Hello New member with questions about Humira.PLEASE HELP

[Fitchick81]

Hello my name is Cheree,

GOD thank you I’m so happy to find people to talk to!
I was diagnosed with Crohn’s about 7yrs ago, and had my first surgery a little over 3 yrs ago. I was in remission till about 2 months ago and now my doctor want to start me on Humira, but I am very nervous about the drug. I really would like to here from anyone about their experience, or anything they have heard about the drug from other people. Please be as honest as you can! I’m so nervous about this drug because I live a very active lifestyle as a personal trainer and I do want to start something that is going to constantly make me tired or fat. Right now it is very mild and I hardly notice it, so I would rather stay off meds if they are going to make me feel sick. I’m suppose to start the drug this coming Monday.

Some questions....
What kind of side effects is there?
How long till the side effects wore off?
Do you loose or gain weight?
Or dose it make you puffy?

Thank you to everyone for helping me. I can’t wait to formally introduce myself and read about other people living with Crohn’s. If anyone has any fitness questions feel free to ask!!!!


Thank you
REE

 

[hanaa al baydany]

welcom ree in our family world.
i don't take humiran but i only can anusser 2 of yr questions. a person should take it for 2 yrs. Its side effect i reduce the immunity. it may cause headache.

but its benefit is great. and there is no drug without a side effect.

take care. and keep posting us.

 

[Rosemarie]

Hello Cheree =)
I've been taking Humira shots for... about 4 or 5 months now (cant think of the exact date I started them). I have to inject a pre-loaded pen shot in my lower belly every other week...
The first 3 or 4 times I gave myself a shot, I didnt notice anything at all. Then (I guess it was because my body finally started to become accustomed to the drug) I started feeling a difference. It basically just... made my crohns real quiet for the first few days after each dose. Then it would gradually wear off and I'd go through a few days of either freguent bowl movements or none at all. (That didnt ALWAYS happen... keep in mind my body is different then yours and I might have eaten the wrong thing or whatever and made my bowels active again. AND it tended to happen in the few days leading up to my next dose... that probably has alot to do with it.)

It will take you a few months to figure out how much and how often you need it. The best advice I can give you is to keep a detailed journal of how it effects you and how your feeling otherwise during the first 6 months or longer. That way you have a record of WHEN it started making a difference, how you feel in between doses, and any other symptoms or signs of change in your body. This is what helped me see a difference.
It also helps to take the journal with you to the doctor so you can review it together and use that information to get the best treatment possible.

As far as the side effects go.... in MY experience, the only things I noticed were fatigue (right after each shot), a little bit of acne (I think theres some kind of steroid in the drug and steroids always give me pimples- so that may not happen to you), and constipation (from my bowels being so quiet). The constipation part was the biggest problem for me. If you are taking the shots and not having enough bowel movements as you should be (what would be considered a "normal" amount for you) then DONT hesitate to tell your doctor. The side effects only lasted for about 4 or 5 doses (after it started working). Now the only thing it does is make me tired. I HAVE gained about 5 pounds since starting Humira. I believe it is because I have been healthier and eating more since I started the shots, and that is why I gained weight... it's not caused by the Humira itself.

Also- you should take your temperature if you ever feel sick. Humira will make infections worse... keep clean hands and take your temp once in a while, so if it ever spikes because you've picked up a bug somewhere, you will catch it early. I usually dont take mine frequently, but when I do feel the urge to take it, I write it down in my journal.
Once again... another perminent record of your progess that WILL come in handy.
I dont really write in my journal everyday... a few times a week is fine. A few lines about how you feel that day physically, any pain your having and how intense it is, any new symptoms, and how many bowel movements you've had (not something we normally write about LOL =) ...but the doc's need that info to know how active your disease is, and whether the Humira is working or not, so it IS important to keep a record of the average times you go to the bathroom everyday.)

Sorry I'm blabbing on and on =) ... I hope I've helped you in some way. I was just as scared as you when I started taking Humira. But honestly, I feel better now then I have in a very long time. Of course, the remission from this drug dosent last a lifetime, and there is always a risk it will give you lymphoma or one of the other problems I'd rather not think about... but it's working for me and I'm glad I didnt let that fear keep me from giving it a chance. I hope it works for you too Cheree =)


OH! P.S. (one more thing!) - if you inject the shot in your belly, SIT down when you do it. Relax your belly muscles and sit there for a few minutes after the injection. Helps with the pain... Its gonna sting regardless, but it hurts worse if you inject it into a tense muscle.

 

[Guest]

hi & welcome ree

i havent ever had humira, so i cant help with that. i just wanted to say hello, and yes - this forum is a real treasure to find!

good luck with everything.

dingbat.

 

[Nancy Lee]

Since I have never been on Humira I can't help with that.

Just popping in to welcome you to the forum!

Healing hugs~Nancy

 

[rooneyb]

Hi -
This is my first posting. I have been taking Humira since July. The worst part for me is injecting it - it hurts! I have been giving myself MTX injections for over 10 years but Humira made me cry the first few times. Now I ice the injection area for a few minutes and use the pre-filled syringes instead of the pens. It took about 2 months for it to start working for me. Right now, I just had bloodwork and had no inflamatory markers present! I have not felt any side effects - I had tried Remicade with no luck and have been cautiously optomistic that this will help. I had surgery for my Crohn's in September for disease/abcess that was present before the Humira (of course, the abcess was treated before I started the Humira).
I hope this is helpful to you and good luck with your decision!

 

[Kev]

Well, I haven't been on humira or remicade yet (tho its' still a future possibility). my homegrown, totally unprofessional take on all of this (even tho I may someday be forced to go this route) is that this form of treatment, altho effective, has some rather 'defeatist' methodology behind it. to use a very crude analogy, its like if the fire department fire trucks (our improperly functioning immuno response) have been loaded with gasoline instead of water to fight the fire that is IBD. So, they block the fire trucks from responding, as it would only make matters worse... adding fuel to our IBD fire, in hope that our fire will at worst just smolder, and at best just die out. in the meantime, fires not associated with IBD dont' get responded to either... so we are at the mercy of not getting any more fires.. (pretty remote with all those other bugs around to start one).. I mean, a better response would be to fix the fire trucks. But, as they can't seem to do that yet, I guess this is better than having an inferno rage out of control. Like I said, its' a crude comparison, but the more I think of it, the less I relish the thought of maybe being forced to go that route someday

That's one of the things that prompted me to risk so much on the LDN therapy.
I'm hoping the gamble pays off.. It seems to be, but its way to early to tell for sure. If it doesn't pay off, at least I tried to avoid the remicade/humira options

Don't get me wrong, if you are on one of these, and they are working for you, don't go jumping into something like LDN. Stay with what works for you, as it may be a 'one time only' sort of situation. the odds of going off of remicade (& possibly humira) and getting back on it successfully are really extremely poor. I just don't see lower (sorry to sound so negative) inflamatory markers as much more than an indication your immune system has been greatly suppressed, OK

 

[ranger35]

Humira

Hello,
I just joined up, with the intention of seeking help with some issues. before i got to that though, i saw your post and thought i'd reply briefly. I realize you posted a while ago, but it can never hurt to have more information. I have been on Humira for a few months now and have gotten fairly proficient with the injections. I use the prefilled syringe, not the pen. I have a bit of an advantage, only because i am a veterinary nurse and have given plenty of injections, as well as drawn blood on myself, so i didn't have to get over that particular hurdle. I've found that it really helps very much to take the injection out of the fridge and let it come to room temperature. It makes a huge difference Take the syringe out and begin icing the area where you will do the injection at the same time. If you ice for a FULL 25 minutes, you will find that these two easy steps decrease the pain by about 80%. I also tried both my belly and my leg at about 6 inches above the knee. For me, leg is much less painful, especially if i it on the bed or couch so that my leg is straight out in front of me Also, If you make a tent of skin with three fingers (thumb, pointer, middle) and pull up a little, you can make an injection site with your pointer on the side facing your waist - the skin under your pointer will be stretched and thus much easier to inject through. Leave the tent up while you slowly give the injection (if you do it fast, it hurts much more) into the space under your pointer about 2/3 of the way down from your finger to your thigh. It really isn't too bad, once you get over the inital aversion. I had my first 4 shots while I was hospitalized and the injections the nurses gave me were much more painful (even on a morphine drip), so I hope i've figured out a few good tips and they are useful to you.
As far as side effects, I don't think I have had any, except a little rashiness on my face, which actually might not even be related. Compared to most of the other meds I have been on for crohn's ( and i've been on all of them at one point or another), humira interferes with my life barely at all - no nausea or vomiting, no weight gain (except for that from reduced crohn's symptoms), no water retention, no cushingoid nightmare, no wretched body hair growth, no fatigue, no dizziness, no puffiness. I am not sure how well it is going to work yet, but I am optimistic at this point.
Good luck, I hope my post is helpful to you.