Sunday, May 8, 2011

Medications I have found to be helpful for the pain and symptoms caused by IC

I am currently on 30 medications due to my various problems but I am just going to post the medications that are specifically helpful to IC and the pain caused by it.  I hope this is helpful.  Please consult with a doctor before trying any of these medications, even if they are over the counter:

1) Elmiron 100 mg 3 x per day - This is one of the main lines of treatment used for IC.  It comes with many horrible side effects, but I promise most of them die down in about 6-10 months.  However, I will be straight with all of you about the reality of these medications.  I lost about half of the hair on my head in the first 3 months, coming out in clumps and handfuls.  I also felt like I had the flu for about 6-8 months 24/7 along with some other persistent unpleasant symptoms.  Yes, these symptoms were horrible but the benefits are worth it.  It takes several months to see your IC symptoms improve, but they gradually do, especially in terms of urgency and frequency, and even if they don't, keep taking it because it improves the health of your inner bladder which can be seen by your surgeon physically through a bladder scope.  We need this medication and I know some women who have had wonderful success from it alone.  None of the realities of IC are pretty but you will benefit from this medication in the long run and to me, it is absolutely worth it.  It is a real option that we have and I can't stress that enough.  Since it is difficult to absorb, you must take it at least 2 hrs after you have eaten and at least 1 hour before you eat.
2) Amitriptyline 110 mg per night - This medication reduced my bladder and pelvic pain, especially neuropathic pain, an incredible amount.  It soothes the overall pain --- especially burning and stinging pain --- in my inner bladder, helps my pain from damaged nerves, fibromyalgia, etc., reduced my urgency and frequency profoundly, and it is the only reason I can sleep at night.  I started off on 10 mg per night but thankfully I have a wonderful doctor who worked with me closely to find the optimal amount.  Since I have other nerve problems and fibromyalgia, other IC patients may be okay with a much lower dose.  Also, since it was originally used as an anti-depressant/anti-anxiety medication until they found out how amazing it was for nerve pain, it does have an element to it that helps you deal with the emotional rollercoaster of living with IC.
3) Internal Diazepam 5 mg 1-2 x per day - This is a treatment that was originally tested by a doctor in the United States who had incredible success with one of his IC patients.  I did not find the same success but it did help me a lot when I first went on it.  Now I no longer use it everyday, just when I'm having a really bad pain day or I'm in a flare.  The best way to make it into a paste that will stay inside the vagina long enough to work is to crush it up very finely, use one small drop of water and lidocaine 2% gel.  This is not a medication to take orally - only take it by inserting it into the vagina.  Many women with IC acquire vaginismus and that is also helped by this medication.
4) Stool Softeners - Docusate Sodium Capsules USP 200 mg per day - With the IC diet, we do not get enough fibre and our medications usually cause constipation.  Constipation causes much more pelvic pain so it is good to take stool softeners to help counter that.
5) Cetirizine 20 mg per day - This is an antihistamine and has been very soothing to my inner bladder, so much that I am now on a prescribed amount everyday.  I have tried other antihistamines but none of them compare to this one.  It is available over the counter as well as by prescription.
6) Uracyst 20 mg 1-4 x per month - This is a medication that is instilled through a catheter into the bladder; a bladder instillation.  This acts as a temporary replacement GAG layer (inner bladder lining) and is incredibly soothing and helpful and has enabled me to expand my diet 20 x more than I could have without it.  It also improves frequency, urgency, pain, stiffness, incontinence, ability to urinate, emptying the bladder and bladder spasms.  It is basically a gift from Heaven.  I know that is it not available in the US yet, but it is under review so I hope it becomes available very soon.  At first you get the instillations once a week for 6 weeks and then spread them out more and more.  I have a particularly bad case of IC so when I'm great I still get them about once a month.  During flares I get them more often and they greatly speed up the healing process.
6.5) My surgeon now mixes my Uracyst instillations with Lidocaine 1% and it completely numbs the area which is amazing - a really nice break from the pain and it helps to break the pain cycle to bring your overall pain level down, not just in the short term.
7) Pain Cream - Ketoprofen 7.5% + Amitriptyline 5% + Lidocaine 5% 1-3 x per day on painful area (mostly pelvis) - This pain cream is amazing.  It was given to me by the pain clinic and I have recommended it to several people with all different kinds of pain.  I have found this cream to be much more effective than narcotics and other pain killers.  There is a specific pharmacy in London, Ontario 'Commissioners Pharmacy' that compounds it all of the time so the price is the best you'll find and it actually absorbs properly.  Having it compounded at another pharmacy will be more expensive and it may not work as well, but if that's the only option you have, I would still give it a try.  It is about $120 for 100 g at Commissioners Pharmacy.
8) Lidocaine 1% injections 1-14 injections per day - This medication is local anesthetic and is the one that improved my functionality more than any other, especially in terms of sitting in a chair, but it is a very skilled and risky procedure.  I was trained for over a year by my surgeon to give myself my own lidocaine trigger point injections.  Not only do these injections numb the most painful areas, they also help to break up the muscle knots in the pelvis.  At first I had these trigger point injections done by a surgeon and there are very few that do them so you may have to search.  Trigger point release in physical therapy is another avenue that works but it is a much more painful and lengthly process that really inflames the area.  There is a big danger of hitting a blood vessel, etc., or doing too many and causing heart failure with these injections so PLEASE, even if you can buy the necessary items over the counter, DO NOT try this yourself and remember it took me over a year of begging, learning and training before I was allowed to do these myself.
9) Dimenhydrinate Injections 50 mg 1 ml as needed - I was originally given these injections to stop the vomiting/fainting cycle I get into from pain but remarkably they help my IC pain as well - my doctor from the pain clinic found this very interesting but it is another antihistamine and antihistamines have been very successful with reducing IC pain so she gave me the go ahead to use them more often, even everyday.  These are very easy IM injections to give yourself and I'm sure your doctor or nurse would be glad to show you how to do them properly.  There is a risk of addiction so please be careful and talk to your doctor about what would work for you in terms of dose amount and frequency.
10) Ibuprofen 600 mg as needed - I'll be straight with you once again, the Elmiron causes horrible headaches, and that is one side effect that never went away.  I need 600 mg of ibuprofen to help usually at least once a day but the thing that helped most for the Elmiron headaches was actually Amitriptyline.  However, even with this help, I still need to use ibuprofen.
11) Lidocaine 2% gel as needed - This is over the counter and is a wonderful topical anesthetic.  I use it to numb my urethra before instillations and also when I get irritated from toilet paper, etc., and sometimes inter-vaginally to help with pain from vaginismus.
12) Statex 10-30 mg as needed - I only take short-acting morphine when it is absolutely needed and not even close to once a day.  This is usually only used during flares and never back-to-back (e.g. every 4 hrs).  Stay away from narcotics as much as you can because people with IC & Fibromyalgia usually become physically addicted/used to a dose and need more very quickly.  I have tried several narcotics and long-acting 12 hr and 24 hr narcotics and have found them to be evil and wretched things.  There is no shame in using them when you absolutely need them, or no shame at using them at all really, especially if they work for you, but I have found that using them few and far between is the best way because then you are not dependent on them so when you do need them they actually help.
13) Senkot-S as needed - This is a laxative/stool softener combo and I always take one on any day that I use morphine or if I am constipated.  It helps and has not hurt my inner bladder at all.

So that is what I am currently taking for IC specifically.  Please post any questions or comments you have for me and if you decide to try any of these, please let me know how it goes.  Working closely with a doctor you trust is so essential to success with treatment because everyone is different and finding the best medications and dose for you is extremely important to getting help for the myriad of symptoms that come with IC.  I wish you all luck and hope that this information was helpful.  I have tried most medications so even if you have a question about a medication that is not on this list, please feel free to ask.  Thank you and take care.  :)

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