Friday, August 25, 2017

RedHill RHB 104 Anti-MAP Treatment for Crohn's A Breakthrough?



Recently I saw an article in Gastroenterology & Endoscopy News discussing how an old theory that believes Crohn's patients actually suffer from an infection called MAP (short for mycobacterium avium subspecies paratuberculosis). MAP causes a Crohn's like disease (known as Johne's disease) in cattle that reeks havoc on the small intestine and can even kill cattle. It has been shown that the cobblestones in Crohn's patients are similar to the ones found in cattle who suffer from Johne's disease.

The story discusses a woman (Julie Doyle) who suffered from Crohn's disease for 25 years. Julie had 4 surgeries and tried Humira, Remicade, and nearly every other possible therapy. Her existing doctor said she really didn't have any other options.  One option was to try an anti-MAP treatment.  

The anti-MAP treatment for Julie was taking 600 mg of rifampin (Rifadin), 1,000 mg of clarithromycin (Biaxin), and 500 mg of levofloxain (Levaquin). The levaquin was dropped (due to joint pain) and switched out for low dose naltrexone (which has been shown to benefit Crohn's patients too). What is amazing is 6 weeks after starting the therapy Julie began to feel better and added 10 pounds. After 12 months of taking this prescription Julie had a colonoscopy which showed her Crohn's was in remission. The results show that since the beginning of starting in 2014 Julie was in remission with "complete mucosal healing". Her doctor William Chamberlin came up with the need to try the anti-MAP therapy. Dr. Chamberlin practices gastroenterology practices in San Antonio, Texas and currently has a one year waiting list for patients to see him. Dr. Chamberlin has been using the triple antibiotic therapy since 1994 and has seen success with it. He also claims a 85% remission rate for patients that use a 4 antibiotics (anti-MAP therapy)  

What is interesting is that the anti-MAP therapy has shown a 67% remission rate in 244 Crohn's patients. RedHill Biopharma is currently in Phase III trials with the anti-map drug. The study is suppose to wrap up in September 2017 with actual results published in April 2018. This trial has an estimated enrollment of over 400 patients and will look at patients over a 4 year period. Redhill has even developed a MAP test for patients to test their levels of MAP in the blood.

My own view is I believe the anti-MAP therapy can help certain individuals with Crohn's. I don't think it will be a "cure". However, I do believe for some patients it will be beneficial given the evidence from what I have seen over the years. Although, one concern I would have is by taking multiple antibiotics I would worry about c difficile which I contracted by taking an antibiotic. Of course this can be avoided by taking probotics and I would be curious to know if taking probotics would reduce the effectiveness of the anti-MAP therapy. We will get some good information once we get the results of the from the Redhill trial due out next April. 

Saturday, July 15, 2017

Possible Acid Reflux and Friday Afternoon Flare

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So this past week as been a tad interesting in terms of how I felt. I attended a seminar in a hotel for work which was interesting and learned a tad about management, delegating, and that type of stuff. Anyways, during the seminar noticed some tightness near my throat (it wasn't a cold or anything). It seems to have been coming and going. I do bleach more than I am use to and have felt minor regurgitation in my mouth as well. I tried calling my regular internist doctor for an appointment and left a message on their machine but they have not called me back yet (which is unusual). I plan to let it pass unless my symptoms get worse. My usual test for going to the doctor is "is this condition bothering you?".

So yesterday (Friday) I seem to have a dull pain that wouldn't go away. I really didn't feel much in the morning but by the late afternoon it was noticeable and by the evening it was pretty painful. I honestly don't remember feeling that much pain in quite some time. The pain was more of a dull cement feeling in my stomach (somewhat like you have something to get out). I tried putting an ice pack on it which helped somewhat. I stayed up pretty late (until 3 A.M.) thinking I would have a bowel movement so it would improvement the pain level. I didn't have any bowel movements last night but had one this morning (solid as a rock) and felt a little better. Right now as I type this I have the urge to have another bowel movement as well. I have seen this movie before. Typically I have a cement dull pain in my stomach and feel tired and then a few days later I am back to normal. I plan to work out in another hour or so. We shall see how that goes.

Tuesday, July 4, 2017

5 Year Humira Anniversary Still in Remission

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Well I have more than passed the 5 year mark for taking Humira for my Crohn's disease. My first injection was back in June 6, 2012 which honestly at the time I thought Humira would help somewhat with the stabbing pain I was feeling in my stomach. After taking 4 original doses for the starter pack I noticed a noticeable difference within the first couple of weeks. Back in May 2012 I was feeling awful and had this shooting pain in my stomach. I remember helping my parents move to a new home and just moving simple things felt like a struggle. It got worse when I would be up late at night throwing up and thinking how is this happening. My GI then put me on Humira after using prednisone as a backstop. I started blogging about my experience with Humira after 3 months on it here.  When I got c difficle back in 2013 which I believed caused a flare up my GI increased my dosage from every other week to once a week temporary and I was back on track. Back in June 2014 I blogged about my 2 year anniversary on Humira. My most recent post on Humira was why I don't rotate my shots.

In 5 years I never missed a Humira shot either (this coming from a guy who only missed 1 day of school from kindergarten to senior year of high school). Generally I take my shot on Saturday evening. I have a couple of times taken it on Sunday or at the latest Monday. There were times I did have some leakage in the shot which is frustrating but honestly I couldn't tell any drastic differences in my health for that. My advice would be make sure you take your Humira shot! Yes we are human and forget things but you if you have to add a reminder to not only take take your shot but also reorder it. Up until age 26 I was on my parent's health insurance plan because it offered great coverage and my employer didn't have a plan. A few years ago the company I worked for added a health insurance plan. The old plan I use to have made it less of a pain in ordering Humira (they would give you 4  shots of Humira. My current orders only allow me 2 shots at a time (which means I have to call every couple of weeks).

If someone had told me 5 years ago that I could take a drug that would leave me with little to no stomach pain I would have thought they were crazy. I am glad my GI identified taking this drug early on in my Crohn's diagnosis. I have been to CCFA meetings where patients try all different types of things (Prednisone, Remicade, and others) and nothing seems to work. I feel truly lucky and amazed at how well Humira has worked for me. I know in the future my health may have ups and downs but I believe more progress will be made in future regarding the treatment of Crohn's disease. 

Saturday, June 3, 2017

Why I Don't Rotate My Humira Shot


I have been taking Humira for roughly 5 years (I started back in June 2012) and Humira has been a miracle drug in terms of keeping me in remission for Crohn's. Actually I can still remember when a nurse came to the house to show how me how to use the drug. Also I remember Humira came in two different types (you could get the syringe pen). Luckily I was prescribed the pen. Usually the Humira pen seemed quite simple. When the nurse was demonstrating how to use it she mentioned that I should rotate where I inject it. Usually the typical places to inject Humira are on either the left or right thigh of abdomen area. However, I had issues whenever it came to injecting the abdomen (given when I initially started Humira I had lost a bunch of weight and didn't have much fat on me). What I found is when I tried to inject the abdomen there would be some leakage which would be less medicine getting into my body to fight by Crohn's. At first I was disappointed but even sometimes when I thought I got a good shot there would still be a little leakage. Injecting the thighs has always been much easier. When I stop injecting my abdomen I was worried that all the sudden I would flare (however this didn't happen). I have been injecting my thighs only for over a year and honestly haven't seen any change in my Crohn's. 

My routine for taking Humira is pretty simple. I take the Humira out of the refrigerator and put a timer on for roughly 20 minutes to let the Humira sit. Also I make sure I have an alcohol pad (Humira includes some in the Humira). Once the timer goes off I check the Humira to make sure it is clear. Then I rub the alcohol pad on my thigh and wait about 30 seconds. I then take the two caps off the Humira pen and then make sure I have a song I really enjoy playing right before I inject (honestly I have never had a leak when I play music while injecting Humira). 

I don't know if there have been any studies done of people who don't rotate their injection but my guess is it wouldn't really change a whole lot. To me I would rather get 100% of medicine rather than injecting into a place were I may only get 80%. 

Sunday, April 9, 2017

Weekend Cramping Almost Gone



I wrote in my last post that on Friday I was feeling all out of sorts (cramping and really pretty tired). Well this weekend I took it easy and honestly didn't do much on Saturday (the most I did was watch Netflix/Hulu which offers so many hours of entertainment!) In terms of food I really didn't anything heavy either (last night for dinner I had some light pasta). When I think of eating with Crohn's I think of my stomach as a brown bag and anything I eat going into that brown bag. The question I ask myself is "if I eat this will there be grease at the bottom of the brown bag?". In my example something greasy like enchiladas, burgers, or brownie sundaes would most likely leave grease while noodles, salads, and sandwiches won't leave any grease in my example.

Also I got some pretty good sleep this weekend as well. I have been sleeping 8-9 hours which is good and I feel as if I have more energy. Right now as I type this I don't have any cramping or pain. Hopefully this will continue as I am not due to take my Humira shot until next weekend.

Friday, April 7, 2017

Friday Afternoon Cramping


This morning I woke up with some pain in my stomach, It was a dull stabbing pain/mix with a bloated type of feeling. All this took place around 5 A.M. Today I had a meeting scheduled with a client as well and didn't want to miss it so I told myself I would try to sleep it off and get some more rest before I woke up. Well this didn't exactly happen as I was kept up by the blunt pain and just went on my computer for a little bit before heading back to bed. I called my internist and his wife answered the phone and said he was in the shower but he called me back and told me I could see him that day if things got worse. The pain was still there and I got into the shower and made the decision to go to work. Throughout today I was feeling pretty tired and had pain near my belly button it seemed like.

Honestly this episode was similar to the pain I had last Thanksgiving that I blogged about here. I don't have any other symptoms like diarrhea or anything else. In an odd way the pain feels like IBS. Before I had Crohn's my GI thought I had IBS and I took some anti spasm medication that relieved it. The best thing for me to do is just rest. The last time this happened I just slept and felt better.

Friday, March 31, 2017

Board Exam, Cramps, Stress and Life


Well the past couple of weeks have been interesting. I took my board exam on Sunday March 18, 2017 and it was 7 hours total (two 3 hour exams) and passed which was quite a relief. I took some time off work to study for the exam. Honestly, I never remember studying so hard for an exam (even in graduate school). Every day I was studying 5-6 hours a day. I felt like towards the end I was a little stressed out but honestly the night before the exam I slept pretty well (probably because I was so tired). On my part I scheduled the exam in the afternoon to maximize my sleep time (I can be quite a night owl and prefer waking up later if possible). After I took the exam I had some cramps. However, these had waxed and waned. Today I feel pretty great (I am on vacation and my mind feels quite clear not having to work).

Cramping seems to come and go. The most important thing I look for my bowel movements. These continue to be normal and nothing unusual. My only wish was that there was less cramping. I plan to solve this with some good sleep this weekend.

Now that I passed my board exam I have much more free time to engage in activities I didn't have time for before. I plan to get more involved in my Crohn's organization and also will try to write more blog posts. Honestly, as I probably have stated before the improvements and advancements happened so quickly that I haven't had time to keep up with them as much as I would like. This of course is a great thing though.

Saturday, March 11, 2017

Mini-Flare, Tired, Ice Pack Burn, Studying, and Stress



So I honestly have not written on the blog for quite some time. Work has been pretty busy and honestly my Crohn's has been very good (no complaints). I honestly haven't had any issues. Today however was a different story. The day started out pretty good and I even worked out for almost an hour. However, tonight after dinner when I was watching T.V. with the family I had to make some runs to the bathroom. At first the bowel movements were solid and then by the 3rd time I had to go to the bathroom they started to become looser. Now honestly this does happen on occasion so it isn't too surprising. Typically if it does occur it is on a Thursday night or Saturday night on the week before I take my Humira (I take Humira on Saturdays). Anyways, I went to the store to pick up some things I was feeling pretty tired and got some fluids to re hydrate. I also had to get some bandages as well (more on this in a bit). As I write this now by body has come back to normal and really no pain.

Stress has been a factor in my life recently. I am due to take a board exam not this Sunday but the following Sunday. Honestly, I have been preparing for this exam for a couple of years (I feel like the pressure is on). I have been studying roughly 6 hours or so a day. Of course this can ware after a while. I went to a review course the week before last and that was 8 hours per day sitting in a chair learning material. So this stress as been on me as well. The exam I take is 7 hours total. I get a 40 minute break but hope I don't have to use any of it on bathroom time. The thing I worry more about is my energy level. Staying concentrated for 6 hours for anyone is not easy.  My game plan this week is to get plenty of rest and still maintain a reasonable study schedule before I take the exam. I hope I do pass so I don't have to worry about ever taking this exam again.

As I mentioned before I had to pick up some bandages at the store. Last night I had some cramping at about midnight or so decided to stick a cold compress on my stomach. Now the problem was I put it directly to the skin which is a big no no. I woke up today and took a shower and after I showered realized it was there. I researched how to get rid of it and the advice was to warm up the skin and there might possibly be some blistering and burns (in addition to the bandages I got antibacterial ointment as well). I plan to "heat" up  my skin again to see if it goes away. The skin area around my skin looks a tad better.

Overall, I am a little tired and had a mini flare. History with me as shown this is usually temporary and disappears within 28-48 hours. I plan to gets lot of sleep this week as well to prepare for my exam. Speaking of sleep and time it is also time to set the clock ahead an hour for daylight savings time. If things changes I will post an updated post.