A list of the drugs that I was prescribed between October 2008- August 2009:
October 2008
Right after my diagnosis I was initially prescribed Asacol upon leaving the Palo Alto, CA Colonoscopy Center.
October 2008
After one week of starting Asacol, my symptoms were not improving at all and were getting worse, so I was then prescribed Prednisone from the same doctor who conducted my colonscopy and who diagnosed me with Ulcerative Colitis.
November 2008
After about a month on both Asacol and Prednisone, with my current gastro doctor, I was instructed to stop the Asacol since it was not helping and instructed to use Colazal along with the Prednisone.
November 2008
Towards the end of November, my gastro doctor discovered via a stool sample that I had also had a bout of C-Diff going on. On the Sunday after Thanksgiving, he called me to tell me to go straight to the 24 hour pharmacy to pick up some Vancomycin to combat the C-Diff. (According to wikiepedia, this antibiotic is considered a “drug of last resort”, this basically means it is super strong and use only if you need to.) Well, I am happy my doctor wanted me to use it. I was in a really bad way that November, and I was for a little while hopeful that the C-Diff was the problem and maybe I didn’t have Ulcerative Colitis afterall. Well, I still did have Ulcerative Colitis, the C-Difficile was just another added bonus. According to the Mayo Clinic, C-Diff is: Clostridium difficile, often called C. difficile or “C. diff,” is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon…
December 2008
I was now being prescribed an additional added bonus to try and curb my symptoms for Ulcerative Colitis, in addition to the Prednisone and Colazal, my doctor prescribed Rowasa enemas.
January 2009
At the very beginning of the year, I came back from a New Year’s vacation to Mexico, which was mostly spent in bed, it turns out my C-Diff came back again. This time my doctor prescribed Flagyl which ultimately took care of the C-Diff once and for all.
January 2009
As the symptoms were not working out, my doctor wanted me to end the Colazal as it was not doing anything positive. So, he prescribed Sulfasalazine along with the Prednisone.
January 2009
Towards the end of the month, symptoms were still the horrible, so now it was time for the biologics. I took my first Remicade infusion on January 26th at the Palo Alto Medical Foundation’s new building in Mountain View, California(The home of Google.) This drug is administered via an IV(a needle in your arm.) What was interesting is that I was in this nice room with many other patients who were also having IV’s put in their arms. I was by far the youngest person in this room on all three occasions. The typical patients that I noticed were elderly patients who were having all types of Chemo drugs and other infusions pumped into them. The process takes about 3 hours from beginning to end, but give yourself 4 hours to cover any delays. One time for example, the paramedics came in to tend to a patient who was going into some type of cardiac arrest… The nurses who worked at this particular location are all very very very nice people. As I was noticeable not excited about the infusions, they were able to help me get through with flying colors.
As for the outcomes from the medications. For me, the first Remicade Infusion was amazing at first. Within one day, I felt like I was cured.(hard bowel movements finally, much less bleeding, less cramps etc…) Unfortunately, after about 10 days, the symptoms came back, and the second infusion after 14 days had very little effect, and the third infusion had no effect at all. So along with my doctor, we decided to stop the Remicade. Just an interesting side comment on Remicade- IT IS VERY EXPENSIVE. The infusion center billed just under $11,000 per infusion, and my insurance company reimbursed them about $4,000 each time per their negotiated rate.(I definitely added to the healthcare problem in our country, while I helped out some drug companies at the same time…)
February and March 2009
I continued on Sulfasalazine throughout my Remicade infusions, and the same with prednisone. My second and third infusion were in February and my final on March 9th.
April 2009
This was a big month for me. This was the month that I started taking another immune suppressant called Humira. This medication is taken with a subcutaneous “pen” that has a sharp small small needle. It is about 1 ml and is injected just below your skin. I started by taking 4 pens (4 of the 40mg doses) and I did this at my doctors office with my doctor’s nurse. She basically was showing me how to do this so I could do it on my own in the future. It’s not a big deal.
May 2009
In May is when some major roadblocks came up for me. Very quickly I began having severe pain in my upper body and elbows. There were times when I had to get pushed out of bed by my wife to start my day. I was instructed by my physicians to go back on a heavy dose of Prednisone. 60mg to be exact. There were large pimples growing and exploding all over my scalp. A decision was made to stop the Humira temporarily as it was being thought that the side effects may be from that drug. I was prescribed Vicodin as a pain reliever, and I did have to use that quite often in May and June.
June 2009
After tapering off the Prednisone, I decided along with my gastro doctor to give the Humira a second chance, my colitis was a bit more contained and we thought that the Humira from a month before was the reason for the slight colitis improvement. Unfortunately, a week after trying Humira again, the nasty side effects came back very strong. Sometime during the month of June, my dermatologist from the Palo Alto Medical Foundation prescribed Clobetasol for my skin. This I have learned is pretty much the most powerful steroid cream that physicians prescribe. The skin problem was labeled as psoriasis, and it looked like hell. Large skin flakes were peeling off my body all day long.
July 2009
July 7th was the last day I took a pen of Humira. I kept on using the steroid cream on an almost regular basis, but there was nearly no signs of improvement. At this point, I was weaning off the heavy dose of prednisone, moving down about 5mg each week. Colitis was active, and my joints were not working and causing heavy pain at times.
August 2009
Tapering off prednisone was the theme for this month as well. I was near 10mg come the end of August. The biggest part of this month was completely changing my diet on August 11th, hence the true beginning of my recovery. Also, the reason for why this website was/being built.
September 2009
Towards the middle of September, I was down to 5mg of prednisone per day. I was a bit nervous to go off it completely. Especially after taking some type of pills every day now for nearly a whole year. I was getting a few weeks away from my one year anniversary of being diagnosed. The joint problem was still there, but to a much less degree compared to over the summer. In fact, the joint pains were sporadic at this point, not an everyday thing anymore.
October 2009
About one week into the month, I stopped taking all medication completely. Wow, this was an amazing change in lifestyle. When you go an entire year of taking up to 16 pills per day, and then all of a sudden you don’t need to go to the medicine cabinet for your morning/lunch/dinner pills… its a GREAT feeling.
November 2009
This was a very health care system filled month. On November 2, I flew off to the Mayo Clinic to get a full system evaluation from the premiere medical clinic in our glorious country. I was prescribed some new cream from Dr. Brazeal who has got to be the hottest doctor I have ever seen. Also, I was prescribed some topical Cipro HC for an ear infection that was said to have happened due to infected skin from psoriasis in one of my ears. I had been feeling some strange things in that ear for quite some time, probably the past two months.
December 2009
No medications being taken at all. ZERO. All is running well, minus lingering skin problems.
January 2010
Let me assure you, I am definitely starting the New Year out drug free, no medications for the GI system. Only a bit of steroid based topical lotion for the ever present psoriasis skin problem that is believed to be one of the side effects of the Humira. Also, I am pleased to note that my joint pain is nearly all gone. Only a few times a week do I feel pain in my upper chest area.
If you have any ideas or comments on anything, please post them below or email me at ihaveuc@ihaveuc.com
January 22, 2010 at 11:59 pm
Oh my god man I found your video on youtube and when I came to the website I started on the first tab and continued from there and its a mirror imaage of my experience with UC. From what you said about prednisone being a miracle drug to begin with, and the first infusion of Remicade making a solid bowel movement, to the immune suppressant making you break out. My first Remicade infusion went great for ten good days I was almost normal the second infusion did less and the third did nothing each subsequent infusion did nothing. I took an oral immuno-suppressant and not long after my skin began to get dry by the time another month went by I had broken out in a poison-ivy like rash on my arms and forehead. I was diagnosed at 19 im 23 now almost 24 and hoping your diet helps me out reading your background has me excited about it.
January 23, 2010 at 1:43 am
Hey Man, we got to talk. You are freaking me out, it’s crazy how both of us aren’t the only ones with the same exact stories. I will shoot you an email, thanks for the post!
February 1, 2010 at 1:23 pm
Wow! I guess I am lucky that I responded so fast to the medication once they actually put me on it after my colonoscopy (8 months into my ordeal of severe and urgent stomach pains 24 hours a day). They prescribed me with asacol and prednisone, and I felt better immediately and have not had a flare-up since then (June 09). I tapered off the prednisone at the end of October and am still taking the asacol at 3600 mg a day. I am hoping to start tapering off that after my next appointment with the GI doctor this month.
April 22, 2011 at 8:37 am
So how exactly did you start getting improvements? Was is just the diet alone?
April 25, 2011 at 1:19 pm
Hey Daniel,
I started getting improvements from a combination of starting the SCD diet, and in hindsight, I believe the round of prednisone which I was on when I started the diet also contributed to my improvements and colon healing. I later stopped the prednisone and continued on the diet which continued to help. So in the end, the combination I believe is what helped me to get things going in the right direction.
August 7, 2011 at 7:19 am
I’m currently trying to get through my 4th flare up in 11 months. On the throne right now… Each flare up is cleared up with Prednisone.
Quick Timeline:
September 2010 – First UC flare up began during the worst sinus infection I’ve ever had. It was maybe 2 weeks after beginning Levaquin (strong antibiotic) when UC symptoms began.
October 2010 – family doctor had theory that the Levaquin caused an imbalance between the good and bad enzymes in my colon.
November 2010 – GI doctor had me take Lialda. This did not work well for me. Experienced significant gas pains on top of the already existing UC symptoms.
December 2010 – GI doctor switched me to Asacol (4,800 mg / day) & first round of Prednisone (50 mg day for a week reducing 10 mg each week).
January 2011 – (January 1st to be exact) After dropping to 155 lbs from my normal/vegetarian weight of 185 lbs a corner was turned. Began feeling much better and by mid-January had solid BMs without blood. Continued taking the Asacol (at same dose) although found out insurance did not cover so had to pay out $700/month. Began working out again and getting really close to normal weight.
March 2011 – 2nd flare up began cleared up by Prednisone (cleared up within a couple weeks with Prednisone (beginning with 50 mg day). Lost ~10 lbs.
May 2011 – 3rd flare up began cleared up by Prednisone (cleared up within a couple weeks with Prednisone (beginning with 40 mg day). Lost ~10 lbs.
July 2011 – 4th flare up began cleared up by Prednisone (began by taking Prednisone at 30 mg day). Still awaiting things to clear up…
Other Comments & Thoughts:
– Not convinced it was Levaquin that set off UC issues… Curious if post-nasal drip (excessive infectious mucus) flowing down back of throat constantly during sinus infection and general bouts with allergies into stomach then digestive system could have kicked off first UC flare up. Have had a lifelong combined history of allergies, sinus infections and abdominal issues (first diagnosed with “Non-Alcaholic Fatty Liver Disease” or NAFLD in 2006 at age 30). Can’t help but wonder if adding infections nasal mucus into digestive system has caused historical abdominal issues.
– Diagnosed with Primary Sclerosing Cholangitis (PSC) liver disease November 2010. Most official resources (WebMD, medical journals) associate UC has a secondary condition from PSC. I do wonder if this indeed the case of if, instead, UC causes PSC.
– Each flare up following the first seem to come on the heels of a ‘week from hell’ where work had me stressed, couldn’t sleep, sinuses were bad, consumed alcohol (whether it be several glasses or even sips), and being sporadic with taking the Asacol
– Will see specialists Doctor Kwo and Indiana University Medical Center in August 2011 and then Doctor Lindor at Mayo Clinic in September 2011.
Very anxious to get this figured out and learn to maintain it so I can avoid month long flare ups every 2 months. This website is an incredible wealth of information and will certainly be a huge help!
November 2, 2011 at 12:45 pm
Hey, within the last 4 to 6 months i have lost 15-10 pounds because of my UC. I am currently take 4 pills a day of Lialda. A buddy of mine recommended switching to Apreso. does anyone have any other information on Apreso? I tried the SCD but it doesnt seem to help. i’m contemplating on goin on some prednisone and seeing where it goes from there.
January 9, 2012 at 10:22 am
Having been diagnosed in 1998 I have noticed over the years that just before and during a relapse I notice other changes such as the skin around and under my finger nails split and are very dry and painful. My finger nails become grooved and the middle finger nail becomes convex. I was wondering if anyone else has experienced these or other changes.
January 9, 2012 at 10:54 am
Hey Rick,
I too had some issues with skin and finger nails. Actually, after i stopped remicade and humira and was still feeling symptomatic, I had one of my fingernails get all crazy, grooved, and disformed, and the skin on my finger tips and hands, and other parts of my body started cracking pretty bad. Since getting symptoms under control, things have improved, fingernail is back to normal, and skin is almost perfect, except for one small patch under my right foot.
I felt it was due to the medication Humira, as it got bad after taking that, and there are some reports about skin lessions from the use of both remicade and Humira. I hope things get under control for you Rick so you don’t have to deal with additional symptoms,
adam
January 25, 2012 at 5:38 pm
How old do you have to be before you can receive remacide infusions?
January 25, 2012 at 11:43 pm
Definitely a question I have no idea about, my suggestion would be to talk with your doctor about that type of question because you’re doctor knows you best.