Humira and me...

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RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/9/2009 7:01 PM (GMT -6)   
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 nono 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 smilewinkgrin So please please, give me all you got-- good and bad and things to watch for.

Thanks all...

Ryan out scool
 
Ryan
 
Meds:
No Meds!
 
Running (Every other day)
Weight Room (Every other day)
 
 
 
"May you have the hindsight to know where you have been.  May you have the insight to know where you are.  And may you have the foresight to know when you have gone too far." 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/9/2009 8:12 PM (GMT -6)   
Go for the Humira! I've been on it since May 2007, awesome meds! It has kept me in remission. It's totally worth it. The rep will be able to help you out a lot. Are you taking the pens or the syrnge?
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 1/9/2009 8:58 PM (GMT -6)   
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.
 


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/9/2009 9:08 PM (GMT -6)   
How did you guys start up? My doctor gave me a Crohns starter kit-- I have to inject 4 pens for the first go and then 2 pens in two weeks. Is that what you guys did, too? The issue I'm having is, I recently moved to Denver from Colorado Springs (at least an hours drive) and my doctor's office is very very poor in communications. So when they handed me this box I asked if this was all I needed and they said yes. Call me crazy but this is a big deal and I want to be sure I don't hurt myself.

Thanks guys

Ryan
 
Ryan
 
Meds:
No Meds!
 
Running (Every other day)
Weight Room (Every other day)
 
 
 
"May you have the hindsight to know where you have been.  May you have the insight to know where you are.  And may you have the foresight to know when you have gone too far." 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/9/2009 9:45 PM (GMT -6)   
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.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 1/10/2009 7:25 AM (GMT -6)   
Watch/follow the video. You will do fine.
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/10/2009 5:19 PM (GMT -6)   
Ryan, did you figure out the injections? How did the first injections go? Did u start them last night? When is your first dose?
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/10/2009 5:42 PM (GMT -6)   
Hi Sweetie--

Yes I did shoot up. :o) Since I had the "starter kit" I figured I would go for it as I've watch the video and lets face it-- the things are pretty easy to use (the pens, that is). I took all four doses and I used the little ice pack that the info pack came with to numb the areas and then clicked away. I only had one injection site react differently from the others-- I think I hit a vein or something as a little blood bump formed underneath. You can still see a bit of it but it has gone down.

That was this morning-- and as of now I haven't turned into a monster or the incredible hulk, nor has my ulcer shut up-- but i know these things take time. How long before you noticed a difference? And have you had any side effects?

Thanks,

Ryan
 
Ryan
 
Meds:
No Meds!
 
Running (Every other day)
Weight Room (Every other day)
 
 
 
"May you have the hindsight to know where you have been.  May you have the insight to know where you are.  And may you have the foresight to know when you have gone too far." 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/10/2009 6:35 PM (GMT -6)   
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.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


kelina
Regular Member


Date Joined Aug 2005
Total Posts : 322
   Posted 1/10/2009 7:23 PM (GMT -6)   
HI! i started the same way, but the my nurse at the gi'office did one of the 1st 4 to show my husband and i how its done, starter kit 4 shots, then 2, then 1 every 2 weeks. i started in july. it did wonders for me. my husband has to give me the shots though cause to me they hurt! i have to close my eyes and let out alil scream so i wouldnt know when to let go...lol
 
its totally worth it, and i'm a big baby so it could just be me....hahahah
 
i use to take benydril and tynelo wit it but i forgot to take in once and i didnt die so i havent done that again, do i have to?
28 yr old, female lower left moderate to severe UC since 2002
canasa when needed, can't do rowasa!
Humira since july'08


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/10/2009 7:46 PM (GMT -6)   
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?
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/10/2009 7:53 PM (GMT -6)   
Hi Sweetie--

Besides the "blood bump" I had with one of the injection sites, I have seen and felt no reaction. In fact, I can't even find the first two injection sites! But I have no tenderness or obvious signs of a reaction. I'm not surprised, though-- I rarely have reactions to anything.

During your remission-- are you 100%? I mean do feel no signs or symptoms of having had UC flaring? I ask only because even when I felt good, there was always grumpy bowels now and then.
 
Ryan
 
Meds:
No Meds!
 
Running (Every other day)
Weight Room (Every other day)
 
 
 
"May you have the hindsight to know where you have been.  May you have the insight to know where you are.  And may you have the foresight to know when you have gone too far." 
 


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/10/2009 7:58 PM (GMT -6)   
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.
 
Ryan
 
Meds:
No Meds!
 
Running (Every other day)
Weight Room (Every other day)
 
 
 
"May you have the hindsight to know where you have been.  May you have the insight to know where you are.  And may you have the foresight to know when you have gone too far." 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/10/2009 8:59 PM (GMT -6)   
I've learned to stick close to the belly button. Sticking in the general area of the belly button will keep you from hurting more. You will have sensitive places, u just need to find those places so u will understand what to expect. Each time is different. I switch to my legs every other month so they won't get so sore.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/13/2009 2:46 PM (GMT -6)   
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
 
Ryan
 
Meds:
No Meds!
 
Running (Every other day)
Weight Room (Every other day)
 
 
 
"May you have the hindsight to know where you have been.  May you have the insight to know where you are.  And may you have the foresight to know when you have gone too far." 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/13/2009 5:10 PM (GMT -6)   
Hey Ryan! Glad to hear from you and that the Humira might have a positive effect for you as it has the other folks. This might be a possibility for me in the near future, so it's great that all of you have given so much great input.

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/13/2009 5:12 PM (GMT -6)   
Carol, is the Remicade starting to lose it's effect on you? Or are you just wanting to move to Humira for other reasons?

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 1/13/2009 5:14 PM (GMT -6)   
Hey Edie, Remi is still working really well for me...just want to make sure I have a few more options! :-)
Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Ever_Hopeful
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 1/14/2009 12:00 PM (GMT -6)   
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.

RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/14/2009 1:58 PM (GMT -6)   
Ever_Hopeful--

WHat about dosing? I still am learning things about Humira, but is it possible to give you more in a shorter time? What other meds are you on?

Also, where are your ulcers? Left, right, all over? I'm told some of these meds like Humira and Remicade work better in some areas of inflammation and not other (no idea why!).
Ryan


Meds:

Began Humira on Jan 10 2009


heathd
Regular Member


Date Joined Sep 2008
Total Posts : 40
   Posted 1/14/2009 4:35 PM (GMT -6)   
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.
diagnosed 2004
Prenisone finally off (oct 2008)
Prilosec otc (1 a day)
Sulfasalazine (12 a day)
Flora q (every other day)
Remicade (failed oct 2007)
Humira (started oct 2008)
Multivitamin (1 a day)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/14/2009 4:41 PM (GMT -6)   
Ever_Hopeful:

What other medications are you on? I'm on 2 kinds of meds. They both help with the bleeding part. They both put me into remission. Maybe another pill along with the humira will help.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


RyanF
Regular Member


Date Joined Jan 2006
Total Posts : 358
   Posted 1/14/2009 5:07 PM (GMT -6)   
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.
Ryan


Meds:

Began Humira on Jan 10 2009


Ever_Hopeful
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 1/15/2009 9:02 AM (GMT -6)   
At the moment I'm on colazol, entocort, and weaning off pred. I don't want to take imuran though because of the possible side effects...I just wish this humira would work!

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/15/2009 9:01 PM (GMT -6)   
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.
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)

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