> through >>> that again for crohn's! Being the 3rd known generation in a direct line >>> with >>> auto-immune crud in my family (and with brother & sister each having one >>> AI >>> disease), it's kinda obvious that the immune system is the problem with >>> me.
>>> I suspect one day they'll find digestive disorders have different >>> origins, >>> some are localized and some are the true all-out auto-immune insults >>> some of >>> us are prone to.
>>> -- >>> Nann >>> remove the Gator cheer to email me >>> You can see a lot by just looking --- Yogi Berra
On Mon, 9 Nov 2009 11:59:53 -0500, RosieS wrote (in message <ALmdnYGN58Ec12XXnZ2dnUVZ_sudn...@posted.stratonet>):
> Hiya Nann,
> I'm one of the ones with localized issues and I get grief from the > gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge > vestibule above the stomach, plus chronic gastritis, diverticulitis and > fissures. As many times as I remind that doc that it is ALL Ehlers-Danlos > related is as many times as he forgets and lectures me about having it all, > as if I could prevent it. And he's YOUNGER than I am (!!??!!)
heh - I don't know which is worse, having the doc forget about your Ehlers-Danlos or having them all tell you yours is a confusing case! In fact, there's still an outside chance it isn't crohn's but it looks enough like it to pull out the big guns for that. naturally, i'm hoping for the energy boost of effective treatment!
BTW, after delays in getting the TB test serum, I finally have had mine done, read & faxed off tot he GI office. All is in order now to get insurance approval for Humira which i'm hoping will come quickly!
> At least I'm not seeing so many things on the Interweb blamed on Leaky > Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky gut is how > we get 70% of our immune systems, so perhaps those of us with AI issues > oughta duct-tape ours? lol
*shudder* the thought of lining one's intestines with duct tape...... and the mess created if a bit comes loose! Uh-uh, I'm not dealing with THAT obstruction!
I think leaky gut has given way to colon cleansing for a while. That's everywhere out there now. I briefly had fantasies that it might help my GI system, until i realized I'd been "cleansed" several imes in preparation for testing! LOL -- Nann remove the Gator cheer to email me You can see a lot by just looking --- Yogi Berra
Ooooh I hope it does go thru quickly, Nann and you get the Humira. It'll settle you down. Whether 'somewhat' or 'mostly' is the part that remains to be seen. Best o' luck with it!
Hugs from Rosie
"Nann Bell" <hanbellGOGAT...@earthlink.net> wrote in message
> On Mon, 9 Nov 2009 11:59:53 -0500, RosieS wrote > (in message <ALmdnYGN58Ec12XXnZ2dnUVZ_sudn...@posted.stratonet>):
>> Hiya Nann,
>> I'm one of the ones with localized issues and I get grief from the >> gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge >> vestibule above the stomach, plus chronic gastritis, diverticulitis and >> fissures. As many times as I remind that doc that it is ALL Ehlers-Danlos >> related is as many times as he forgets and lectures me about having it >> all, >> as if I could prevent it. And he's YOUNGER than I am (!!??!!)
> heh - I don't know which is worse, having the doc forget about your > Ehlers-Danlos or having them all tell you yours is a confusing case! In > fact, there's still an outside chance it isn't crohn's but it looks enough > like it to pull out the big guns for that. naturally, i'm hoping for the > energy boost of effective treatment!
> BTW, after delays in getting the TB test serum, I finally have had mine > done, > read & faxed off tot he GI office. All is in order now to get insurance > approval for Humira which i'm hoping will come quickly!
>> At least I'm not seeing so many things on the Interweb blamed on >> Leaky >> Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky gut is >> how >> we get 70% of our immune systems, so perhaps those of us with AI issues >> oughta duct-tape ours? lol
> *shudder* the thought of lining one's intestines with duct tape...... and > the mess created if a bit comes loose! Uh-uh, I'm not dealing with THAT > obstruction!
> I think leaky gut has given way to colon cleansing for a while. That's > everywhere out there now. I briefly had fantasies that it might help my > GI > system, until i realized I'd been "cleansed" several imes in preparation > for > testing! LOL > -- > Nann > remove the Gator cheer to email me > You can see a lot by just looking --- Yogi Berra
I ain't trying to cut into the return line that I have never even found yet. Tsk, it's all ONE thing--it's all caused by EDS which the MD wrote down - I saw him write it - but obviously never remembers what it is. Tells me I shouldn't have this and that, and all I do is nod. I agree I shouldn't...but both of my parents have passed so I can't even complain about getting it passed down anymore. Perhaps if I wear a sticker that sez "I have EDS" on our visits? lol Anyways, ladies, it only counts for one item, ok? :-)
Hugs from Rosie
"loujeanb" <medical23SkidooF...@sc.rr.com> wrote in message
> Sounds like it to me. I thought we were only allowed three "named" > conditions with various others allowed.
> -- > Navy > Take out the FISH to email me. > "Squirrely" <s...@sonic.net> wrote in message > news:4af90883$0$1616$742ec2ed@news.sonic.net... >> ah hummmmm are you trying to go way over the quota there Miss Rosie. >> ;-)
>> -- >> Love and hugs to all >> Love Squirrely Jo
>>> Hiya Nann,
>>> I'm one of the ones with localized issues and I get grief from the >>> gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge >>> vestibule above the stomach, plus chronic gastritis, diverticulitis and >>> fissures. As many times as I remind that doc that it is ALL >>> Ehlers-Danlos related is as many times as he forgets and lectures me >>> about having it all, as if I could prevent it. And he's YOUNGER than I >>> am (!!??!!)
>>> At least I'm not seeing so many things on the Interweb blamed on >>> Leaky Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky >>> gut is how we get 70% of our immune systems, so perhaps those of us with >>> AI issues oughta duct-tape ours? lol
>>>>> Note from Rosie - this probably doesn't apply to most of us >>>>> Gimps, but >>>>> may apply to our relatives and friends.
>>>> heehee, reading through this I was wishing I could blame my crohn's on >>>> Accutane.
>>>> I lit into someone on the crohn's-colitis group yesterday who was >>>> spewing the >>>> old BS about diet alone will cure you and "Meds are not the long term >>>> solution". Told him I'd BTDT with psoriasis and psoriatic arthritis >>>> and >>>> "miracle" diets made no difference and I wasn't about to put myself >>>> through >>>> that again for crohn's! Being the 3rd known generation in a direct >>>> line with >>>> auto-immune crud in my family (and with brother & sister each having >>>> one AI >>>> disease), it's kinda obvious that the immune system is the problem with >>>> me.
>>>> I suspect one day they'll find digestive disorders have different >>>> origins, >>>> some are localized and some are the true all-out auto-immune insults >>>> some of >>>> us are prone to.
>>>> -- >>>> Nann >>>> remove the Gator cheer to email me >>>> You can see a lot by just looking --- Yogi Berra
On Wed, 11 Nov 2009 13:36:11 -0500, RosieS wrote (in message <D8SdneGyMLCRmWbXnZ2dnUVZ_uWdn...@posted.stratonet>):
> Ooooh I hope it does go thru quickly, Nann and you get the Humira. It'll > settle you down. Whether 'somewhat' or 'mostly' is the part that remains to > be seen. Best o' luck with it!
heh, my RD's been reluctant to try another TNF blocker after I quit absorbing protein on Enbrel. But no one understands *why* that happened so my GI and I decided to try Humira, keeping a *very* close eye on my labs (doing them bi-weekly). We'll see what happens - and if the same occurs again..... well, I suspect I'll be racking up the medical miles again and reprising my role as guinea pig!
-- Nann remove the Gator cheer to email me You can see a lot by just looking --- Yogi Berra
> I ain't trying to cut into the return line that I have never even > found yet. > Tsk, it's all ONE thing--it's all caused by EDS which the MD wrote > down - I saw him write it - but obviously never remembers what it is. > Tells me I shouldn't have this and that, and all I do is nod. I agree I > shouldn't...but both of my parents have passed so I can't even complain > about getting it passed down anymore. > Perhaps if I wear a sticker that sez "I have EDS" on our visits? lol > Anyways, ladies, it only counts for one item, ok? :-)
> Hugs from Rosie
> "loujeanb" <medical23SkidooF...@sc.rr.com> wrote in message > news:hdd7i1$v92$1@news.eternal-september.org... >> Sounds like it to me. I thought we were only allowed three "named" >> conditions with various others allowed.
>> -- >> Navy >> Take out the FISH to email me. >> "Squirrely" <s...@sonic.net> wrote in message >> news:4af90883$0$1616$742ec2ed@news.sonic.net... >>> ah hummmmm are you trying to go way over the quota there Miss Rosie. >>> ;-)
>>> -- >>> Love and hugs to all >>> Love Squirrely Jo
>>>> Hiya Nann,
>>>> I'm one of the ones with localized issues and I get grief from the >>>> gastro doc that I shouldn't. Yes, I have a fragile esophagus and a huge >>>> vestibule above the stomach, plus chronic gastritis, diverticulitis and >>>> fissures. As many times as I remind that doc that it is ALL >>>> Ehlers-Danlos related is as many times as he forgets and lectures me >>>> about having it all, as if I could prevent it. And he's YOUNGER than I >>>> am (!!??!!)
>>>> At least I'm not seeing so many things on the Interweb blamed on >>>> Leaky Gut Syndrome. If our guts weren't leaky we'd all be dead. Leaky >>>> gut is how we get 70% of our immune systems, so perhaps those of us >>>> with AI issues oughta duct-tape ours? lol
>>>>>> Note from Rosie - this probably doesn't apply to most of us >>>>>> Gimps, but >>>>>> may apply to our relatives and friends.
>>>>> heehee, reading through this I was wishing I could blame my crohn's on >>>>> Accutane.
>>>>> I lit into someone on the crohn's-colitis group yesterday who was >>>>> spewing the >>>>> old BS about diet alone will cure you and "Meds are not the long term >>>>> solution". Told him I'd BTDT with psoriasis and psoriatic arthritis >>>>> and >>>>> "miracle" diets made no difference and I wasn't about to put myself >>>>> through >>>>> that again for crohn's! Being the 3rd known generation in a direct >>>>> line with >>>>> auto-immune crud in my family (and with brother & sister each having >>>>> one AI >>>>> disease), it's kinda obvious that the immune system is the problem >>>>> with me.
>>>>> I suspect one day they'll find digestive disorders have different >>>>> origins, >>>>> some are localized and some are the true all-out auto-immune insults >>>>> some of >>>>> us are prone to.
>>>>> -- >>>>> Nann >>>>> remove the Gator cheer to email me >>>>> You can see a lot by just looking --- Yogi Berra
> On Wed, 11 Nov 2009 13:36:11 -0500, RosieS wrote > (in message <D8SdneGyMLCRmWbXnZ2dnUVZ_uWdn...@posted.stratonet>):
>> Ooooh I hope it does go thru quickly, Nann and you get the Humira. It'll >> settle you down. Whether 'somewhat' or 'mostly' is the part that remains >> to >> be seen. Best o' luck with it!
> heh, my RD's been reluctant to try another TNF blocker after I quit > absorbing > protein on Enbrel. But no one understands *why* that happened so my GI > and I > decided to try Humira, keeping a *very* close eye on my labs (doing them > bi-weekly). We'll see what happens - and if the same occurs again..... > well, > I suspect I'll be racking up the medical miles again and reprising my role > as > guinea pig!
> -- > Nann > remove the Gator cheer to email me > You can see a lot by just looking --- Yogi Berra
Rosie - Thank you for posting this!! I wonder how many of us previously used accutane. Joint and muscle inflammation/pain, as well as depression, are very well known side effects, and I had severe costochondritis while on the drug in my teens. It makes me wonder if it has any connection with other autoimmune diseases besides IBD. That is NOT to say that I believe it's the cause of my auto-immune illnesses, but rather that it may have been one of the contributing factors (along with my already known contributors of genetics and a severe case of mononucleosis at age 14)
RosieS wrote: > A retroactive study presented to the American College of Gastroenterology > meeting in San Diego suggests an increased risk of inflammatory bowel > disease after the use of Accutane (isotretinoin).
> From the study: "We found that there did appear to be an association > between prior [isotretinoin] use and subsequent development of ulcerative > colitis. There appeared to be approximately a 4 times increased risk for > those who had taken [isotretinoin] compared with those who had not."
> There doesn't seem to be the same high risk of developing Crohn's > Disease, however.
> Accutane is most often Rx'd for intractable acne, but is used for other > conditions as well. There has long been warnings about not using Accutane > during pregnancy due to its causality of severe birth defects.
> Note from Rosie - this probably doesn't apply to most of us Gimps, but > may apply to our relatives and friends.
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