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Txgirl30 - Humira question

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Posted 4/20/2011 8:41 PM (GMT 0)
I just got approved for Humira and I should get it tomorrow. but I am really really scared of some of the side effects. Can y'all please share the good, the bad and the ugly of your use of Humira ??!!! Seeing the new FDA warning about the cancers its causing is REALLY freaking me out to the point that I don't know if I can start it.

*started your own post so you would get more attention*

Posted 4/20/2011 8:44 PM (GMT 0)
All meds have side effects and they are required to put the all the warnings out there.

My thought is do you want your Crohns to continue affecting you the way it has been, or would you like to start feeling better? My thoughts are give it a shot, you might be surprised.

We have many many members on Humira and I haven't heard of anyone getting cancer yet. Hugs!
Posted 4/20/2011 9:04 PM (GMT 0)
Thanks Nanners, its just sooo very very scary :(
Posted 4/21/2011 3:42 PM (GMT 0)
But wouldn't you rather be feeling better and have a more quality life? I hate being sick! Hugs!
Posted 4/21/2011 4:50 PM (GMT 0)
Well yes I'd like to get this drain out and fistula healed but I really don't have much pain or symptoms that I haven't been living with for years already. Its just that my doctor really didn't give me any other options other than Remicade, Humira etc. I would much rather try something else before hitting these "big guns" right off the bat :(
Posted 4/21/2011 10:34 PM (GMT 0)
I started Humira 12 weeks ago and on loading dose of 4 injections then 2 weeks later 2 injections then one injection every fortnight. After the first loading dose I was very tired, got really bad sinus pain and headache and indigestion. Everything bar the indigestion went away, I still have the indigestion although it is not as bad and I take omeprazole for this which works well. Only thing I find now is the day I inject I am more tired than normal so make sure I do it on my day off so I can have a sleep in the afternoon.

It started working quickly as the pain went away within a week, I have a stricture that was causing a few problems and getting painful. Then really started to notice things improving after about 6 weeks when the output from ileostomy started to slow and thicken.

So I would say give it a go. All the medications we take for CD have some nasty potential side effects and any immunosuppressant can increase risk of cancer occuring. My view is I would rather have 20 good healthy years and maybe, just maybe increase my risk of cancer than have 20 years of not living but just existing because I am too ill to do anything.
Posted 4/21/2011 10:49 PM (GMT 0)
Been on it two years and have felt great. I have had some skin issues, but it is worth it to be free of Crohn's symptoms.
Posted 4/22/2011 1:35 AM (GMT 0)
I have been on it since October 2010 and like it so far, feeling great- it pulled me out of a nasty flare- except I seem to find it difficult to get rid of bugs like strep throat... but not much worse than my hubbie who is in great health.

Needles aren't too bad... do u need info on that aspect of it?

The risks/ benefits need to be looked at for each of us with this decision to make... but what I recognized were the risks are rare and the benefits are so great if it works for you.

Best of luck

B
Posted 4/23/2011 3:40 AM (GMT 0)
Thanks all !!!
Posted 4/24/2011 2:54 AM (GMT 0)
Bumping this up as I am still reading and would like to hear from more users :) Thanks in advance!!
Posted 4/24/2011 12:30 PM (GMT 0)
I have been taking Humira for 18 months and it works for me. I wish more people would be honest on this site to allow us all to talk freely, open and honest. Keep bringing your thoughts.
Posted 4/24/2011 3:31 PM (GMT 0)
Thanks kmfdm :)
Anyone else?
Posted 4/26/2011 11:57 PM (GMT 0)
I get migraines from the humira. I noticed that im still congested and cant seem to get rid of this.
Posted 4/27/2011 12:48 AM (GMT 0)

Txgirl30 said...
Can y'all please share the good, the bad and the ugly of your use of Humira ??!!!

There was a more complete (good,bad,ugly) discussion about Humira warnings in January:
www.healingwell.com/community/default.aspx?f=17&m=1998231
Posted 4/27/2011 3:20 AM (GMT 0)
cool  this reply goes out to txgirl30: I hope I got your name right!! I haven't been on here in awhile so here goes--I've been on Humira since the 1st week of April and I like you was very scared of the side effects, that I literally cried and cried when I went to the hospital infusion room. But it was a piece of cake and my bloodwork now is stable which is good and I don't go back now until June for bloodwork again and also at that time , they wil check my Vitamin B-12 levels too. My Crohns as started effecting my liver now and as been sine probably 2007, but so far I have good liver function even tho my al-phos was up to 169, which my GI is not worried or concerned.

I don't have the dirrahea like I used to and the bad cramping and pain that I used to have, I don't have any more. The only side effect I've had with this is my sinuses have been kinda dry and I bruise more easily than normal. But other than that, I feel good. My eyes have always been dry but that was before the Humira.

In fact, I have t give myself another shot on Thursday. When I first started on April 15th it was 2 shots, then on April 16th it was 2 shots, then I went to 1shot every other week. I didn't think I would be able to give myself the shot, but I didn't have any problem with that except it does sting for a couple of minutes, but after that, I'm fine.

I can certainly understand your fears,as I've been there!! I also have 5-6 fistulas that my GI doctor is trying to heal with Humira, and I won't know if its working until he said 6-9months after Humira and then I have to go thru another scope and Barrium enema to see if Humira is closing any of my fistulas. Oh What Fun that is!!(ICK)

I would definetly give it a try, and as far as the cancers they talk about. my GI says that its pretty rare of that happening!

Good Luck with everything, and if you have anymore questions or concerns, let me know, as I'm in the same boat as you--Take care and keep me posted on how your doing!!--Silvergriz

Posted 4/27/2011 3:45 PM (GMT 0)
I've never had any side effects from my Humira. I have been on it for 2 years and inject weekly. The biggest headaches I get from it are annually renewing my financial assistance, the pain of injection, and planning around my injection dates if I'm going on a trip. I'm also a skinny guy so finding a new pinch of fat to inject into is a weekly challenge; which may be the reason I find the injections hurt so much. Otherwise, it has worked great. I used to be plagued by abscesses and fistulae - no more! And my doctor always says my inflammation markers are way down from where they used to be.

Good luck on it! I hope it works well for you. :)
Posted 4/28/2011 3:04 AM (GMT 0)
Thanks for taking the time to reply to my post and help ease my mind .......some. I guess I'm just in a funk, sad and mad etc that I have this darn disease cry   Its soo scary, just don't know what the future holds or what kind of other problems I may have I'm just freaking out and very very sad. Can't stop crying and pouring over the internet and crohn's forums sad   I'm sure I'm not the only one who thought "why me" in the beginning.............ahh well thanks for letting me whine
Posted 4/28/2011 3:08 AM (GMT 0)
Oh guess I should say that I started my humira today. My mom came over and gave me the 1st 4 shots/pens. Tried one in my leg and it hurt worse than the belly. The other 3 went in the belly LOL they do sting but I didn't have any reaction or anything. so that was good.

My GI didn't tell me when to come back in for blood work. What is the standard when you first start Humira?? When should I go back?
Posted 4/28/2011 5:47 AM (GMT 0)
wink  This reply goes out to txgirl30: When I had my first 2 shots at the infusion at the hospital, they did bloodwork on me, and then the next day, I went back up to the hospital and they did 2 more shots. Then I went to 1 shot every other week. In fact I have to give myself a shot tommorrow probably around 1:00PM or so. They told me that while I was on Humira, they do the bloodwork every 3months, so I'll be do for bloodwork again in June. With me, my Crohns has been affecting my liver, probably since about 2007, but so far since being on Humira, my liver ensymes have remained stable which is good!!

I ended up having to get financial assistance, because I had lost my job and couldn't afford the high cost of Humira, but it took me almost 2months to get approved, because I had insurance still from my last job but with a high deductible which I couldn't pay, so I ended up having to appeal my decision to the company, and they finally approved me.

So I guess when before I'm due again in June for bloodwork and refills, I'll probably end up having to call my GI's office to have them call for a refill for me, which I guess they send out a 3month supply.

Glad to hear that you didn't have any side effects--thats good news!! Keep me posted and hope you have continued good luck. My GI told me the only way that they would know if the Humira is working, is to do another scope and Barrium enema in 6-9 months after starting the Humira, as I have 5-6 fistulas and hes hoping that the Humira will heal those.--Geesh--What we have to go thru with this darn disease!! Hugs--Silvergriz

Posted 4/28/2011 4:48 PM (GMT 0)
I was on Humira for about 18 months to try to heal my abdominal fistula. It didn't work, but once I had the surgery (bowel resection) I knew why! There was a 2 ft long knot in the small bowel which included the fistula running thruout, plus inflammation and narrowing (don't forget the adhesions).

I was told to stop the Humira for a month before the surgery and will start it up again as a maintenance drug sometime soon - I will be asking the surgeon as to when that is when I see her next week.

For me the side effects were tiredness, and maybe worsening of my hot flashes (which have completely disappeared now that I am off Humira!). But despite the potential side effects, I still think I would rather take Humira than prednisone. (I also got off prednisone before surgery). I always made sure to plan for not too much activity on my Humira shot days, just in case.

The one good side benefit from all my surgeries is that I have very little feeling left in my belly, so I can give myself a Humira shot almost anywhere without feeling a thing - lol!

I sure hope it works for you!

Sudsmom
Posted 4/28/2011 8:50 PM (GMT 0)
Thanks for the replies !!! I'm hoping Humira heals my fistula, and i don't have to have surgery to remove it. I see my surgeon this coming Wenesday, as kinda a follow up plus I feel like I may have another abscess brewing in my other butt check.......great !!!!
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