Humira and me...

Hi All--

Some might remember me, though I'm sure there are many more new faces on here. As a refresher - I was diagnosed in Dec 04, whilst in the USAF. I was separated in Feb 06 because of it. I moved with my wife to Colorado where we tried to start our new life but found it difficult. My health floundered while my awesome wife managed to find a good job in Denver, a long way away from our home. Finally my health turned around a bit and I was able to get a degree and my pilot ratings. A month after getting my multi-engine, instrument rated commercial license (yeah me!), my UC came back like I've never seen it. That was October 08.

Regarding my walk with UC-- flared in Oct 04, officially diagnosed in Dec 04. Went through ALL of the aspirin-based drugs, as well as steroids, enemas, and strict diet adherence. None worked except the enemas, which, lets face it are the BEST things in the world. So dignified and not at all painful (slop on the sarcasm here). Ironically, my UC calmed down quite a bit at the time of my separation from the USAF. During this time I was put on 6MP - which ranked right up there with the enemas, as far as I'm concerned. At least with the enemas, I didn't go through (unlike the 6MP) high, sudden fevers, constant nausea, headaches that would kill a horse and this one weekend where I couldn't keep anything down, but afterward I had rippin' abs! My liver function spiked and my new Colorado doc took me off cold turkey. Went through another c-scope and was told, yup, still have UC. Continued on a variety of useless drugs through 06 and into 07. Had another scope in May of 07 and then went through a medical eval board with the AF and both docs agreed-- yup-- still have UC but now proctitis, too! Around Oct 07 (hmm... Oct seems to be my month), I began a nearly year-long bit of peace with only occasional run-ins with stomach pain and bleeding. I have been in a awful flare recently and I've finally told my doctors I won't do it any more. No amount of Lialda or Mesalimine will help me (throw pills at doctors here and storm out). I finally agreed that I would have yet another c-sope, just this once, before my current doctor would agree to move onto Humira.

My UC has been characterized as terrible cramping pain in my lower left abdomen. The UC has only haunted a small part of my descending, terminal area of my colon, until recently. It obviously progressed to proctitis, too. I figured as much because this flare is/has been very difficult and extra painful. I discussed even removing the affected parts of my colon but I'm told they won't opt for this because the area that remains will take up the ulcers Pain has been my biggest symptom, but this time around the bleeding has been a lot more involved. For someone living at such a high altitude, I need all the blood I can get.

So now that leads me to here-- tapping out this message while a ton of Humira doses chill in the fridge. My doctor gave me no instruction on how to take it but I believe a Humira rep will be contacting me shortly.

So I want all the feedback I can get on what to expect with this Humira. Of the people i have heard of who use it, say that it has worked very well for them. But knowing how UC is, I thought I'd better go straight to the horse...thats you guys So please please, give me all you got-- good and bad and things to watch for.

Thanks all...

Ryan out

Pens are easy to use. I never talked to anyone, just watched the dvd in the starter kit. Humira has helped me, most with my arthritis symptoms. I have to go back for a one year follow up scope, post Humira to see how it has impacted my colon.

Hope it works great for you. Only downsides I have experienced with it have been slight weight gain (10lbs) and achy joints.

I had a starter kit. I went to my GI clinic and had a nurse work with me on my first 4 injections. I did start with 4 pens, then went to 2. My doctor kept me on the 2 pens due to how flared I was when I was first on the medicine. I just recently switched to 1 pen and no problem for me. Thankfully.

Go to www.humira.com and they have a video on that site on how to use the pens. That should really help you out.

Ryan, did you figure out the injections? How did the first injections go? Did u start them last night? When is your first dose?

For me it took about 2 months, I also went on Imuran at the same time though. When I first started taking the Humira, it took me about 10 minutes, then the more I used it the easier it was. Now it takes me 1 minute to give myself the injection. It's scary with the first dose cuz of the initial reaction to the immediate "punch" with the pen. At least that was what it was for me. My hubby considers me a "druggy" when it comes shot time. For me when I take my shot, I take it at night time so the soreness will be gone by morning. I hurt for a while then it gets tender, then it's gone by the end of the weekend. Saturdays are best for me. Just a suggestion for the future though. Everyone is different with the reactions.

Glad to hear you got the help you needed.

I was soooo scared when I first went on them, but my husband is a BIG woss, so I have to do it myself. I'm kinda thankful I do it myself cuz I know the sensitive spots, and how easy it's become for me. I used to shake when I was giving me the dose, now it a snap for me. Maybe u (kelina) need to just dive in and do it yourself for once, maybe it will help you learn that it's not so bad. Has the Humira put you into Remission yet?

Sweetie and Kelina--

I didn't realize I would be more sensitive in one area versus the others. My lower abdomen is where I felt the needle and even the fluid going into me! I was a little grossed out but then thought it was cool (I'm weird like that). I've been working out like crazy lately (when the UC lets me-- some days are just too much) and I've managed not to get all chubby during the holidays. So it is hard to get a good grab on the skin to provide a good injection site. But the skin higher up on the stomach didn't hurt at all.... I guess a little fat is good for that.

I can't wait to be able to run again. With this flare of UC, the only running I do it to the bathroom.

Hi all--

So it has been several days since I've taken my first injection of humira. I know it is unlikely for any major changes in my condition but I wanted to tell the forum about my experience so far.

The injection sites of my first dose are completely gone-- no signs of irritation or any complications. The small blood bump under the skin of one injection is gone.

Now-- as for my symptoms-- let it be known that this ulcer of mine has its good days and its bad days. I would not pay much attention to any apparent improvement except that for many, many weeks now, I've had NO good days. The first thing I noticed is the decrease in blood. Although it still happens, it is not nearly the same amount. The pain remains-- which has always been my biggest complaint. I also have plenty of gas (sorry, but true) and the discharge (mucus? I dunno-- it is watery but could pass as mucus and happens a lot even when I have no bowel movement) is about the same.

I've had no increase or decrease in my appetite, dietary habits-- nor have I had any issues with sleep or apparent weight gain. I also don't have anything like joint pain etc that some people report but I have no previous joint issues.

In all, I feel no different than I did before in terms of feeling "bad" but can report that the past two days, at least, have been better than I have had in a long time. This could very well be a psychological reaction-- just knowing I'm using something that has had success for so many has given me hope-- a very powerful drug in of itself. But I have no reason to doubt that humira could be working. It has been my experience with past medications that I'll see whether or not it is helping within days of taking the treatment-- or if not (like so many!), I know the drugs are not working and to move on. I don't expect the response to be immediate with Humira-- but so far, things are going well

Ryan

Carol, is the Remicade starting to lose it's effect on you? Or are you just wanting to move to Humira for other reasons?

Okay so I'm just gonna butt in here, but I'm getting pretty desperate for an answer.

I started humira a bit before thanksgiving and I'm still having blood, cramps, urgency, accidents, etc. Still, I have slightly better and worse days.

I guess what I want to know is when do I move on? I have already seen a colorectal surgeon and he thinks I should go for a j-pouch surgery but I thought I'd ask some humira people first. Am I just not being patient enough? I just don't feel like I'm seeing results like everyone else and I'm tired of wasting my life just waiting for different treatments to work.

hiya i figured i would post about my humira since yall was asking. i think i been on humira since oct 08 if i rem right. i also take sulfasalazine. the humira works i dont have much problems but i still get alot of cramping and pain. nowhere as much as i did when i was last in the hospital. i wouldnt say im in total 100% remission but as long as im careful with what i eat, sugar is bad for me whenever i eat something with alot of sugar the frequency of bathroom visits are increased alot. i try to not eat out and eat lots of vegetables and i do well. for me i was told that to start keepiong a food journal and to use that as reference so i do and it works. i very rarely have blood any more as well. the humira took  me about a mnth to start to work. im not sure it might be the combination sulfasalazine and humira. i didnt notice an immediate result, more like i eventually started to feel better. i started humira with 4 shots in the hospital and weaned down to 1 every other week. any other questions about humira ill try to answer good luck.

Thanks for the input Heathd. I'm so glad you're experiencing increasingly better conditions.

I'm still on my first week of having taken the first four pens of humira. Something I can say has changed-- in a big way-- is that my bowels are much more formed-- however, I don't think my colon is quite ready for it -- this situation equals a lot of pain when going to the bathroom! I still have blood but that too has decreased. This very well could be a change in my day-to-day symptoms as my UC never stays the same one day to the next or I'd like to think it is a change for the GOOD. I'll keep updating things here.

Ever_Hopeful

I learned today that my new GI wanted to take me off of Imuran due to possible cancer risks. So, I'm just on Humira. How many shots per dosage are u doing? If u r only taking 1 shot every 2 weeks, you may need to ask your doctor if they can up you to 2 shots every 2 weeks. I was on 2 shots every 2 weeks, and it helped keep me in remission. My doctor mentioned that if I flare with just 1 shot... he will up my dosage on the humira again.