This will be an ongoing list. It will be medications (meds) I am taking, some other people are taking that request information on or medications I find in research that might be interesting. This list might get a little bit lengthy so I might be adding extra pages to it. Most definitions will come from Wikipedia, or the Interstitial Cystitis Association web site. If they are not I will note where I found the information at the end of the definition. I do not write the definitions word for word, I do a lot of paraphrasing to help with the space, so if you need more information let me know and I’ll post it. Just a reminder, I will be posting how medications worked for me. Remember each treatment has a 50% chance of working. Whether or not it worked for me does not mean it will or will not work for you. **There are many medications that will not be on this list, because I am only using medications that are commonly used. If there is a medication you would like to see on here let me know. Please bear with me while I finish updating. All side effects I list are most common not very serious side effects. There are some VERY serious side effects, like I said before I am not a doctor; you need to discuss each medication with your doctor in full detail including ALL serious and non-serious side effects. ** Any blue links will lead you either to the FDA drug index to drug warnings or to with information telling you extra information about the medication.

1. Elmiron (Pentosan)-The first USDA approved drug to specifically treat IC. It is believed to work by providing a protective coating to the damaged bladder wall. The drug must be taken for several months for most patients to achieve some benefit. More recently, however, pentosan polysulfate has been studied as part of a “rescue instillation” which is placed directly in the bladder and can, perhaps, provide better effectiveness. C. Lowell Parsons has presented a research study, which shows 90% effectiveness in reducing the symptoms of IC patients by using this instillation. Side Effects: Patients who have taken Elmiron orally report a variety of side effects, primarily GI complaints such as diarrhea, heartburn, and stomach pain. Hair loss, headache, rash, insomnia has also been reported. One concern is the potential for blood thinning with this medication. Some patients have reported that they bruise more easily. In some cases, patients are asked to stop medication before any major surgical procedures to reduce the likelihood of bleeding. I took Elmiron for about 5 months. I noticed a minimal difference in the way I felt. I did have some clumps of hair come out and my hair did feel like it was thinning. It worked really well at first but like everything else with me it work for a bit then stopped. **The next 3 medications are a part of a “cocktail” that doctors sometimes use to treat IC. **

2. Antidepressants: Doctors (who are treating your IC), do not prescribe antidepressants for depression; they are used to help in other beneficial ways that have been proven to help IC and other pain conditions. For people with IC, antidepressants are usually prescribed in smaller amounts than used for treating depression. Antidepressants are prescribed in smaller doses then for people with depression, these drugs help IC by blocking pain. However, the reason they work as a treatment is not known. Reasons for prescribing antidepressants: – These medicines relax the bladder and decrease the intensity of bladder contractions, diminishing frequency by delaying the desire to urinate -Sedative effects, caused by their antihistamine properties -Blockage or re-absorption of certain neurotransmitters (serotonin and noradrenaline), which cause the brain to misinterpret or ignore pain impulses Most common antidepressants: Amitriptyline (formerly Elavil, now generic), Desipramine (Norpramin), Nortriptyline (Pamelor), Doxepin (Sinequan), Imipramine (Tofranil). Side Effects: Constipation, blurred vision, difficulty in urination, increased sensitivity to sunlight, avoid grapefruit and grapefruit juice, increased heart rate, decreased blood pressure accompanied by dizziness. I have been on Amitriptyline and Nortriptyline. With both medications I have had sensitivity to sunlight. If you are out in the sun a lot you will definitely get burned! Be very careful and spend shorter amounts of time in the sunlight. I came off of the Amitriptyline to switch to see if something else would work better, and I also was feeling very tired when I woke up in the morning. With the Nortriptyline I still have the sun sensitivity but other then that I’m ok.

3. Antihistamines: Some people have reported a decrease in symptoms while using antihistamines or medications with the same properties of antihistamines. Claritin, Benadryl, and Singulair have been reported helpful. A mild anti-anxiety drug, hydroxyzine is available in two oral forms: Hydroxyzine pamoate (Vistaril) and Hydroxyzine hydrochloride (Atarax). Hydroxyzine affects mast cell degranulation, which is thought to play a part in some IC patients’ symptoms, especially those who have a history of allergies, migraines and irritable bowel syndrome. Hydroxyzine has been shown to improve these conditions, as well as IC. Hydroxyzine has been found to decrease: Nocturia (night time voiding), daytime frequency, pain (burning, pressure, painful intercourse). Side Effects: Sedation, dry mouth, and increased depression in patients diagnosed with concurrent depression.

**Try to take this med early in the evening to help with morning drowsiness. For most people daytime drowsiness disappears within first 4-5 days. **

I took Hydroxyzine for quite awhile. I had a lot of morning drowsiness, and dry mouth. I stopped taking the medication because the drowsiness was so bad for me.

4. Anti-seizure: These medications have been used to treat chronic pain, and sometimes have a benefit in treating IC. The main medications are: Gabapentin (Neurontin) and Pregabalin (Lyrica).

Side Effects: Most common side effects are fatigue and drowsiness. **It is very IMPORTANT to start and stop these medications slowly. Take your time, if not your body could experience negative effects. **

I started taking Gabapentin in November of 2006; I stopped in April of 2008. The worst side effect was drowsiness. It was to the point where I was falling asleep at work. I started the medication too fast and it had that negative effect. I have gone up and down on dosages. I increased slower the second time I had to increase and the drowsiness was not as bad. Now I am taking Oxcarbazepine and have been taking it since April. No negative effects to report.

5.Bladder Instillation’s: Instillation are put into the bladder through a catheter. Sometimes these are done at the doctor’s office and other times the patients are trained how to catheterize themselves and can do the instillation’s at home more frequently. DMSO is the only approved bladder instillation for IC, however it is less frequently used.

**”Research studies presented at recent conferences of the American Urological Association by C. Subah Packer have demonstrated that the FDA approved dosage of a 50% solution of DMSO had the potential of creating irreversible muscle contraction. However, a lesser solution of 25% was found to be reversible. Long term use is questionable, at best, particularly given the fact that the method of action of DMSO is not fully understood.” -This is directly from Wikipedia, and I felt it was important information to have on here. **

Recently “rescue instillation’s” have been used to reduce a flare of symptoms. The most common medications are Elmiron or heparin, cystistat, lidocaine and sodium bicarbonate. Studies have shown 90% effectiveness in reducing symptoms.

I was doing bladder instillation’s for a long time. I used a combination of heparin and lidocaine. Heparin is not available through a lot of pharmacies anymore. The lidocaine is used as an alkalinized local anesthetic and the heparin is used because it believed to help restore the mucous layer in the bladder, and it helps to create a protective coating. If a doctor mentions teaching you how to use a catheter, don’t worry. I was scared at first but it’s really easy! It’s really strange, but you get so used to it that and it becomes a piece of cake. I know it’s something that people don’t really want to have it be a part of their normal routine, but it really does relieve some pain! It gave me quite a bit of relief, lowered frequency and pain!

6.Pain control: Pain control is a part of almost every IC treatment plan. IC pain has been compared to the pain of people in the end stages of cancer. The medications in this category can be dangerous if not used correctly. Make sure you speak to your doctor about all the medication you are currently on, be aware of the side effects that could happen, and discuss the side effects you are having with him. The main type of pain control used is the pill form of opiates. Other pain medications and treatments are also listed in this category. Opiates (narcotics): The most common opiates are morphine, codeine,in thebaine, papaverine, hydrocodone and oxycodone. Side Effects: nausea, vomiting, constipation, lightheadedness, dizziness, drowsiness, flushing, vision changes, or mental/mood changes are among the most common.

Muscle Relaxers: These medications are sometimes used for the treatment of anxiety but have also been found helpful in the treatment of pelvic floor tension and muscle spasms. Most commonly used are diazepam (Valium) and cyclobenzaprine (Flexeril). Side Effects: Drowsiness, suppression of REM sleep, impaired motor function (coordination, balance, dizziness, nausea), depression, impaired learning, and anterograde amnesia (loss of memory) in higher doses. Methadone: This is considered a narcotic (opiate) medication. It works on certain centers in the brain to relieve pain. Side Effects: Nausea, vomiting, constipation, lightheadedness, dizziness, dry mouth, drowsiness, stomach upset, and increased sweating.

URINARY ANESTHETICS: These medications (by prescription or over the counter) are known for turning your urine orange (a panty liner will help to prevent it from getting on your clothes). It may help with some of the pain, and can help relax the bladder spasms. Some people this has no effect on. The most common medication is Pyridium. Urised is a combined medication of an anesthetic and an anticholinergic agent (to help relax the bladder). **If you wear contacts and take Pyridium it may turn your contacts orange. **

TENS Unit: The TENS unit is an electronic pain-killing option. A TENS unit is a machine which is connected to sticky pads you place on your body at different pressure points. The machine sends electrical impulses to the skin. A PTNS stimulator may also be used, which has varying degrees of success. It is similar treatment to TENS, except there is a needle used instead of sticky pads. **There are many, many other forms of pain control. These are the most commonly non-surgically used pain control methods. In the surgery category I will be adding more pain control methods. ** I have been on many different kinds of pain control medications, and used many different pain control methods. The different narcotics I have been on are: hydrocodone, oxycodone, and methadone. I take the methadone regularly and am currently taking the hydrocodone every 6 hours. The methadone made me tired. You do build up sort of a resistance to it (same with hydrocodone), the only major side effect that really bothers me is the sweating. I sweat a lot, it is a really big pain, and it can be embarrassing. Most of the people close to me understand. As far as anyone you may pass in the store, you probably won’t be seeing them ever again, so what does it matter? But it does take awhile to get used to. I have used Valium, with little success, it worked for a while then it just really didn’t help that much anymore. I am currently on the muscle relaxer carisoprodol (Soma). It is helping some, but it makes me extremely tired! I have used the urinary anesthetics. Pyridium helped a lot; it did relax my bladder a lot and helped decrease the frequency. It did turn my urine orange and I had to be careful with my underwear and clothes. A simple panty liner will help with that. TENS units help also. I used one for a short time while in physical therapy, and it helped while I was there and for a while after. It didn’t help for an extremely long time, however it can be prescribed to you so you can get one at home in some cases. It would have to be something you discuss with your doctors.

7. H2 (histamine) Blockers: H2 blockers help to block H2 receptors in the stomach. It helps reduce stomach acid secretions and stomach pain. Cimetidine (Tagamet) has been used in studies, and has been shown to reduce bladder pain. No one is certain why it helps with IC but in 2 studies (one with 9 patients and the other with 14) it was shown to be effective for 40 to 60% of the IC patients. Other H2 blockers commonly used are ranitidine (Zantac), nezatidine (Axid), and famotidine (Pepcid). Side Effects: include headache, tiredness, dizziness, confusion, diarrhea, constipation, and rash. I am currently taking Tagamet and I can’t really tell whether or not it is helping. I’m on so many different types of medications it’s hard to tell what is doing what. I haven’t had any bad effects from it. **The next few categories I’m not very familiar with. I have not used the medications for IC treatment. If anyone has anything they would like to add about the medications listed let me know and I’ll add it.

8.Leukotriene Inhibitors: leukotrienes are substances produced by some immune system cells, and mast cells, which promote inflammation. These are fairly new medications and are commonly used to treat asthma and allergies. They include the prescription medicines: Montelukast (Singulair), Zafirlukast (Accolate) and Zileuton (Zyflo). Some studies have shown leukotrienes in inflammation on the bladder in IC, and other studies have shown the receptors in the bladder muscles of IC patients. A study in Denmark showed patients who took Singulair for 3 months showed reductions in frequency and pain.

9.Alpha-Blockers: Some alpha-blockers are used to treat prostate enlargement in men. Some of the drugs are: Doxazosin (Cardura), Terazosin (Hytrin) and Tamsulosin (Flomax). Research has shown that many men with condition also have glomerulations or Hunner’s Ulcer’s on the bladder walls. Some researchers also think that IC and chronic prostatitis in men may be the same. Some doctors are starting to try these medications on women with IC.

10. Urinary Tract Antispasmodic: This prescription medication helps to relax the muscles involved in urination and can help with urgency, frequency, and pain. Men with prostate enlargement and people with glaucoma should not use it. The most commonly used prescription is Flavoxate (Urispaz).

11.Prelief: This over the counter medication is the only acid fighter that will take out the food acid of what you are eating. You can take two pills before you eat (literally right before you take a bite) and it will help tremendously with the acid. We all know that acid is a huge problem for IC patients. I used prelief a lot (I had to get it ordered through a local drugstore), but I could eat spaghetti sauce, and drink coffee again! I didn’t have any problems with pain from acidic foods when I took this before I ate. **All of the medications listed above are in general categories that help to control IC. Other medications will be listed under the category Medications 2. Included will be the name, brief definition of med, and some side effects. These other medications are not the most common used for IC but can help. One thing I have found out is any medication that you think can be used for one thing (ex: stomach medication) can be used for multiple other reasons! **