10 Year Anniversary of Humira for Crohn's and Still in Remission!

Time really does fly by! This month marks 10 years since I first started taking Humira (my first shot was June 6, 2012). I posted about the experience here, a 3 month post here, a 6 months post here, a 1 year anniversary post here, a 2 year anniversary here, a 5 year anniversary here, a review of Humira literature here . 

In the summer of 2012 (around May 2012) I can remember crashing pretty bad with a major flare up with Crohn's. I can still remember waking up in the middle of night (at 2 A.M.) with blunt sharp pain in my stomach, throwing up, and couldn't get out of bed. These days I live a very normal life without any gut pain and rarely have a loose bowel movement. 

At first I can remember being anxious and nervous about having to inject something into my body for the rest of my life/the possible pain of injecting medication. If I recall correctly the drug started working within days of me taking it. I recall going on YouTube and looking up videos of other people who had taken Humira and remember this one guy saying that he really wasn't in pain and could finally eat potato chips again without having to worry about pain (I didn't think this would happen to me). The only time my dosage changed for Humira was after I had a flare up of Crohn's (post c difficile and fecal transplant). Other than that though I have stayed at 40 mg injection every other week.  

One improvement I have seen within the past few year is the Humira citrus-free version. This new version seems to have resulted in less pain when injecting. Typically I leave my Humira out for 15-20 minutes. In this post I mentioned why I don't rotate my Humira shot (per instructions). 

In conclusion Humira has been a miracle drug for me and has worked quite well! Hindsight is always 20/20 and I was initially diagnosed with Crohn's in December 2011 (but I probably had Crohn's beginning in October 2020) I wished I had started Humira earlier! At the time I was in graduate school and my family and doctor agreed to stay on Prednisone and Asacol to get me through. Humira has forever changed my life for the better.  

FDA Finally Approves Skyrizi for Crohn's Disease

Yesterday the FDA approved Skyrizi for Crohn's disease. As someone who actually lives with Crohn's (but currently in remission) I am always grateful that there are continually more FDA approvals coming for Crohn's disease given how many people/families have to deal with it. 

The FDA has three phases of drug development. The first phase generally looks at whether a drug is safe or not. The second phase looks at safety and if the drug is effective. The last phase looks at how effective the drug is. The two major phase three trials done were the ADVANCE and MOTIVATE studies. Between the two studies over 1400 patients were looked at. The type of patients in the study were patients that were not in great shape with their Crohn's. For example one measure they look at in these studies is the Crohn's Daily Activity Index (CDAI). This is one metric for how well a Crohn's patient is doing not only with their GI issues but also their well-being. For example my score is under 100. The scores can range from 0-600. Patients in the studies for Skyrizi had a CDAI between 220-450. So for example these patients would have had more than 4 soft bowel movements per day. In the ADVANCE study the researchers looked at those who actually failed a previous biologic before taking Skyrizi. This is important since many people with Crohn's will start on one biologic and then have to continually try new biologics until they find that works. 

In results from the ADVANCE trial show that 45% of patients taking the 600 mg treatment were in remission (compared to just 24.6% in the placebo group) after 4 months. What is interesting though is that in the MOTIVATE trial (were patients had not failed a biologic the remission rate was lower at only 42%). 

This result is quite remarkable is quite comparable to other biologics out on the market. According to inflammatory bowel expert from Dr. David Rubin at The University of Chicago patients that start the drug "feel better within a few weeks" as the "drug works fast". 

What is interesting though is that for Crohn's 600 mg is required (and has to be given through an IV infusion for the first dose followed by 360 mg every 2 months afterwards. It is interesting to note that Skyrizki was also approved for psoriasis back in 2019. Usually drugs that are approved for psoriasis have some chance of getting approved for Crohn's given that both diseases are autoimmune diseases. 

Skyrizi falls under a class of drug of IL-23 inhibitors. The inhibitor is just trying to tamp down the immune from overreacting. Currently there are three IL-23 inhibitors currently that have potential for Crohn's. The first being Skyrizi (which was just approved). Another IL-23 inhibitor is Tremfya which had good results in Phase 2 trials. The last IL-23 inhibitor is mirikizumab (which is made by Eli Lilly-as far I can see I don't see a street name for the drug yet). However mirikizumab has shown good results recently and almost half of patients in a clinical trial were in remission for ulcerative colitis (after taking the drug for one year). One recent paper suggests that IL-23 inhibitors may be superior to anti-TNF treatments like 

Personally I am pretty amazed at how many drugs have come on to the market for Crohn's since I was originally diagnosed back in 2011. Although having Crohn's can be awful and not fun it really is a golden time in terms of drug development. If you think about a drug potentially putting 40%-50% of patients into remission ends up being many hundreds of thousands of people feeling better. Also patients in remission allows gastroenterologist more time to work with other patients. 

Minor Flare Up, Right Shoulder, and Upcoming Trip

Overall my health has been pretty good the past couple of months. This past week I have felt a little on the tired side even though I have been getting the right amount of sleep. It was strange since I went to the doctor this past Thursday (more on this later) and went for an x-ray and after the x-ray I noticed a minor flare up on Thursday and Friday. During the flare up I actually gained weight to balloon up to 171 pounds (currently back down to 168 pounds). Lately I have had some cramping and just taking it easy with light sandwiches and soups to not have anything too greasy or salty.

I went to my internist on Thursday after I had some minor right shoulder pain for about a month or so. Gradually over time it has seemed to improve. Honestly I don't know how it happened but I think since I use a weighted blanket at night (which can be quite heavy) I may have used my right hand/arm to pull the weight up and somehow strained it. Currently, I just have pain when I move my arm side to side (like putting on a seat-belt or moving my right arm side to side). The pain is very very minor and most of the time I don't notice it as it doesn't radiate. My doctor had prescribed physical therapy, some cream, and to take 500 mg of Tylenol for a couple of days. I haven't taken any Tylenol since I am concerned that taking it may flare up my Crohn's. My physical therapy appointment has already been scheduled for after I get back on vacation. 

Next week should be exciting as I plan on taking a vacation (I haven't been on one in a while!) to London to see my twin sister, my new nephew, and brother in law. The trip will be a little over a week but should be relaxing and we will get to see my nephew get baptized. I took my Humira last week but since I will be gone a while I plan to take it tomorrow night. 

Although, I have had some minor set backs recently, all in all I feel pretty well. Last night I went to bed around 10 P.M. and was pretty tired and got some amazing sleep. Amazingly my flare pain seems to be nil today!  

Cramping Appears To Have Resolved!

My cramping has seem to have dissipated today (Saturday). Thursday was probably the worst in terms of feeling an overall blunt cramping near my lower abdomen. Also late Thursday night I kept having to go to the bathroom around 11 P.M. and midnight. My bowel movements were normal but I could feel what I call the "alien" or massive pain/cramping until I completed my bowel movements. It was interesting because the cramping was always in the exact same area. I know sometimes the cramping or pain can move around but this 

In terms of what I have been doing to help out the pain, I have been making sure I get ample sleep. So last night my Oura ring tracked 8 hours of sleep. You have to remember it does take me a little while to get to sleep so when I get 8 hours I feel pretty good. The previous night before that I only got 7 hours of sleep which made me feel sluggish and tired and also seems to have an impact on my gut health. The other change I have made is I have been trying to eat light (nothing greasy or too heavy). Lastly, I have been making sure I have been taking hot baths to help relieve the pain. 

I feel great compared to where I was a couple of weeks ago when I both have constipation and cramping and the constipation seems to have gone away and the cramping has been greatly minimized. Even though things are going well I will try to keep at it with ample sleep, eating light, taking hot baths, and increasing my fiber a little bit. 

Cramping Past Few Weeks Part II

 

As a follow up from my last post I still have had cramping for the past week or so. Compared to my post though I am sleeping pretty regularly (roughly 8 hours of sleep per night) and the cramping has gradually appeared to have gotten better. 

I asked my GI given the constipation if I should do anything different. He told me to keep taking hot baths and make sure I eat fruits and vegetables. In addition to my GI I also work with a nutritionist who had told me to add more fiber to help the constipation. In addition to this drinking more water as well would help. 

The other thing I changed as well was I took my Humira (4 days before I was suppose to). The other thing I did as well was normally I just inject my right thigh but this time I directly injected Humira into the fat of my stomach to maybe get it closer to the source. 

My weight has also shot up as well. Currently I weigh around 170 lbs. and I normally weigh 165-168 lbs. It is an odd experience since I haven't known I was hungry due to the cramping in my stomach. The odd thing as well is usually when you have cramping with Crohn's you are losing weight. For instance around lunch time I am usually starving and earlier in the week I didn't feel an empty sensation which seems to trick my brain and causes me to eat more than I should. The past few days things have seemed to fall back in line and I fell almost back to normal. 

My game plan the next few days to take some vacation to rest and relax. I think this would a good test to see how I feel (without any stress) and also to examine my sleep as well. Also I plan to stick to eating apples, drinking plenty of water, and also trying more of a high fiber cereal. 

Cramping Past Week

As usual I don't blog too often here since my overall health has been generally good and I have been in remission with Crohn's for almost a decade (thanks to Humira). This past week (starting probably Sunday night) I felt cramping in my stomach. To be more accurate it was more of a blunt pain in my lower abdomen and not any type of sharp pain. The pain was right below my belly button but above the groin area. The pain lingered on and I tried to do my usual routine of: eating lighter (okay and sometimes not so light)/hot baths/cold packs on my stomach which seemed to help some. Monday and Tuesday night I slept more than I have slept in a long time. Also what was strange was I was going to bed extremely early (around 8 or 9 P.M. which is a couple hours before I go to bed). For example on Sunday night I slept for 8 and half hours. My average sleep time has been a little under 8 hours. On Monday night I slept roughly 9.25 hours (I was in bed for almost 10 hours) and felt so exhausted but really didn't know why given I didn't have a stressful work schedule nor was there any other activity or anything else that was stressful. 

The other somewhat bizarre thing is when I ate food my cramping actually tended to subside (maybe all along I just had hunger pains). Also I have noticed that my bowel movements have been a little harder to achieve since I seem to be a little more constipated but my movements are manageable and don't hurt. Also I haven't seen any blood or any usual looking stools exiting my body. 

Today (Friday) I have very minor cramping and just about to 100% which is great. This week was somewhat of a bummer being tired, cramped, and wanting to go to bed early. The game plan is I am due to take my Humira this weekend and that usually helps (it takes a few days) but should do the trick.