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So I was talking to my pharmacist today and he informed me that Elmiron is being taken off the market. Anyone else hear this?? If so, why?
Nancy
Nancy
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Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.
Had a UTI in Oct 2009
IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms
Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe
Diagnosed fibromyalgia/lyme disease in 1999
Acid reflux since 1998
Have tried the following therapies:
pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
Ativan-helps some
Vicodin-some relief.
ditropan-only caused fluid retention
toviaz-same as abovee
detrol-no relief
hydroxyzine-get some relief but not for urgency
valium-helps relax the muscles
flexeril-same as the valium
B&O suppositories-they help a little
started estrogen cream
starting effexor soon
Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.
current meds and treatment:
nexium
ativan
valium suppositories
hydroxyzine
IC diet
methenamine mandalate
estrogen cream
effexor
B&O suppositories
Had bladder instills but this made the urethra spasms much worse.
Had hernia repair with fundoplication dec, 2011
Will be trying the anti inflammatory diet. Hope it works.
I dont know where to start with this diet.
Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.
Husband is my biggest supporter. I need the urgency to go away. What helps?? -
elmiron
After months of struggling with a bad flare that has not responded to anything yet, my uro suggested that I go back on Elmiron (I stopped it over a year ago since I was in a remission). I went to the pharmacy and they did not have it. They found it at another pharmacy and are having it sent to them, but they told me they have been having a hard time getting it. Not sure why. And my darn insurance barely covers any of the price
I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell. -
For a time there was a manufacturing glitch, but it should be available. Hopefully very soon there will be a generic available, which will cut our costs considerably.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
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Where do pharmacist get this information? I haven't heard anything about any problems lately either. I am just wondering about the pharmacist because I have seen this happen with other drugs as well. A manufacturing delay and people are told it is off the market. They don't realize the terror they cause some with chronic illnesses, do they?
Glad you were able to find it somewhere else.Link to the patient information, everything from What is IC? to Disability
http://www.ic-network.com/patientlinks.html
American Urological Association Clinical Guideline
Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
http://www.auanet.org/content/guidel...ent_ic-bps.pdfComment
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I hope you are correct Donna. Terror is a good word for how I feel about it. I thought it was a glitch but they started making it again. I respect pharmacist. Often they understand meds better then Doctors. Praying this one had false information this time. Thank you all for the information. Please keep us up on any infor you get. Hug, ZiggyComment
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I have never had a problem getting this or any other medication. Sure there are times that they didn't have enough to fill my prescriptions but they always either had some for a few days or if not they would call other pharmacies for me.Comment
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Im not sure whats going on. I spoke to my current urologist today and he said its in limbo whether or not they will continue manufacturing the drug? I dont get it either. Anyone else find out anything different from their pharmacy?
NancyNancy - newly remarried Sept 2011! Have 5 kids ages 7-22.
Had a UTI in Oct 2009
IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms
Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe
Diagnosed fibromyalgia/lyme disease in 1999
Acid reflux since 1998
Have tried the following therapies:
pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
Ativan-helps some
Vicodin-some relief.
ditropan-only caused fluid retention
toviaz-same as abovee
detrol-no relief
hydroxyzine-get some relief but not for urgency
valium-helps relax the muscles
flexeril-same as the valium
B&O suppositories-they help a little
started estrogen cream
starting effexor soon
Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.
current meds and treatment:
nexium
ativan
valium suppositories
hydroxyzine
IC diet
methenamine mandalate
estrogen cream
effexor
B&O suppositories
Had bladder instills but this made the urethra spasms much worse.
Had hernia repair with fundoplication dec, 2011
Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.
Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.
Husband is my biggest supporter. I need the urgency to go away. What helps??Comment
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Oh my goodness! I hope your Urologist is incorrect. I think I will lose all hope without Elmiron!! I've been on it 9 months now and am finally starting to feel better. I really hope they keep it on the market.Originally posted by Nal View Post~Valery~
Dx with IC 3/2009 - Cysto w/Hydro
Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)Comment
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I agree. It didn't help me but since there seems to be so little that helps thus horrid disease or whatever you want to call it, we need all these mess to stay on the market!!!Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.
Had a UTI in Oct 2009
IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms
Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe
Diagnosed fibromyalgia/lyme disease in 1999
Acid reflux since 1998
Have tried the following therapies:
pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
Ativan-helps some
Vicodin-some relief.
ditropan-only caused fluid retention
toviaz-same as abovee
detrol-no relief
hydroxyzine-get some relief but not for urgency
valium-helps relax the muscles
flexeril-same as the valium
B&O suppositories-they help a little
started estrogen cream
starting effexor soon
Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.
current meds and treatment:
nexium
ativan
valium suppositories
hydroxyzine
IC diet
methenamine mandalate
estrogen cream
effexor
B&O suppositories
Had bladder instills but this made the urethra spasms much worse.
Had hernia repair with fundoplication dec, 2011
Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.
Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.
Husband is my biggest supporter. I need the urgency to go away. What helps??Comment
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Elmiron still being distributed
I just checked their website and it says they have started distributing elmiron again. It maybe just that pharmacy where you get it from usually. Their ordering maybe different now due to that shortage. Check with other pharmacies you may have to switch to another one. Every pharmacy orders differently sometimes them themselves no longer order from a certain company or discontinuing ordering certain drugs. Good luck I know how important elmiron is to us with sensitive painful bladders. I still depend on it too.Comment
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