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My Drugs

okay, today is March 8, 2010 and I have now added another drug to my list of medications I’ve taken, as well as another drug they’ll be giving me in the coming months. I thought I would type out a list of all my drugs to better give an idea of what some people might expect to be on at some point.

Mesalamine or Asacol/Pentasa/Lialda:  sulfa-free 5-ASA anti-inflammatory used to treat swelling and inflammation of the colon or rectum; also used as a treatment to maintain remission and to try and prevent colon cancer.

-I take the maximum 12 pills a day – 6 in the morning, and 6 at night.

– I have also been prescribed the liquid form of Mesalamine for use as a RETAINING ENEMA. before bedtime, you insert the medicine via a plastic bottle with a built in tube/funnel thing into your rectum and go to sleep. The objective is to retain it as long as possible so that it coats your intestinal wall allowing it to heal.

Bentyl or Dicyclomine:  antispasmodic and anticholinergic; used for the treatment of functional bowel/irritable bowel syndrome and to help prevent the colon from spasming uncontrollably.

– I use these as needed, but the prescription says to take before meals and at bedtime.

Hyoscyamine: works by decreasing the motion of the stomach and intestines and the secretion of stomach fluids, including acid; also used for the treatment of a spasming colon.

– again, I use these as needed – typically when I’ve grown immune to the effects of Bentyl.

Lomotil or Diphenoxylate Hydrochloride and Atropine Sulfate:  prescription strength anti-diarrheal medication; works by slowing down the movement of the intestines and is narcotic based.

– I was just prescribed this today (03/08/2010) and the directions say take one tablet 3 to 4 times a day as needed. I’ve taken one and it actually helped slow down the amount of times I ran to the restroom.

Imuran or Azathioprine:  an immunosuppressive antimetabolite that works by weakening your body’s defense system (immune system) – tries to prevent your body from attacking itself when other medications don’t work.

– I haven’t been on this in almost a year, but when I was on it, it didn’t work too well.  I think I took 2 or 3 a day. It also required me to get my blood checked every couple of weeks because it’s an immunosuppressant that can cause all types of other problems. They mainly were monitoring my liver levels, but of course, everything else was fair game also.

Prednisone or Steroids:  in a class of drugs called corticosteroids. Prednisone prevents the release of substances in the body that cause inflammation. also, has numerous, very unpleasant side effects.

– I’ve taken it both orally and had it injected via IV while in the hospital at the highest doses tolerable. in short, I HATE THIS MEDICINE MORE THAN ANY OTHER.  not only did it NOT work for me, it caused side effects that I’m still fighting with today.  the dosage varied depending on the severity of my flare-up.

Ambien or Zolpidem:  used to treat sleeping problems caused by numerous ailments.

– after my third hospital stay, I was prescribed these to help me sleep better because sleeping through the night became a total chore. I was up several times a night running to the bathroom. they aren’t a necessity, but it was nice.

Hydrocodone or Lortab/Vicodin/etc:  semi-synthetic opiod; orally active narcotic analgesic (pain reliever) and antitussive (cough suppressant); used to treat pain.

– since I’ve been diagnosed 5 years with an acute case of pancolitis (ulcerative colitis that affects the entire large intestine) Tylenol no longer works when I’m in pain.  The directions say to take 1 – 2 tablets every 4 – 6 hours as needed for pain but I only take them when I have no other alternative.

– taking only a minimal amount is best because taking too much can cause the bowels to slow down too much, thus creating a new problem. another possibility when IBD patients take narcotics is the potential to develop Narcotic Bowel Syndrome – this means the intestines become physically dependent and rely on the pain killer to function normally or function at all. that can be really dangerous on top of any other mental addiction possibility.

Remicade or Infliximab:  blocks the effects of TNF, a substance in your body believed to play an important role in the inflammatory process of ulcerative colitis. it is administered intravenously through an IV in the care of medical professionals.

– normal dosage is 5 mg/kg every 6-8 weeks. cost is anywhere from $19,000 – $22,000 a year per person, respectively.

– right now, I’m on the maximum dose allowed, 10 mg/kg, and the frequency is every 4 weeks. I’m completely double the recommended dose because my case is so severe.

**The next 2 drugs I have not yet taken, but are in my near future so I’m going to go ahead an add them.

Cyclosporine or Sandimmune:  this medication is used to prevent or treat organ rejection in transplant patients. It has also been used with success in a variety of illnesses such as Crohn’s disease and Ulcerative Colitis. It is an ANTI-REJECTION drug that resembles chemotherapy treatments.

– given by injection into a vein over 2 to 6 hours and under VERY close medical supervision.

– if/when I get it, I will be admitted to the hospital and it would be an inpatient procedure over the course of about a week because any slight change in organ and blood levels can be fatal. it’s better to be administered the medication at a hospital that has experience in dealing with the attention it needs.

Prograf or Tacrolimus:  another anti-rejection drug; used to suppress the inflammation associated with ulcerative colitis, a form of inflammatory bowel disease. Although almost exclusively used in trial cases only, Tacrolimus has shown to be significantly effective in the suppression of outbreaks of UC.

– not sure how this would be administered to me yet.

– one of my extraintestinal symptoms caused by my UC is a condition called Pyoderma (the disease is thought to be due to immune system dysfunction, and particularly improper functioning of neutrophils. At least half of all pyoderma gangrenosum patients also suffer from illnesses that affect their systemic function, like UC or Crohn’s) Luckily, the severity of mine is next to nothing – it just looks like a medium sized pimple on me (google it and the pictures are shocking and very severe).  Prograf is supposed to treat it well – and Remicade is also used in treatment for it.

That’s all I can remember for now… there was a couple of others, but the names of them have skipped my mind at the moment.  All the drugs have given me various and numerous side effects that I still battle with on a daily basis.  I thought this might help give a heads up as to what you can potentially expect to be prescribed, or even bring to the table for discussion between you and your doctor.  Keep in mind, most people will do fine with Asacol/Pentasa/Lialda or something along those lines – but if your case ever gets as acute and severe as mine, I hope this helps ease any worries you might have. As always, feel free to ask me anything about the meds and I’ll be delighted to discuss them further!!

5 thoughts on “My Drugs”

  1. I remembered a couple of other medications I forgot to add originally…

    Promethazine or Phenergan: post-operative sedative and an anti-nausea medicine

    – I take 1 20mg tablet as needed; also, I’ve been given it through an IV as well when I’m in the hospital. it works really well, but it causes sclerosis of the veins and can be very harmful to your veins (I am starting to attain some of those risks right now. it’s very difficult to find veins to use for IV’s as well as to draw blood from.)

    Zofran: another type of anti-nausea medicine

    – I’ve gotten this through IV while in the hospital.

    Dilaudid: narcotic pain killer. more potent than morphine; basically a legal, supervised form of heroin.

    – Whenever I’m in the hospital, this is what they have to use to relieve my pain because morphine no longer works for me.

  2. Wow! I really feel lucky that I have been able to keep my UC in check with only 2 meds, and it’s been 9 months so far with NO flare-up! I started on a regimen of 60mg of prednisone daily plus the max of Asacol, 3,600mg. After 4 months, I was able to taper down and completely come off of the prednisone. I am still on the Asacol, but down to 1,800mg daily. When I asked about when I’d be able to taper completely off of the Asacol, the doctor pretty much said it would be to my own risk to come off it…pretty much ever, because of the chronic nature of UC. My husband and I are trying to have a baby now, so I will remain on Asacol through that, so that I don’t have to deal with UC flare-ups in addition to everything else my body will go through. But I don’t really cherish the idea of being on Asacol the rest of my life either, so maybe after pregnancy I will experiment with going drug free. But the doctor did warn that it’s possible that if I do go off the Asacol and have a subsequent flare-up, the same med regiment may not work on me again.

    It’s frustrating that they don’t really seem to have a lot of answers as to long-term solutions. I asked about diet, and she said that even with a good UC diet, most people will still have flareups at some point if they are not on medication. Hmph.

  3. Contrary to what you said, Dilaudid is actually hydromorphone. I’ll let you use your context clues there to decipher what that entails… Also; HEROIN was originally created to get people off of MORPHINE. It is a semi-synthetic opioid synthesized from MORPHINE. Up until the early 1900’s HEROIN was a marketed as a safe alternative to MORPHINE by Bayer until they realized that HEROIN actually metabolized very quickly into MORPHINE, essentially making it a quicker version of MORPHINE. Just thought you should know… BTW I have UC as well and I have frequent trouble with abdominal pain. All they’ve given me is Asacol and Canasa(yay, not). Any suggestions to get the right medicine for pain? It is not frequent but sometimes my whole body just feels achey and I need something to take the edge away, because when it rains it poors if you catch my drift… THANKS

    1. How very astute you are. But I do believe we are all intelligent individuals online, perusing these posts. You need not correct the young lady, the information comes across quite clear if not precisely fact by fact checked. Good day to all and good luck. All who suffer will be in my prayers.

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