Medications

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

25 Responses to “Medications”

  1. BradJanuary 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.

    • adminJanuary 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!

  2. Kimberly PrattFebruary 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.

  3. DanielApril 22, 2011 at 8:37 am #

    So how exactly did you start getting improvements? Was is just the diet alone?

    • AdamApril 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.

      • RabiMay 28, 2013 at 6:07 am #

        I have tried the SCD diet and it seemed to help. But had flare WHILE on this diet. And we are all different when it comes to severity of UC, but the reality is that it comes and goes – stress is clearly a factor for flareups for me! My question is, DOES THE SCD REALLY WORK? Or do we just correlate it to SCD? For example, a flare happens and it goes away (SCD or NOT). So of someone goes on SCD and the flare up goes away, they think it is the diet.

        For me, I had the worst flare up – became anemic and weak and was a horror story for nearly two months. Prednisone literally brought me back to normal in three weeks (40 mg)! I eat everything, and a lot and I am thin dude and am gaining weight. But it removed the UC symptoms like magic. My hope is that it will now go into remission, I get off the drug and eat healthy (Meats, Veggies, reduces carbs and eliminate sugars).

        Will let you know…

  4. KurtBAugust 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!

    • MikeNovember 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.

  5. RickB.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.

    • AdamJanuary 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

      • AnonomousJanuary 25, 2012 at 5:38 pm #

        How old do you have to be before you can receive remacide infusions?

        • AdamJanuary 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.

    • SerenaJuly 14, 2012 at 11:56 am #

      I was so happy when I read your post because I have exactly the same with my middle finger it’s convex but it seems as if there is some sort of extra skin growth underneath and it is super painful! I haven’t gone to the doc, originally I thought that I may be growing a new nail lol! Do you have any remedy for this?
      Thanks
      Serena

    • SerenaJuly 14, 2012 at 11:59 am #

      I’ve had the same experience, also with the middle finger on my right hand, it is super painful! I cannot even cut my nail properly as the skin is split underneath. Did you manage to find a remedy for this?

  6. SlingshotFebruary 6, 2012 at 1:00 am #

    Hi!

    I’m back on Prednisolone 5mg the second time. I’m on a everyday dose 2g+2g Pentasa.

    First time I started with 5+0+0 with -1 per week for 5 weeks.
    Now my second time on a higher dose, 8+0+0 -2 two first weeks then -1 per week.

    As soon as I started with the prednisolone I felt great, both times. I can eat to get a bit thicker again, when I have a brakeout I usually loose 5-10kg.

    So now that I feel the good sides of the medications I have been doing some research on cortisone and cortisol, it’s produced in the Adrenal gland. As I made some further research I found an interesting component in the game Phosphatidylserine (http://en.wikipedia.org/wiki/Phosphatidylserine)

    So you find PS in a lot of intestine food, which might not be the first thing we eat a lot of in our modern society, I have now tried a higher dose of intestine food but since I’m still on Prednisolone I can’t tell no difference yet.

    This is what I’ve tried increase eating and see what results it brings:

    raw milk
    raw eggs (eco)
    raw beef (eco)
    raw chicken (eco)
    raw fish (wild)
    unpasteurised butter
    raw liver
    marrowbone, raw bone marrow
    raw honey
    freshly squeezed vegetable juices

    I’ll be back!

  7. Lucy 27February 23, 2012 at 12:50 am #

    Hello Eveybody!

    I am having big problems since final of december 2011.I was in Hospital for 1.5 month, doctors tryed prednison,chortison,azathyopirin, and now i will have 3 infusion of remicade.
    I still have blood in “my problems” with toylet!aproximatly 3 from 10 are with blood.I dont know what to do,i started with a treatment with Aloe Vera, does anybody tryed this?
    I lose aprox 20 kg in 2 months…i feel very weak and i have to go o work soon and I don’t know what to do to reduce the diarreea…..

    • siobhanJune 24, 2013 at 3:28 pm #

      you poor thing, i have often had to drag myself into work,even when i dont feel well enough.getting through the day feeling sluggish and worrying if i make it to the toilet its an extra stress we could do without,i would be so mortified if i had an accident.plus the chances of me getting to go home to change would be something!

  8. DanaFebruary 25, 2012 at 1:08 pm #

    Thanks Adam for sharing all of this information. My 17 year old son was officially diagnosed with UC just over a year ago and is STILL on prednisone. He’s been on 60mg (high) to 5mg (low), currently on 15mg/day. He’s been on sulphsalazine, asacol, pentasa and is switching today to colazal. We are also trying to swith from prednisone to entocot since he now officially has prednisone dependency. He also was on two rounds of vancomycin for C-diff which he had this past December, but seems to have recovered from. Still constant pain, bleeding, urgency (you understand). Anyway, I would LOVE to get him to go on a diet. He has cut out gluten, but that’s as far as he will go. Do you ever consult with patients? Especially a teenage boy who is sick and tired of listening to his mom?

    • AdamFebruary 25, 2012 at 2:37 pm #

      Hi Dana,

      Oh man, your son’s current deal sounds all too familiar, I think my wife was somewhat in your shoes 3 years ago with me(she probably felt like I was a “no mom listening teenager too”…..(hope she doens’t read this..)

      Anyways, what’s crazy similar is I was diagnosed with C-diff shortly after my diagnosis back in 2008, and it took one round of Vanco and one round of flagyl for me to beat it out. haven’t had any c-diff since which is awesome. I hope that continues with your son(c-diff going dormant that is)

      As for consulting with other UC’ers, you know, I’m not licensed to do things like that. Some sides of me wishes i chose the doctor route back when i was in school, but most definitely not the case. One recommendation that I am happy to give to everyone though (family and UC’ers) is to try and get active locally with other IBD’ers. Of course i don’t know where you live, but if your son has the opportunity to meet with others who are using differnet medications and most importantly “just living the life” of a UC’er, it will help ALOT, that’s almost a definite.

      I don’t know how much he does or does not want to talk/think about it, but there’s all kinds of video’s i’ve posted, you can find them at youtube.com/ihaveuc and that might give him some ideas into how I’m giving the beatdown to my UC.

      Best of luck Dana, and stay in touch,
      –Adam

      • DanaFebruary 25, 2012 at 3:34 pm #

        Thanks Adam for your response. We live in Denver, CO. He attended the CFA Camp Oasis last summer and is planning to go back again this summer. He was able to talk to a bunch of other teens about his UC, and got all sorts of feedback regarding treatments. Unfortunately haven’t connected with anyone his age who is doing the SCD diet. Although, his doctor actually recommended SCD as an option should this new drug change not work. We are working very hard to get him better without putting him on the immunosuppressants.

        • AdamFebruary 25, 2012 at 3:45 pm #

          Hey Dana,
          here’s an idea that I talk about within the newsletter and on a few places here, if you haven’t checked it out already, go and give a look to a pretty cool website called meetup.com

          Anyways, it allows for people to join “meetup” groups. I for example, am part of the SF Bay area group for IBD people. We had a very informal meetup at one of the members houses last week in SF for yoga/dinner, and it was all kinds of fun. I think most everyone out of the 7 of us was in the 20-early thirty range, but for SURE if there was a crazy teenager there, it would have been even better. maybe there’s a gorup like that out in the mile hand lands. heck, if your son gets up to Boulder, my sisters up there, she doesn’t have UC, but she knows quite a bit about it from me.. the meetup.com though might be agreat option for you guys.

        • LisaFebruary 6, 2013 at 3:04 pm #

          Hi Dana, My son just turned 19 in December. He was diagnosed with UC just this last summer. He is on the SCD diet and plans on sticking with it for at least 2 years. While it is not curing his UC (as I believe the diet claims to do), it definitely is helping him to manage it. He is in a flare up at the moment and awaiting his first iv treatment of remicade. His specialist wants to go to the next level of treatment as his last exam showed that my son’s colon had gotten worse. We were shocked that it had gotten worse as the symptoms were not as bad as when he was first diagnosed. I credit the diet to helping with managing the symptoms.

          • AngelaFebruary 7, 2013 at 2:49 pm #

            Hi Lisa,

            I’m sorry to hear about your son! I’m 24 and have been on Remicade for over 8 years. I just wanted to give some advice on the first treatment. I was lucky and it went very well and I still haven’t built up the antibodies too it (knock on wood). I would recommend talking to your doctor before his first treatment and discuss “pre-treatments”. Standard practice in most pediatric hospitals for remicade infusions is giving benadryl and either tylenol or an IV steriod about a half hour before the start of the remicade infusion. This minimizes the chance of a reaction or rejection. And I have done this pre treatment for each and every infusion even now at a adult gastro. I get IV Benadryl and IV Decadron before. And while Decadron is a steroid, its a very low dose and a one time deal so there are no side effects!

            Also make sure your son gets a TB screening before hand, gets a flu vaccine (every year) and pneumonia vaccine (every 2 years) as remicade makes your more susceptible to infections and the vaccines will lessen your risk.

            I know remicade doesn’t work for everyone, but it has for me. And I wanted to let you know that there are stories out there where remicade works since we only seem to hear about the ones that don’t :)And you can still do what you want! I went abroad for a year and just received my infusions in Europe while in undergrad! I also am an avid scuba diver. Just stay positive and the diet is also one of the best things you can do!

            Wishing him all the best on his first treatment!

            Angela

    • JenniferApril 8, 2012 at 1:15 pm #

      Hi Dana, Saw your post regarding your son having UC. My son turned 19 in January and started having severe problems. He was diagnosed with c.diff. After several rounds of Vanco, he still has c.diff. After colonoscopy, he was diagnosed with uc. He had a really bad weekend and we ended up in the ER. He started a new medication, Lialda, and it really made him sick, i.e. no energy, severe lower abdominal pains, lots of bloody diarrhea and nausea. He threw up blood and we headed to the ER. They think it was an allergic reaction. Still do not know for sure. He is on vicodin and sleeping alot today. Back to the doctor tomorrow. Have you tried this UC diet? My son has given up all soda. A lot of sugar as well. We have not given up gluten yet. Very difficult when they are so young.

  9. NicoleOctober 4, 2012 at 8:09 pm #

    I am on the tail end of my 3rd Remicade treatment when I had an allergic reaction. Face turned beat red, and a migraine that landed me in the ER. Seems my veins are toast due to the 3 treatments and now I can no longer take Remicade. I never felt as though Remicade helped, because since my 1st treatment I have some how contracted cdiff!! : ( I have been on 2 rounds of Flagyl and now Vancomiocine I have had cdiff since about July, it’s now October and still not gone! I am in a complete flair, miserable and having sever pain in my feet?? I teach Kindergarten 40 students to be exact, and I can’t even walk to the office. I am suppose to start Humira, hoping and praying that things get better…… anyone experience swelling in fingers and pain in feet? With a ton of recient blood work I have now been diagnosed from UC to indeterminant Colitis/chrones…. now I am not even quite sure what that means….uggg this stuff is wearing on me big time! Thanks for the shoulder…… : )

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