Next step is remicade....help

Just a little bit of background, the only thing that has worked for me is Prednisone and obviously I can't take those forever. Lialda, Asacol, and Colazal all made me worse. Rowassa worked for a couple months and then I could no longer hold it in. Next step is Remicade.

My main concern about remicade is the fact that it effects the immune system. I am a nursing student, I am around sick people all time. I also get cold sores, and I don't feel like having a cold sore outbreak every month. I feel like long term, this drug will take a toll on my body. I am only 20 years old. Also, I lose my dad's health insurance after I graduate in two years.

I need some advice, thanks.

I have not tried cortenemas, 6mp, or Imuran. I have an appointment on Jan. 6th where I plan on discussing other options. He just seems so set on Remicade and he thinks diet and probiotics are "crap." I kind of want to get some sort of food allergy test done to see if there is a food I have an intolerance to.

I am down to 7.5 mg. He told me to stay there until my appointment. I stopped Colazal today. Hoping I have a little improvement from stopping that, because oh my god...I did a complete 180 when I started them. I went from doing good on the steroids (1 BM/day) to full blown diarrhea ten times a day, mostly at night. I didn't sleep for more than a half hour at a time last night.

bostwis1, I kind of have similar experience as you, I don't seem to have much luck with the standard meds either, no idea if they do anything, at this point even pred doesn't help much to stop my inflammation. I was recommended Imuran which I may have to do.
I would consider the cost of the drugs you need to take when talking to your doctor, look at the monthly cost of taking remicade or imuran, look at possibly getting it from Canada, it is usually way cheaper. Factor in blood tests and how often you need them with these immune suppressors.

If you can find a natural path doctor with good reputation of success, that is always an option as well.

Bostwis1. I commend your caution regarding Remicaid. I, like Sibby, am from Canada, and my "specialist" is suggesting Imuran for me. (I'm so sorry Sibby, and mean no disrespect, but your reply sounds a bit like a commercial for a pharmaceutical company). I have been flaring again for almost 5 months after a 4 year remission, treating with Cortizone enemas nightly, ASA enemas daily and asacol 2x4/daily, as well as various supplements and alternative therapies. It's been a long, tedious process, but I am staying calm, and being patient, and refusing to cave into what my specialist wants, which is to get me out off of her long list of patients, by putting me on Imuran, and having me believe that I'm "cured". I don't want to be a slave to having to go in for blood testing every month of my life, and constantly worrying what else my now compromised immune system won't be able to fend off. The practitioners of western medicine would have us believe the are the only answer to all our woes and prayers. (Here in Canada, they have the monopoly, being a government funded body) Don't believe everything they tell you. Investigate. Explore. Research. Stretch your scope of what you believe could be possible. There are alternative therapies that work, that don't just mask symptoms or undermine your own body's ability to heal itself. Your GI's thinking that "diet and probiotics are 'crap'" only illustrates small mindedness and lack of care. Wishing you such good luck, and above all, peace within.. It's the very best medicine we can use on ourselves to heal.

Sibby, I agree with you that everyone needs to decide for themselves what to take to get relief from the debilitating effects of this disease. However, there are too many people who are led to believe that western medicine is the only authority regarding health in general. You say you "did all the research" and that you talked to "other GIs, your GP"... Who else did you talk to when doing "all" your research? Did you research Holistic medicine? Chinese medicine? Emotional release therapy? Not to mention the many many alternative therapies mentioned on this site. That is a LOT of research. I'm not sure how long you have suffered with this disease, but I have have found, the longer I've had it, the more research I've done, the less I know for sure. I have found it's best to keep my mind open to any and all possibilities for relief, and NOT depend on any ONE course of therapy.
As for not being a slave to medications... correct me if I'm wrong, please, but once you begin a course of Imuran, isn't it for life?
As for "hardly see how taking a blood test every month would make someone a slave...." Obviously you live in a city. In Canada. Some of us live in the middle of no where, where roads and weather conditions are not conducive to making a quick trip into the lab for testing...and some of us don't live in Canada where we are covered by a medical system. Some of us have hopes to travel for more than one month at a time.
You are right. We DO need to fully understand all the implications of the medications we choose, and research all aspects and all studies,making sure the information supplied is by independent researchers who are not funded by pharmaceutical companies.

I haven't noticed that I get sick more often, even though I am on Remicade.
I spend time in the winter where they give public tours and so am exposed to lots of snot-nosed school kids...but I do just fine.

Even if I caught a few more colds etc., it would be so worth it!

Thanks for all of your replies. I've been away from the computer for a few days and was surprised at all the posts. I've decided to try eliminating gluten from my diet and if that doesn't work I'll be going on Remicade.

I've been on remicade since July 2009, I was first diagnosed in March 2009, so it went quick for me. I have a colonoscopy in Feb. to see if it is healing my colon. Remicade has helped my symptoms but has not reduced the inflammation in my colon, so the docs don't want me on this if it isn't helping my inflammation.  I will than try alternative treatments. I will do surgery as my last option. I would try eveything else before remicade. I've had reactions from heatburn to a rash, I take 6 hours at each infusion and they upped my dose in Aug. to 7.5 and since than I've had pink eye, strep throat, and two colds, my son is sick now and I'm sure I will get that. I'm not trying to scare you but it is a strong drug. I tried all the other drugs before remicade and I wish I tried alternative stuff before it also.  I stay home and I volenteer one day a week at the kids school, none of my kids had pink eye or strep throat before I got it.  I notice I've been sick more. Good luck it is a hard decision.

Ive been on Prednisone, Asacol and Remicade for a while now and cant remember the last time I got sick. I do work out regularly and take my vitamins and supplements.

I used to get sick atleast a few times a year before but I didnt work out much. I work outside in the winter as well without a sweatshirt. Id be more worried if I worked in an office couped up with people coughing and blowing their noses everywhere.

If you're truly worried about the whole insurance thing and side effects, you might need to look into surgery before your coverage runs out. I would give atleast 1 full year for recovery and other issues that can arise from that as well.

Post Edited (Doz79) : 12/28/2010 12:02:30 PM (GMT-7)

Christine1946 said...
Doz, how long have you been on prednisone and what dose? I was prednisone dependent for two years prior to my operation. That drug does horrible things to your body. My GI doctor calls it the best, worse drug. It gave me osteoporosis and high blood glucose levels not to mention my blood pressure was elevated too. I am certain if I didn't have my operation last June that I wouldn't be alive to see 2011.

7 years..ish. Dosage varied at the start from 20-60mg mainly. The last two years I was able to get off Prednisone for a short period of time but its been 5-10mg doses. Im fairly certain my bone density is shot but I never opted to take the test. Its just going to cause more worry about a situation I have no control over. I do take all sorts of multivitamins and supplements daily and have been on track to get surgery soonish as well.

I also plan on taking GH + test when Im all healed to make up for some of the damage prednisone has caused.

I did get sick when I was on Imuran and Prednisone combined for some reason. I just remembered that.