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Should I Get A 2Nd Opinion


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17 replies to this topic

#1 KikiUSA

 
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Posted 30 May 2011 - 10:20 AM

My 16 year old daughter had both upper and lower GI done last week. The doctor took biopsies to check her for Celiac since I have it and she has been losing weight really fast. She now only weighs 98 pounds and she is 5'6". After my daughter came out of the proceedure the doctor showed me pictures of what she did and said that my daughter had alot of bile in her stomach and she had IBS and we would know about the Celiac at a later date.
My concern came in when she gave us a prescription that I took to be filled and the pharmasist was saying they could not fill it and that it was a dangerous pill for my 16 year old to be on and continued to say that I need to sign an agreement with the doctor on this medication stating that I understood the dangers of it!
The medication is Lotronex, it is the only medication for IBS I was told. Has anyone ever been on it? I really am afraid to put her on this medication and thinking I should get a second opinion.
Any input would be much appreciated.

thanks
  • 0
Diagnosed 12-2-09 with celiac disease
Have a wonderful husband who I am madly in love with and 2 wonderful children
Everyday is a challenge and journey, I am so glad I have people to go through it with

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#2 IrishHeart

 
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Posted 30 May 2011 - 10:56 AM

Wow..when a pharmacist balks at filling a prescription, that would get my attention.

Here's a link to what the drug's side effects are--and the first few list gastro problems--now, why on earth would anyone want MORE gastro problems??

http://www.ncbi.nlm....lth/PMH0000163/

Sounds like a pretty scary drug to me!

DEFINITELY a 2nd or 3rd opinion!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 a1956chill

 
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Posted 30 May 2011 - 11:04 AM

I would definitely get a second opinion .
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#4 maximoo

 
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Posted 30 May 2011 - 11:13 AM

Jut out of curiosity I would call the Dr & ask why this med was chosen. The Dr could've made a mistake. Tell him/her you are not giving that poison to your DD. If the dr. cannot come up with anything better, then kick him/her to the curb. And you should get a 2nd opinion & maybe a new dr too.
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#5 KikiUSA

 
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Posted 30 May 2011 - 11:15 AM

Thanks everyone for responding....I will be getting a second opinion for sure!!!!!!!!!!!!
  • 0
Diagnosed 12-2-09 with celiac disease
Have a wonderful husband who I am madly in love with and 2 wonderful children
Everyday is a challenge and journey, I am so glad I have people to go through it with

#6 ravenwoodglass

 
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Posted 30 May 2011 - 11:53 AM

What that doctor should have done is told you to get your daughter on a trial of the diet, IMHO. IBS is not a diagnosis it is a symptom but instead of telling you to try the diet she gave you a script for a toxic med with scads of side effects and most likely a nice high copay.
Since she has had the biopsy, and with that doctor I would get copies of all blood work and the actual biopsy report, a trial of the diet is what you should do next. With your being a diagnosed celiac the chances that your DD is also is fairly high.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 Takala

 
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Posted 30 May 2011 - 12:36 PM

Would suggest you further research as to whether this physician has had any sort of disciplinary action or just to moved to your state, or has attended a legitimate medical degree dispensing higher educational school of learning. :ph34r:

Good that the pharmacist caught it.

Eleven years ago the FDA knew that the maker of this drug had a problem:
http://www.fda.gov/D...s/ucm110887.htm

11/29/2000
The manufacturer of Lotronex (alosetron) tablets -- a drug used to treat irritable bowel syndrome in women -- has voluntarily decided to withdraw Lotronex from the market after discussions with the Food and Drug Administration (FDA) on how to best manage risk.
This drug has been associated with reports of serious side effects such as intestinal damage as a result of reduced blood flow to the intestine (ischemic colitis), severely obstructed or ruptured bowels (complications of severe constipation), and death.
What is Lotronex?
Lotronex is a prescription medicine used to treat women with irritable bowel syndrome (IBS) who have diarrhea as their main symptom (diarrhea-predominant IBS). Lotronex has not been shown to help men with IBS.
What is IBS?
IBS is also called irritable colon and spastic colon. IBS causes lower abdominal pain and discomfort, urgency (a sudden need to have a bowel movement), and irregular bowel habits, such as diarrhea or constipation. In some people IBS causes mostly constipation; in others, mostly diarrhea; some people have alternating periods of diarrhea and constipation. Lotronex was approved only for women with diarrhea-predominant IBS

_________

the updated FDA Lotronex recommendations from 2 years later, 6/7/2002
http://www.fda.gov/D...s/ucm110859.htm


1. What are the Food and Drug Administration (FDA) and GlaxoSmithKline (GSK) announcing today? (June 7 2002)
FDA and GSK are announcing FDA's decision to approve GSK's application to make the prescription drug Lotronex (alosetron) available again in the near future. Because of serious safety concerns, Lotronex will only be available through a restricted marketing program. Lotronex is only approved for women with severe diarrhea-predominant irritable bowel syndrome (d-IBS) who meet certain criteria. It is estimated that only 5% of IBS patients have severe IBS, and fewer have severe diarrhea-predominant IBS.

2. What are the restrictions for marketing Lotronex?
GSK has agreed to implement a Prescribing Program for Lotronex. Physicians enrolled in the program must attest to having certain qualifications and agree to fulfill specific responsibilities. Physicians enrolled in the Prescribing Program for Lotronex will agree to inform patients of the risks and benefits of Lotronex and to have patients sign a Patient-Physician Agreement indicating that they understand these risks and benefits. Enrolled physicians will then affix a sticker, which identifies the physician as a participant in the Prescribing Program for Lotronex, to each Lotronex prescription. This sticker will allow the pharmacist to identify that the prescription was written by a physician enrolled in the Prescribing Program for Lotronex.

3. What is Lotronex?
Lotronex is a medicine that slows the movement of stools through the bowels. Lotronex does not cure IBS and it will not help every person who takes it. For those who are helped, Lotronex reduces lower abdominal (stomach area) pain, abdominal discomfort, urgency (sudden need to have a bowel movement), and diarrhea of IBS. Patients who stop taking Lotronex may experience return of their IBS symptoms within 1 or 2 weeks.

4. Who should take Lotronex?
Lotronex is only approved for women with severe diarrhea-predominant IBS.
The following should be true for patients who take Lotronex:
The main IBS problem is diarrhea
IBS has gone on for a long time, 6 months or longer
A physician has informed the patient that symptoms are not due to other medical problems
Other IBS treatments have been tried and none has helped
IBS is thought to be very bad if a patient has one or more of the following problems:
Lots of painful stomach cramps or bloating
Inability to control the need to have a bowel movement or have "accidents" where underwear gets dirty from diarrhea or bowel movement (stools)
Inability to lead a normal home or work life because of the need to be near a bathroom
Unless all of these things are true, Lotronex should not be considered for use.
Women whose main IBS problem is constipation should not use Lotronex. Lotronex has not been shown to help men with IBS.

5. Why did GSK stop marketing Lotronex?
Lotronex was voluntarily withdrawn from the market by GSK on November 28, 2000, after discussions with FDA concerning the severity and number of adverse reactions resulting from the use of Lotronex. Lotronex has been associated with reports of serious intestinal conditions, including severe constipation and ischemic colitis. These conditions can lead to hospitalization, blood transfusions, surgery, and even death.


6. What is ischemic colitis?
Ischemic colitis is a condition resulting from reduced blood flow to the intestines, which causes serious intestinal damage, and sometimes death. Some of the signs and symptoms of ischemic colitis are new or worsening abdominal pain, fever, vomiting, bloody diarrhea, rectal bleeding and low back pain.



Since you are already celiac and your daughter is 5'-6" and under a 100 lbs and withering ("symptoms"), and this disease is hereditary, I doubt that slowing down the procession of the poison thru the intestines to the point of the potential for ischemic colitis is going to be very helpful. Notice the part I bolded above "a physician has informed the patient that symptoms are not due to other medical problems" how could the physician make that assumption without a genetics test, a trial of a gluten free diet with consideration given to other food intolerances such as lactose, soy, etc, and the RESULTS OF THE BIOPSY.
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#8 ravenwoodglass

 
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Posted 30 May 2011 - 01:04 PM

Would suggest you further research as to whether this physician has had any sort of disciplinary action or just to moved to your state, or has attended a legitimate medical degree dispensing higher educational school of learning. :ph34r:

Good that the pharmacist caught it.

Eleven years ago the FDA knew that the maker of this drug had a problem:
http://www.fda.gov/D...s/ucm110887.htm


_________

the updated FDA Lotronex recommendations from 2 years later, 6/7/2002
http://www.fda.gov/D...s/ucm110859.htm




Since you are already celiac and your daughter is 5'-6" and under a 100 lbs and withering ("symptoms"), and this disease is hereditary, I doubt that slowing down the procession of the poison thru the intestines to the point of the potential for ischemic colitis is going to be very helpful. Notice the part I bolded above "a physician has informed the patient that symptoms are not due to other medical problems" how could the physician make that assumption without a genetics test, a trial of a gluten free diet with consideration given to other food intolerances such as lactose, soy, etc, and the RESULTS OF THE BIOPSY.



In light of this I would also report the doctor to the AMA. This med should never have been prescribed for your daughter since your doctor doesn't even have the results of the biopsy yet. Wonder how many Lotronex goodies that doctor has like pens, pads etc.....
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 IrishHeart

 
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Posted 30 May 2011 - 01:05 PM

Like I said...when a PHARMACIST balks at it...it can't be good!!!

Good research, Takala!!

I would take this info into the office and WATCH the doctor as she reads it. This is a gross incompetence!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#10 mushroom

 
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Posted 30 May 2011 - 01:29 PM

Wow, Kiki, I am glad you came on and asked. That sounds like one awful medication and one really bad doc :o
  • 0
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------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#11 Chiana

 
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Posted 30 May 2011 - 02:38 PM

In light of this I would also report the doctor to the AMA. This med should never have been prescribed for your daughter since your doctor doesn't even have the results of the biopsy yet. Wonder how many Lotronex goodies that doctor has like pens, pads etc.....


The laws on that changed over a year ago. Pharmaceutical companies can't give away goodies anymore. My boyfriend's sister used to be a pharmaceutical rep.
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#12 Darn210

 
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Posted 30 May 2011 - 02:53 PM

Just also wanted to add that you shouldn't worry about offending your doc by wanting a second opinion. In a conversation with my former OB/GYN (she left her practice to go to law school :( ) she gave me some great advice . . . If a doctor is upset that you are going for a second opinion, then you don't want them for your doctor in the first place.
  • 1
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#13 ravenwoodglass

 
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Posted 30 May 2011 - 04:04 PM

The laws on that changed over a year ago. Pharmaceutical companies can't give away goodies anymore. My boyfriend's sister used to be a pharmaceutical rep.


Good. Now if they would just get drug commercials off TV........
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#14 KikiUSA

 
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Posted 30 May 2011 - 04:24 PM

I am glad i did ask you all about this! I will be calling for a new doctor tomorrow for my daughter. I felt so uncomfortable with all of this and I am glad I turned here for help...Thanks everyone!
  • 0
Diagnosed 12-2-09 with celiac disease
Have a wonderful husband who I am madly in love with and 2 wonderful children
Everyday is a challenge and journey, I am so glad I have people to go through it with

#15 viviendoparajesus

 
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Posted 31 May 2011 - 08:44 PM

I am glad you did not just give her the medication considering the pharmacist's reaction and the side effects of the drug. I would talk to her she is a teen and has a right to be involved in her treatment. My family did not know gluten intolerance runs in the family, so I did not know my food was making me sick, so I suffered for years. My boyfriend found a book and I gave a gluten free diet a try and it made me feel a lot better. It is inconvenient and annoying at times, but I would not cheat because I know how sick I was. I think your daughter might like how she feels if she gives up gluten and some of the other often offending foods (some people even seem to be able to return to some foods once their gut heals). I think she deserves to know the risks of treatment including medication and to have a role in her treatment.
  • 0
Misdiagnosed - IBS, TMJ, eczema, KP, etc
Real Diagnosis - Gluten & Casein (milk protein) Intolerance, Cross Reactivity to Yeast & Buckwheat
Recommend: Tests: Entero Labs Gluten Sensitivity & Gene Testing
Books: * Allergies by Dr. Carolee Bateson-Koch (digestion, yeast, parasites, body pH...)
* Why Do I Still Have Thyroid Symptoms by Dr. Datis Kharrazian (gluten & autoimmune problems)
* Change Your Brain Change Your Life by Dr. Daniel Amen (foods, supplements...)
Supplements: * digestive enzymes, * probiotics (dairy free - Klaire Labs - Pro5)




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