I tried Elmiron, but couldn't take it due to hair loss, it worked well, I wish I could take it.
I stopped it 8 months ago and my hair is still falling out.
My name is Jessica and I'm the creator of this site, I've had IC for a number of years and can really relate to what you are going through (I'm not a doctor though, please always consult your doctor before making any important choices or with any questions regarding your health). I take Elmiron and it helps me to a certain degree, but I know that it's only effective for about 30-40% of interstitial cystitis population who try it.
It took about 4 months before I noticed that Elmiron was having a positive effect on my IC, which is somewhat normal as it can take weeks or even months before ICers notice any difference, if one is to occur, in there IC symptoms. The only side effect which I’ve ever linked to taking Elmiron myself has been (unwanted) weight gain. Annoying as that was, it happened within the first year, and was not enough to make me give up taking this specific medication.
My heart goes out to you, thinning hair amongst women seems to run in my family, and I’ve been noticing hair loss (not because of Elmiron however) since I was in my early teens. Though this, of course, is not the same thing that you are going through at all. Generally, from what I’ve read, the hair loss that accompanies Elmiron ceases shortly after the medication is discontinued, or in some cases after about 6 weeks of being on the drug itself (sources: Dr. Robert Mouldwin on IC and Pelvic Floor Dysfunction, Interstitial Cystitis Network's Meet the IC Expert Guest Lecture Transcript, "An Evening with Dr. C. Lowell Parsons, MD", About Elmiron (from WebMd)). If hair loss is still continuing for you (after 8 months), this is something that you’ll definitely want to speak to a doctor about; just in case it is due to another factor other than your previous Elmiron use (a dermatologist might be able to help you as well in this area).
There are a lot of other medical options (oral meds and otherwise) out there aside from Elmiron. In a very concise nutshell, some broad categories of oral medicines which have been helpful for many ICers (we're all different, sadly there is no one "magic cure" for IC - yet) are:
-Antibiotics/antimicrobial drugs: The role of antibiotics in treating IC is very controversial as IC has not been conclusively linked to bacteria in the way that a UTI/bladder infection is, and as such may not actually be helped by antibiotics. If antibiotics do help an ICer, one of two main things is possible: one that he/she had an overlapping UTI/other infection at the same time and this is what was helped by the antibiotic, or secondly that perhaps for a small percentage of ICers antibiotic drugs do actually help or eliminate their IC symptoms. As the exact cause of IC is not yet known, it's nearly impossible to rule out whether or not bacteria plays a direct role in IC.
-Anticonvulsants: Originally created to help combat Epilepsy and other seizure producing conditions, these drugs have since been found to be very helpful with a wide range of serious health problems that produce neuropathic pain. I've been taking an anticonvulsant called "Gabapentin" since 2003, and have found that it helps a fair bit with almost of my IC related symptoms, plus as well it's had fantastic results with my vulvodynia/vestibulitis, IBS, Restless Leg Syndrome, and to a lesser, but still noticeable extent, with my Fibromyalgia. Tegretol and Neurontin (also known as “Gabapentin), and more recently (to a far lesser extent at this point in time) a similar but more potent drug than Gabapentin called Pregabalin, are examples of anticonvulsant/anti-seizure medications which have been used with IC patients.
- Anticholinergics/antimuscarinics: Similar in some ways to antispasmodics, anticholinergic drugs increase the bladder’s size by aiding in the reduction of (intravesical) pressure which is upon it. They affect the central and peripheral neurological systems, and help to relax muscles. When it comes to IC, some of the more commonly prescribed anticholinergics include Detrol (tolterodine), Urised, and Urispas (flavoxate). Detrol is also used to help treat urinary incontinence.
-(Tricyclic) Antidepressants: Some ICers find that irregardless of if they require medication for actual depression, antidepressant drugs can help to lessen chronic (IC) pain by interfering with nerve signals and nervous system responses. There are many different types of antidepressant drugs, amongst which ones like Elavil, Vivactil, Doxepin, and Tofranil have been used for IC. In more recent years non-tricyclic antidepressants have also been tried on IC patients, where they sometimes aid in pain reduction and help the nervous system to steady itself. These drugs can often bring about stronger side effects than those experienced with their tricyclic cousins, and carry an increased risk of potential drug addiction in some cases. Examples of non-tricyclic antidepressants include Valium (Diazepam), Zoloft, Paxil, Prozac, Ativan (Lorazepam), Celexa, and Effexor.
-Antihistamines: These work to help combat the abnormally high levels of mast cells (cells that release irritating histamine into the body causing everything from swelling to inflammation to sneezing, as in the case of an allergy to say grass or pollen) that are found in many ICers' bladders. Elmiron and the antihistamine called "hydroxyzine" are sometimes prescribed in unison, and the two have worked well for many ICers. Examples of antihistamine drugs that have been for IC are hydroxyzine (brand names, Atarax and “Vistaril”), Tagamet (Cimetidine), and certain seasonal over-the-counter antihistamines.
-Anti-inflammatory drugs: Though not used extensively at this point in time with ICers, certain prescription anti-inflammatory drugs such as Vioxx (note that Vioxx was pulled off of the market in 2004 after serious concerns were raised about its safety) and Celebrex both of which belong to a family of drugs called NSAID (non steroidal anti-inflammatory drugs) Cox2 inhibitors. When it was still being prescribed I took Celebrex to help combat intense menstrual pain, and found that it reduced my pain levels by about 25%, which is more than any other non-opioid drug ever has. Other anti-inflammatory medications like Gastrocrom (Cromolyn Sodium/ Cromoglicate), which has anti-histamine properties as well, have also been used amongst limited numbers of IC patients.
-Antispasmodics: Some types of these drugs can be helpful in reducing things like bladder spasms and chronic pain. Ditropan (including Ditropan XL) and Anaspaz (Levsin) are antispasmodic medications that have been prescribed for IC.
-Muscle Relaxants – including some types of central nervous system depressants (CNS): Similar in some respects to antispasmodics (both work to calm), muscle relaxants are periodically prescribed for ICers. They tend to be helpful with problems such as pelvic floor muscle dysfunction, muscle spasms and pain. Flexeril (Cyclobenzaprine) and Baclofen are two types of muscle relaxing drugs which are sometimes given to ICers.
-Urinary Anesthetics: These medications work to help reduce urinary pain, as well as increased pain following urological procedures. For some people they have been reported to aid in lowing IC frequency and urgency as well (personally, I was not helped at all when I took them, and in fact became violently nauseous to the point where I had to stop taking them; but others have told me they've been helped). Both prescription and over-the-counter (OTC) urinary anesthetics are available (note that it can be harder to find OTC urinary anesthetics in countries outside of America, where a product called Uristat is available at most pharmacies there). Pyridium/ Phenazo (generically known as, phenazopyridine) and Pyridium Plus are two prescription urinary anesthetics which are sometimes prescribed for IC symptoms, including pain and frequency/urgency. They are also used in certain cases to help combat the pain and symptoms that can follow urological surgeries, or alongside an antibiotic in the treatment of urinary tract infections.
-Pain medications: both OTC and prescription: As their name implies, these drugs come in a very wide range of strengths and posses different abilities when it comes to reducing pain – IC and otherwise. Pain medications are generally grouped into two main categories, NSAIDs (non steroidal anti-inflammatory drugs) and opioids/steroidal/narcotic drugs.
- NSAIDS: Well known for their ability to reduce problems such as fevers, muscle aches, toothaches, headaches, mild pain, and inflammation, NSAIDs have antipyretic, analgesic and anti-inflammatory properties yet are not narcotic medications. Ibuprofen (Advil, Brufen, and Motrin) and aspirin/ acetylsalicylic acid are examples of OTC NSAIDs. Stronger NSAIDs are also available by prescription, such as Naproxen (some women find this helpful in reducing menstrual pain). Lastly it’s worth noting that Tylenol/ acetaminophen (usually called paracetamol in Europe), a common household pain and cold symptom reliever is not actually an anti-inflammatory; this has both pros and cons, as it makes it easier on your stomach than aspirin, but not as effective at relieving inflammation as products such as Advil may be. When paired with codeine, Tylenol is useful in reducing some types of mild to moderate pain, and is available by prescription in varying strengths of codeine.
-Opioids: Stronger than NSAIDs and only legally available by prescription, opioids are powerful pain reducing medications. These drugs typically work so effectively because they suppress your ability to perceive and interrupt pain signals that travel from your central nervous system (which in the case of interstitial cystitis patients usually involves pain from their bladders) to your brain. Opioids generally carry more side effects (including constipation, dizziness, anxiety, weakness, lethargy, weight gain, itching, hallucination, dry mouth/eyes, confusion, drowsiness, sweating, shortness of breath, headaches, lightheadedness, vomiting, nausea, urinary retention, and sedation) and a higher potential for abuse, addiction or dependency (which is not the same thing as abuse in many cases, it can simply be that your body has become extremely used to the presence of a particular drug and goes through withdrawal when the medication is ceased) than other forms of pain relief medication. Though when used exactly as prescribed by your doctor, opioids can become an integral part of a pain management toolkit. Opioid drugs can be administered in pill, topical application, injection or suppository form. Oxycodone (Percocet, Percodan, Roxiprin, Endodan, Tylox, Supeudol, and Combunox are all forms of this drug which vary slightly depending on what the Oxycodone is combined with) is one opiodid in particular which with some ICers have found success in reducing their pain symptoms. Other opioid drugs include (but are not limited to) morphine, Hydrocodone HCL (Vicodin/ Dicodide), Ultram (Tramal), Dextropropoxyphene (Darvon/ Doloxene/642 – the later being a name it is given in Canada), Talwin, and Duragesic (Fentanyl) Transdermal Patches which are worn on the skin.
Pain medication and managing your IC is an area that is extremely important to talk about with your physician. Another option for dealing with the pain that can come from IC (or any chronic illness) is to attend a pain clinic, which specifically handles the complex issues of long term pain.
This is of course, just a tremendously short list of some of the main drugs that doctors prescribe (and patients find helpful) for IC. New medications are continually being studied in the treatment of IC, sometimes these are pre-existing medications that were designed for other purposes, and other times researchers attempt to create substances which will primarily help IC bladders. As modern science continues to progress tremendously every year, it is all the more important to maintain hope that one day an affective treatment or cure for IC will be found.
Aside from prescriptions and OTC medications there are numerous other treatment options available that range from bladder instillations (medicines that introduced directly into your bladder through a catheter, also called intravesical treatments) like Heparin, DMSO (the only bladder instillation which has thus far been approved specifically for use with IC patients), Capsaici, BCG, and Clorpactin; herb and mineral/vitamin supplements (again, always an area that you've want to discuss with your doctor and pharmacist), relaxation and stress reduction techniques, bladder hydrodistensions, Botox injections, alternative/complimentary approaches (like acupuncture, message, biofeedback, and Asian medicine); nerve stimulation (such as using a TENS machine), pelvic floor muscle therapy, and in extreme cases even surgical options (usually a "last resort" that the majority of ICers never have to come to) such as Neuromodulation (a sacral nerve stimulation implant), cystectomy (bladder removal and urine diversion), bladder augmentation (surgery to increase the size of the bladder, usually with a piece of the small intestine), and transurethral fulguration (burning off ulcerated areas of the bladder lining with a laser or electricity).
In your daily life you may find that implementing and adhering to an IC friendly diet (which reduces foods that are known bladder irritants such as coffee, soda, caffeine, chocolate, tomatoes, citrus and tropic fruits, hot spices, soy, and MSG), taking acid reducing/buffering dietary supplements like Relief, reducing stress, drinking plenty of water, getting proper amounts of sleep, reducing or eliminating physical activities which upset your bladder (increase those that don’t bother you to compensate), and taking steps to manage your IC pain (therapy, medication, etc) can have positive effects on your symptoms.
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Jessica Cangiano: ICadvice.com creator and administrator
Interstitial Cystitis treatment options
My name is Jessica and I'm the creator of this site, I've had IC for a number of years and can really relate to what you are going through (I'm not a doctor though, please always consult your doctor before making any important choices or with any questions regarding your health). I take Elmiron and it helps me to a certain degree, but I know that it's only effective for about 30-40% of interstitial cystitis population who try it.
It took about 4 months before I noticed that Elmiron was having a positive effect on my IC, which is somewhat normal as it can take weeks or even months before ICers notice any difference, if one is to occur, in there IC symptoms. The only side effect which I’ve ever linked to taking Elmiron myself has been (unwanted) weight gain. Annoying as that was, it happened within the first year, and was not enough to make me give up taking this specific medication.
My heart goes out to you, thinning hair amongst women seems to run in my family, and I’ve been noticing hair loss (not because of Elmiron however) since I was in my early teens. Though this, of course, is not the same thing that you are going through at all. Generally, from what I’ve read, the hair loss that accompanies Elmiron ceases shortly after the medication is discontinued, or in some cases after about 6 weeks of being on the drug itself (sources: Dr. Robert Mouldwin on IC and Pelvic Floor Dysfunction, Interstitial Cystitis Network's Meet the IC Expert Guest Lecture Transcript, "An Evening with Dr. C. Lowell Parsons, MD", About Elmiron (from WebMd)). If hair loss is still continuing for you (after 8 months), this is something that you’ll definitely want to speak to a doctor about; just in case it is due to another factor other than your previous Elmiron use (a dermatologist might be able to help you as well in this area).
There are a lot of other medical options (oral meds and otherwise) out there aside fromElmiron. In a very concise nutshell, some broad categories of oral medicines which have been helpful for many ICers (we're all different, sadly there is no one "magic cure" for IC - yet) are:
-Antibiotics/antimicrobial drugs: The role of antibiotics in treating IC is very controversial as IC has not been conclusively linked to bacteria in the way that a UTI/bladder infection is, and as such may not actually be helped by antibiotics. If antibiotics do help an ICer, one of two main things is possible: one that he/she had an overlapping UTI/other infection at the same time and this is what was helped by the antibiotic, or secondly that perhaps for a small percentage of ICers antibiotic drugs do actually help or eliminate their IC symptoms. As the exact cause of IC is not yet known, it's nearly impossible to rule out whether or not bacteria plays a direct role in IC.
-Anticonvulsants: Originally created to help combat Epilepsy and other seizure producing conditions, these drugs have since been found to be very helpful with a wide range of serious health problems that produce neuropathic pain. I've been taking an anticonvulsant called "Gabapentin" since 2003, and have found that it helps a fair bit with almost of my IC related symptoms, plus as well it's had fantastic results with my vulvodynia/vestibulitis, IBS, Restless Leg Syndrome, and to a lesser, but still noticeable extent, with my Fibromyalgia. Tegretol and Neurontin (also known as “Gabapentin), and more recently (to a far lesser extent at this point in time) a similar but more potent drug than Gabapentin called Pregabalin, are examples of anticonvulsant/anti-seizure medications which have been used with IC patients.
- Anticholinergics/antimuscarinics: Similar in some ways to antispasmodics, anticholinergic drugs increase the bladder’s size by aiding in the reduction of (intravesical) pressure which is upon it. They affect the central and peripheral neurological systems, and help to relax muscles. When it comes to IC, some of the more commonly prescribed anticholinergics include Detrol (tolterodine), Urised, and Urispas (flavoxate). Detrol is also used to help treat urinary incontinence.
-(Tricyclic) Antidepressants: Some ICers find that irregardless of if they require medication for actual depression, antidepressant drugs can help to lessen chronic (IC) pain by interfering with nerve signals and nervous system responses. There are many different types of antidepressant drugs, amongst which ones like Elavil, Vivactil, Doxepin, and Tofranil have been used for IC. In more recent years non-tricyclic antidepressants have also been tried on IC patients, where they sometimes aid in pain reduction and help the nervous system to steady itself. These drugs can often bring about stronger side effects than those experienced with their tricyclic cousins, and carry an increased risk of potential drug addiction in some cases. Examples of non-tricyclic antidepressants include Valium (Diazepam), Zoloft, Paxil, Prozac, Ativan (Lorazepam), Celexa, and Effexor.
-Antihistamines: These work to help combat the abnormally high levels of mast cells (cells that release irritating histamine into the body causing everything from swelling to inflammation to sneezing, as in the case of an allergy to say grass or pollen) that are found in many ICers' bladders. Elmiron and the antihistamine called "hydroxyzine" are sometimes prescribed in unison, and the two have worked well for many ICers. Examples of antihistamine drugs that have been for IC are hydroxyzine (brand names, Atarax and “Vistaril”), Tagamet (Cimetidine), and certain seasonal over-the-counter antihistamines.
-Anti-inflammatory drugs: Though not used extensively at this point in time with ICers, certain prescription anti-inflammatory drugs such as Vioxx (note that Vioxx was pulled off of the market in 2004 after serious concerns were raised about its safety) and Celebrex both of which belong to a family of drugs called NSAID (non steroidal anti-inflammatory drugs) Cox2 inhibitors. When it was still being prescribed I took Celebrex to help combat intense menstrual pain, and found that it reduced my pain levels by about 25%, which is more than any other non-opioid drug ever has. Other anti-inflammatory medications like Gastrocrom (Cromolyn Sodium/ Cromoglicate), which has anti-histamine properties as well, have also been used amongst limited numbers of IC patients.
-Antispasmodics: Some types of these drugs can be helpful in reducing things like bladder spasms and chronic pain. Ditropan (including Ditropan XL) and Anaspaz (Levsin) are antispasmodic medications that have been prescribed for IC.
-Muscle Relaxants – including some types of central nervous system depressants (CNS): Similar in some respects to antispasmodics (both work to calm), muscle relaxants are periodically prescribed for ICers. They tend to be helpful with problems such as pelvic floor muscle dysfunction, muscle spasms and pain. Flexeril (Cyclobenzaprine) and Baclofen are two types of muscle relaxing drugs which are sometimes given to ICers.
-Urinary Anesthetics: These medications work to help reduce urinary pain, as well as increased pain following urological procedures. For some people they have been reported to aid in lowing IC frequency and urgency as well (personally, I was not helped at all when I took them, and in fact became violently nauseous to the point where I had to stop taking them; but others have told me they've been helped). Both prescription and over-the-counter (OTC) urinary anesthetics are available (note that it can be harder to find OTC urinary anesthetics in countries outside of America, where a product called Uristat is available at most pharmacies there). Pyridium/ Phenazo (generically known as, phenazopyridine) and Pyridium Plus are two prescription urinary anesthetics which are sometimes prescribed for IC symptoms, including pain and frequency/urgency. They are also used in certain cases to help combat the pain and symptoms that can follow urological surgeries, or alongside an antibiotic in the treatment of urinary tract infections.
-Pain medications: both OTC and prescription: As their name implies, these drugs come in a very wide range of strengths and posses different abilities when it comes to reducing pain – IC and otherwise. Pain medications are generally grouped into two main categories, NSAIDs (non steroidal anti-inflammatory drugs) and opioids/steroidal/narcotic drugs.
- NSAIDS: Well known for their ability to reduce problems such as fevers, muscle aches, toothaches, headaches, mild pain, and inflammation, NSAIDs have antipyretic, analgesic and anti-inflammatory properties yet are not narcotic medications. Ibuprofen (Advil, Brufen, and Motrin) and aspirin/ acetylsalicylic acid are examples of OTC NSAIDs. Stronger NSAIDs are also available by prescription, such as Naproxen (some women find this helpful in reducing menstrual pain). Lastly it’s worth noting that Tylenol/ acetaminophen (usually called paracetamol in Europe), a common household pain and cold symptom reliever is not actually an anti-inflammatory; this has both pros and cons, as it makes it easier on your stomach than aspirin, but not as effective at relieving inflammation as products such as Advil may be. When paired with codeine, Tylenol is useful in reducing some types of mild to moderate pain, and is available by prescription in varying strengths of codeine.
-Opioids: Stronger than NSAIDs and only legally available by prescription, opioids are powerful pain reducing medications. These drugs typically work so effectively because they suppress your ability to perceive and interrupt pain signals that travel from your central nervous system (which in the case of interstitial cystitis patients usually involves pain from their bladders) to your brain. Opioids generally carry more side effects (including constipation, dizziness, anxiety, weakness, lethargy, weight gain, itching, hallucination, dry mouth/eyes, confusion, drowsiness, sweating, shortness of breath, headaches, lightheadedness, vomiting, nausea, urinary retention, and sedation) and a higher potential for abuse, addiction or dependency (which is not the same thing as abuse in many cases, it can simply be that your body has become extremely used to the presence of a particular drug and goes through withdrawal when the medication is ceased) than other forms of pain relief medication. Though when used exactly as prescribed by your doctor, opioids can become an integral part of a pain management toolkit. Opioid drugs can be administered in pill, topical application, injection or suppository form. Oxycodone (Percocet, Percodan, Roxiprin, Endodan, Tylox, Supeudol, and Combunox are all forms of this drug which vary slightly depending on what the Oxycodone is combined with) is one opiodid in particular which with some ICers have found success in reducing their pain symptoms. Other opioid drugs include (but are not limited to) morphine, Hydrocodone HCL (Vicodin/ Dicodide), Ultram (Tramal), Dextropropoxyphene (Darvon/ Doloxene/642 – the later being a name it is given in Canada), Talwin, and Duragesic (Fentanyl) Transdermal Patches which are worn on the skin.
Pain medication and managing your IC is an area that is extremely important to talk about with your physician. Another option for dealing with the pain that can come from IC (or any chronic illness) is to attend a pain clinic, which specifically handles the complex issues of long term pain.
This is of course, just a tremendously short list of some of the main drugs that doctors prescribe (and patients find helpful) for IC. New medications are continually being studied in the treatment of IC, sometimes these are pre-existing medications that were designed for other purposes, and other times researchers attempt to create substances which will primarily help IC bladders. As modern science continues to progress tremendously every year, it is all the more important to maintain hope that one day an affective treatment or cure for IC will be found.
Aside from prescriptions and OTC medications there are numerous other treatment options available that range from bladder instillations (medicines that introduced directly into your bladder through a catheter, also called intravesical treatments) like Heparin, DMSO (the only bladder instillation which has thus far been approved specifically for use with IC patients), Capsaici, BCG, and Clorpactin; herb and mineral/vitamin supplements (again, always an area that you've want to discuss with your doctor and pharmacist), relaxation and stress reduction techniques, bladder hydrodistensions, Botox injections, alternative/complimentary approaches (like acupuncture, message, biofeedback, and Asian medicine); nerve stimulation (such as using a TENS machine), pelvic floor muscle therapy, and in extreme cases even surgical options (usually a "last resort" that the majority of ICers never have to come to) such as Neuromodulation (a sacral nerve stimulation implant), cystectomy (bladder removal and urine diversion), bladder augmentation (surgery to increase the size of the bladder, usually with a piece of the small intestine), and transurethral fulguration (burning off ulcerated areas of the bladder lining with a laser or electricity).
In your daily life you may find that implementing and adhering to an IC friendly diet (which reduces foods that are known bladder irritants such as coffee, soda, caffeine, chocolate, tomatoes, citrus and tropic fruits, hot spices, soy, and MSG), taking acid reducing/buffering dietary supplements like Relief, reducing stress, drinking plenty of water, getting proper amounts of sleep, reducing or eliminating physical activities which upset your bladder (increase those that don’t bother you to compensate), and taking steps to manage your IC pain (therapy, medication, etc) can have positive effects on your symptoms.
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!