Week 5 of Humira

I'm on week 5 of Humira this week and figured I'd share my experiences so far. When starting Humira I had been on Imuran for nearly 6 months with no change at all in symptoms. Loose, occasionally bloody bms 8-10 times a day...mostly in morning. Was limiting food intake to try to limit problems at work.

First loading injections were pens and I did them two in each leg. The very first one didn't sting but the other three did kind of smart. Maybe it was adrenaline that eased the very first one. Didn't notice any issues that night. Next day was fine, too, until evening when I started to feel a little flu-y. I was tired on the third day and had a real thumper of a headache but after a few days these side effects faded. No change in symptoms at all.

Second loading injections were pens and I did them one in each leg. I had watched a YouTube video where an internist who gave himself the shots explained that there were far fewer nerve endings in the thighs than in the belly. It sounded reasonable to me. These two stung but the burning only lasted a few seconds. The injection sites were a little tender to the touch for a few days. Same symptoms as before with same timing except no headache really this time. After about the third day I noticed some improvement with symptoms...mostly a very calm sensation (or just a lack of any sensation) in the gut. Had a few solid bms but they were followed by some loose ones. After about a week this persisted. I would say I went from 3 on a scale from 1-10 with 1 being horrible and 10 being symptom-free to a 7. I started to feel a little more confident and began eating a little more. BMs were a little difficult. They seemed soft enough but almost like my gut was just too tired to efficiently push them through and this caused some discomfort. A few days before the next shot I starting taking a tiny bit of psyllium husk in the evenings (a level teaspoon). I looked forward to the next regular shot.

My next shot was a syringe instead of the pen. This is what doctor prescribed for some reason. I don't know that it was a conscious decision. The nurse probably just clicked the first button she saw when working on the script and it just happened to be syringe instead of pen. After reading a lot on the forum I figured I try out the syringe and see if it hurt a little less. I decided with the syringe to stick myself in the belly. I thought I was ready to go but sat down with a roll of fat between my fingers and just couldn't do it. I couldn't stick that needle in. I knew it wouldn't hurt THAT bad but for whatever reason every time I started to shove it in my brain said NO! After two and a half hours of pacing and picking different spots, and going through a dozen alcohol swabs prepping those spots I finally resigned myself and just shoved it in. Needle didn't hurt, pushed slow on syringe and when it started stinging a little I stopped for a few seconds and waited and then continued. It took a few minutes but it did hurt less and I noticed the injection site wasn't sore that night or next day.

This was Tuesday evening (It's Sunday now). I didn't have any of the headache symptoms...I can't tell on the flu symptoms. The psyllium had loosened things up a bit so I figured I'd add some probiotic to the mix and see what that did. I have some VSL#3 in the fridge and slowly eased that in with the fiber. Big mistake apparently. Colon did not react well at all and after 3 days of lots of mucous, some blood, and bad urgency I stopped. Still waiting on some of that irritation to fade.

I hope things will improve this week. My next shot is a week from Tuesday. I think I'm going to try the leg again this time. I can't say for sure but I wonder if the absorption rate is different between taking it in the belly where I have more fat or in the thigh where there is less. This last injection, which was my first regular injection, I took in the belly. With a new medication like this I'm probably hyper-aware of any new feelings so I was really looking for at least a little bit of flu symptoms and would have seen them as an indication that something was working. I *think* I may have noticed a little but it was 4-5 days after the shot this time instead of 2-3. So I wonder if a shot into all that subcutaneous fat in the belly doesn't take longer to get in the system. Probably not.

Anyway, thanks for reading. Hope this stuff works. I've been talking to wife and we're trying to hammer out what the common definition of "remission" is. 100% back to normal? Going to the john 5 times a day instead of 10? As far as I'm concerned if I can't eat what I want and poop once, maybe twice, a day then things aren't normal. I know everyone is a little different but I read about folks who say they're in remission but then say that they're gluten-free, sugar-free, caffeine-free, etc, etc, and I don't think that would represent remission for me. I'm willing to give medications a chance but am always ready to move on if they're not working. If the meds won't work then cut this evil thing out of me and let me get on with my life! :)

Thanks!
Brent

I'm n remicade, in remission with 1 bm a day. It took a full year to reach remission with remicade. I noticed big improvements in the first 6 weeks, then slow steady improvements thereafter.

Are you noticing an improvement yet with humira? If so, then stick with it and it should gradually get better.

Good write up, hope it goes well for you. I agree with your definition of remission being when the thing is GONE.

Edit: Well, not GONE. But gone. You know what I mean.

Ugh...Having an awful day today. I had mentioned that I was on Imuran and it wasn't working. My GI told me to discontinue the Imuran 30 days after starting the Humira. It's been about a week since I stopped the Imuran so I wonder if the troubles I'm having aren't related to that. I've been to the bathroom about a dozen times today with one of them requiring a wardrobe change.

That being said, I think I'll use a cortisone enema tonight as I'm scheduled to work in the morning and am not looking forward to that. I'm pondering whether I should break out my old leftovers of Asacol HD and try some of those for a week or so, as well. I've got a medicine cabinet full of failed medications.

I'm still gonna give the Humira a chance to work but my next appointment with my GI is next Tuesday...the same day as my next shot. I'm SO asking for a referral to a surgeon just so I can get an idea of what I might be in for. I think my wife is dreading the idea of surgery much more than I. I'm starting to miss my kid's soccer games and give up job opportunities, though. Enough of this nonsense. I'm 43 and married with a kid...gimme a bag to wear and I'll be fine!

iPoop,

I have a question for you. When you started your Remicade were you already taking 75mg of 6mp daily or were you on a higher dose using it as a primary medication against the UC? I know Imuran/6mp are derivatives of each other but can't remember whether 6mp is weight based like Imuran or not.

Before I switched to Humira, the Imuran was my primary medication at 125mg (5 a day). This was slightly high based on my weight but I wondered if when adding in a TNF med like Humira or Remicade and keeping Imuran rolling in the background if the dosage amount of the Imuran was generally cut back. My GI had me stop taking Imuran at 30 days into Humira and I think maybe the problems I'm having now might be from that. Perhaps it was helping a little...not enough to really notice.

I'm still having a tough time with just Humira so I added back in 3 Asacol HD a day plus hydrocortisol enemas and suppositories in the evening. I hate steroids. Even such a small amount makes me a little crazy. I'm miserable. These additions have helped me function slightly better through the day.

Anyway, I'm thinking of adding back in the Imuran, but I'm wondering if it needs to be a reduced dose when taken in tandem with a TNF so my liver doesn't go on strike. I meet with my GI Tuesday so I'll certainly clear it with him but I'm trying to go in with a plan, too.

I often wonder if my GI finds it annoying that I'm so proactive in my own treatment. It's just when I'm miserable and have some puzzle pieces lying around that might help I'm going to try to stick some together to see if it helps.

Thanks, iPoop.

Hi Brent, I tried humira and imuran and remicade and and and.. You get my point. I'm on entyvio now, which is gut targeted, with little side effects. Humira , omg, it was bad for me. Flu like symptoms, couldn't breath well a no I couldn't do anything. I didn't take a shower for a week cuz I couldn't get out of bed.mwith all that being said, maybe entyvio will work if humira doesn't . Me, personally, I want to be far away from surgery if I can. I went to mayo clinic a mo th or so ago and the head gi doc said Entyvio is very promising and even with surgery you can still have uc or get in infection in the other part of your intestines. Maybe it would be chrohns then, I don't know. Don t throw in the towel if you don't want to , there s medication out there to try, one might do the trick. Either way, I hope you feel better soon

I've never tried ldn, and it's beyond my area of expertise. The resources thread at the top of this forum has a ldn testimonial from someone it worked great for. Maybe others have thoughts on ldn?