Friday, November 16, 2012

Xelijanz (Tofacitinib) for Crohn's?

In this FDA press release a drug called Xelijanz (tofacitinib) was approved for rheumatoid arthritis (autoimmune disease like Crohns). This trial showed that patients improved when taking the drug twice a day (at 3 mg) over a 6 month period. Here is a great article that includes tofacitinib along with other possible upcoming treatments for Crohns. Pfizer (the drug company who made this drug) has every incentive to test this drug for other autoimmune diseases. What I have noticed is that one drug can treat many different things (Remicade and Humira treat multiple autoimmune diseases).

One a drug is approved by the FDA it can be used for what is known as “off-label” use. The FDA can’t regulate the practice of medicine so in theory a doctor could prescribe tofacitinib for Crohns however he may have to have the patient consent to some things before hand. Crohns patients who are chronically ill need all the help they can get. We want as many possible tools as possible to fight something that is awful, painful, and makes us worry all the time. Allowing the FDA to get out of the way an let informed patients and doctors experiment could work wonders.

Wednesday, November 7, 2012

Humira 5 Months Still Working!

It has been a while since I have blogged about my progress with Crohn’s. I started Humira June 6tth, 2012 and 5 months later feeling pretty darn good. Pretty much been eating whatever still taking Asacol three time per day, Humira, and my doctor recently noticed I was vitamin D deficient (even after taking a prescription for a supplement) and upped the dosage. I had a scare Monday when I had what I would call a one day flare where after I worked out around 5 pm I really had to go to the bathroom. My bowel movement continued for a while and then stopped and I felt much better after it. The only other real development was my top gum line seem inflamed from what my periodontist says is a systemic issue and sent a sample of my gum tissue to a pathologist who will look to see what it is. My gums have been inflamed (even before Crohn’s). However it is odd that my upper gums are inflamed however my lower gums are perfectly healthy.  Today the periodontist did a deep cleaning which actually made my teeth look really nice! He also trimmed my gums which makes me have less of a gummy smile. I have had this done before and it does look very nice once done.

I honestly have still not had any pain on Humira. Being the planner that I am still looking at alternatives once Humira stops working. I guess the first step is to go to 1 injection per week (instead of one every other week), then if that doesn’t work go to Cizmia, then if that doesn’t work Remicade, then if that doesn’t work then possibly low dose naltrexone if my GI approves it. Last resort should always be surgery. 

Thursday, November 1, 2012

Cure For Crohn's: Eating Bark Help Crohn's?

I recently came across this story which talks about a woman named Marlene Barnes who is a 72 year old woman who has Crohn’s disease and has had it for 48 years. She got it when she was only 14 and had to get part of her colon removed.

This story gets interesting as Barnes cutting bark off trees, letting it dry, and grounding it up in her home.  I have a few issues with this story. First, her doctor claims she has “no evidence of the active disease”. This could just simply mean that her Crohn’s is in remission and is not active. What I would want a GI to do is to examine her colonoscopy compared to someone who doesn’t have Crohn’s and see how different they are. Second, this is only one person who has one body that is different from everybody else. I would want to see some large scale trials done to see the safety of this and whether or not it is effective. I do hope tree bark does help those with Crohn’s however until the data arrives I will be otherwise unconvinced.

This leads me to a larger point of people believing everything they here. As the commercial says “Where did you hear that? The Internet”. We can’t believe everything we see, hear, until there is some hard evidence to back it up and more than one trial to prove it was not just a fluke or luck. I hope the CCFA will look into this and possibly look at doing trails. Marlene Barnes could be sitting on a gold mine if this really works. I know I would be barking away if it was shown to be both effective and safe!