Thread: oral heparine?
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09-16-2008, 01:52 PM #1ICN Member
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oral heparine?
I just noticed that heparine was recalled off the market... isn't heparine in elmiron? just a bit worried! anyone know if I am wrong?
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09-16-2008, 02:00 PM #2ICN Member
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hey there
nope its not in elmiron....elmiron is a mild anticoagulant though...
it is different from elmiron....
here is a blurb for ya..
Elmiron is an FDA approved drug (since 1996) used in the treatment of Interstitial Cystitis (IC). Elmiron's chemical name is pentosan polysulfate sodium. It is manufactured in 100mg doses, taken in pill form. In the United States it is manufactured by Alza Pharmaceuticals.
Elmiron is a fairly new drug treatment for IC. At it's root Elmiron is a very weak anticoagulant (blood thinner) when administered through an IV, however taking it orally as IC patients do, has very little of this action.
Elmiron is typically considered to be a Heparinoid, which means that it is structurally similar to heparin sulfate an element found on the bladder surface mucin. Elmiron is excreted through the urine and therefore a small amount of it passes through the bladder unchanged. This action is thought to cause Elmiron to adhere to the bladder lining. Elmiron is metabolised through the liver, and therefore patients with pre-existing liver conditions may not be suitable for Elmiron.
What is Elmiron's chemical compound (name)?
β-D-Xylan (1->4) 2, 3 bis (hydrogen sulfate), sodium salt. It has a molecular weight of 4,000-6,000 Dalton. Elmiron is a white, odourless powder, which is soluble in water. It is a semi synthetic Heparin like drug (macromolecular carbohydrate) which resembles glycosaminoglycans chemically, and in it's overall structure.
What is the recommended dosage of Elmiron?
100mgs taken 3 times daily. Elmiron is manufactured in 100mg white capsules that have a hard gelatine coating. Some IC patients note an adverse reaction to gelatine and therefore opt to remove the medication from the capsule prior to consuming it.
How does Elmiron affect Interstitial Cystitis?
Though the medical community does not yet understand exactly how Elmiron works, the most likely reason is that it appears to coat the bladder and subsequently aid in the restoration of the bladder's surface or glycosaminoglycan (GAG) layer. This very important layer is often damaged/deteriorated in IC patients for whatever reason (no exact cause of IC is thus far known, so reasons as to why the GAG layer becomes damaged are also not precisely known at this point in time.)
This layer is thought to be responsible for guarding the bladder wall form the irritants in urine and from bacteria. When the GAG layer is damaged symptoms such as inflammation and pain often occur. Elmiron is thought to work like an artificial GAG layer, and thusly relief may be obtained as the bladder has a chance to be "protected" by this new GAG layer, while the original has time to regenerate and heal.
I have heard Elmiron referred to as an orphan drug why is this?
Elmiron is often referred to as an orphan drug primarily for two reasons. One is that it is the only drug of it's kind, in the sense that it's chemical properties are unique to it. Elmiron has no oral substitutes, and no similar drugs exist on the market at this time. As well it is the only FDA oral drug approved specifically for the treatment of IC.
Will Elmiron cure me?
As the cause/causes of IC are unknown, a definitive "cure" also eludes medical science, so the short answer is no, Elmiron will not cure you. However, it may help relieve your IC symptoms. Many patients find that Elmiron allows them to regain a sense of "normalcy" in their lives, as it may decrease many IC symptoms such as frequency, urgency and bladder/pelvic/lower abdominal pain.
Elmiron is quickly becoming the first line of defence when it comes to the treatment of IC with oral medications, despite the fact that it can take several months to see visible results. Numerous studies have shown that Elmiron is indeed beneficial to many IC patients.
Is Elmiron available worldwide?
No, Elmiron is currently available in only a handful of countries, despite its successful reputation and FDA (should it specify for people not from North America that the FDA is the United States Food and Drug Administration?) approval. To the best of the author's knowledge Elmiron is available for dispersion and distribution only in the following countries:
* Canada (Drug name; Elmiron)
* United States (Drug name; Elmiron)
* Italy (Drug name; Fibrase)
* Spain (Drug name; Fibrocid)
* Austria (Drug name; Polyanion)
* Germany (Drug name; Fibrezym)
* France (Drug name; Hemoclar)
* South Africa (Drug name; Tavan SP-54)
As the pharmaceutical laws and regulations vary greatly from country to country it may be possible to obtain Elmiron with the assistance of your doctor if you do not live in a country where it is currently available. Your doctor may apply to the Pharmaceutical (medicine) board or similar organization of your country for the right to bring in Elmiron. He or she will then have the Elmiron delivered to their office/clinic and in turn prescribe it to you. Please check with your doctor about this possibility if you require Elmiron but do not live in a country where it is available.
It is advised that you do not attempt to bring Elmiron into your country if it is not available there (for example having it shipped in the post), as you may be breaking the drug trafficking and importing laws of your country, and could face legal prosecution.
I am currently on Elmiron and I don't see/feel any benefits, why?
Many IC patients find that if they are going to see any positive effects of Elmiron it takes between 3-6 months, and some opt to keep trying for as long a year. A decrease in pain is often one of the first reported positive effects, with fewer frequency and urgency symptoms following. Clinical and open-label trials (tests) have shown that Elmiron does indeed improve symptoms of IC. Though the results of such studies vary it appears that about 35-40 percent of IC patients who take Elmiron notice marked improvement (some open label studies raise that number in the 60 percentile).
Part of the reason that Elmiron may take so long to work, is that it often has to work to undo months or years worth of "damage" to the bladder's GAG layer, resulting from IC. Elmiron itself does not heal the bladder wall, instead it offers a layer of protection to the bladder while it heals, which is often a drawn out process. As such it's best to stay on Elmiron for at least a six-month trial period (assuming no adverse reactions occur), as it may take that long to see any positive effects.
Why is it recommended to wait before taking Elmiron after eating?
In order for as much Elmiron to directly reach your bladder as possible it is recommended that you take it on an empty stomach. It is best to take Elmiron at least one hour before a meal or two hours after a meal (or drinking heavy beverages). Elmiron should be taken with at least 8 ounces of water.
The less stomach matter Elmiron has to navigate through the more that can reach the bladder's GAG layer. While some IC patients find this hard to adjust to at first (especially if they are used to frequently snacking) the effectiveness of Elmiron does appear to be greater if these guidelines are adhered to as best as possibI am a cat lover----wouldn't be here without em


been having a bad time so now trying meds to help the situation but its an uphill battle


One day we will all have relief from pain....i do believe that but it doesn't come fast enough....


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09-16-2008, 02:04 PM #3ICN Member
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heres a better one...
http://www.drugs.com/pro/elmiron.html
definition is that its heparin-like not actually from heparin
'Pentosan polysulfate sodium is a semi-synthetically produced heparin-like macromolecular carbohydrate derivative, which chemically and structurally resembles glycosaminoglycans. 'I am a cat lover----wouldn't be here without em


been having a bad time so now trying meds to help the situation but its an uphill battle


One day we will all have relief from pain....i do believe that but it doesn't come fast enough....


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09-16-2008, 04:34 PM #4
There is no heparin in elmiron.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
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.
Anyone who says something is foolproof hasn't met a determined fool
.....My Meggie.....

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06-29-2010, 11:45 AM #5ICN Member
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Heparin
So was Heparin taken off the market? If so, why?
Thanks.
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06-29-2010, 01:59 PM #6
Hi all,
This is a very old thread. Heparin was recalled in early 2009 due to contamination of heparin supplies that had come from China. Some patients had become sick from it in 2008 and so there was a large recall in early 2009 as the cases came to light. Since this recall, heparin has become more expensive, but...
...there is currently in 2010 no heparin recall & there should not be any problem in buying it as prescribed.Kadi
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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.
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Current treatments:
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06-29-2010, 03:40 PM #7ICN Member
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Thanks.
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