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Starting Humira next week- Scared!

Hello,

I was diagnosed with Crohn's in 2004, had a very bad abscess which needed draining, then had surgery to remove 1.5 ft of small intestine. After that I dealt fairly well for 8-9 years, until the past year... My Crohn's is back as well as another abscess. I have gone around and around with my doctor, trying to avoid Humira because it really scares me, but it has come to the point where I have no other options ( I could have surgery again, but doctors really don't think I should). So I guess I am going to give Humira a try. I am really scared about it.

Can anyone please give me tips or tell me something to help??

I have read a lot of the posts on here, but anything extra that anyone could tell me would really be great!!

Thanks so much!!
Amy
 
Hey
I was really scared about trying Humira too. I cried when the nurse came round to show me how to use it. I had read some horror stories about it and freaked myself out.
You'll probably have a loading dose when you first have it, which is two injections. a nurse will show you how to do it but do the first one for you :)
I had my mum do the 2nd cos i couldnt face injecting myself.
it didnt hurt anywhere near as much as i thought it would. blood tests are worse.
you dont feel the needle going in at all, you just hear a click. and it just stings when the liquid is going in.
i have found that taking the injection out of the fridge for 15 ish minutes before hand helps with the sting. and i also put ice on my injection site until its numb. that way you dont really feel anything. i grab a bit of fat and inject it and its over in seconds.
i now do it to myself every week and have done for 2 and half years.
i used to inject in to my legs as i couldnt face causing more pain in an area which is already painful - my tummy. but now i find it easier to see what i am doing and it is less painful to do it in my tummy - i think because i have more fat there.
i sometimes get a little bruise and sometimes it bleeds a little but nothing dramatic. and once i got a welt like a weird skin reaction where i had injected. some people take an anthihistamine a bit before they inject if they find this happens a lot.

please try not to worry. i know how you feel, i was terrified! but now, as much as id rather not have to, i get on with it its all over so quick.
it kept me symptom free for 2 whole years so it is definitely worth a go!

any questions just ask :)
xxxxx
 
Thank you! I am happy when I read posts where people sound like its not really that big of a deal.

What about side effects?? Do you have fatigue or joint pain, or get sick often or anything like that?? That is the stuff that really scares me!

Thanks for replying!!
 
Not at all. After te first dose I did feel a bit tired. And if I am run down, the day after a shot I am a bit more tired than usual. But barely noticeable. I have no other side effects :)
Xxx
 
amwolf,

I too was terrified of the H. Three years later I don't even think about it!

H closed my fistula, that's all I know and I feel like a million bucks. In fact I feel better now at 57 than I did at 37.

You owe it to yourself to give it a try.

No reaction or change in fighting infections. I do not get sick more than usual. Don't forget the lawyers for the drug companies have to have a disclaimer a mile long. You get used to the injections.

Just remember, you have a pretty good chance of feeling a whole lot better.

Good Luck!
 

PsychoJane

Moderator
Hello!,
I was also quite scared at the idea of starting Humira at first. I was terrified because I had intense reactions to shots (I did some ICU from shots side effect) so I was worried something like that would happen with the starting dose. In order to help me with that the nurse came twice, one day after the other to set me with the loading dose. 2 one day and 2 on the following day. And well, everything was fine :)

On the side effect side, while the treatment was behaving properly, I would get migraine and tiredness on the day following the injection. Pretty annoying but tolerable. Ironically, I was getting less infection while on Humira than now. I believe it has to do with the fact I was not feeling so well during the time I was taking it so I was socially quiet and avoiding going out much so that is probably why I was never sick though.

Other than that it was ok. It works well for many, you just have to be aware of yourself and take action in consequence as promptly as possible!

Good luck =)
 

my little penguin

Moderator
Staff member
DS has had three shots so far.
other than sleeping in the day after he is doing very well side effect wise.
no real issues.
 
Thank you everyone!!!

I have another question... Is it standard to do 4 shots as the loading dose??

Also, I have an open wound from the drain that I just had removed. I am worried that it might not heal. Doctors say I should start the Humira anyways, but I am really thinking that I may want to wait a week or two...
 
Amwolf,

Yes, the loading dose is four injections. If using pens, leave them out of the fridge for ½ hour before using, this will lessen the sting.

I had an opening from the fistula when I started the H. From personal experience, I do not think it will matter that going on the H with the opening from the drain, it should heal normally if not a fistula tract. If it is a fistula the H will help it heal, it did for me.

I say go for it.

Best of Luck!
 
Thank you everyone!!!

I have another question... Is it standard to do 4 shots as the loading dose??

Also, I have an open wound from the drain that I just had removed. I am worried that it might not heal. Doctors say I should start the Humira anyways, but I am really thinking that I may want to wait a week or two...
The standard loading dose for Crohn's Disease is 4 shots the first time, then in 2 weeks 2 more shots. After that it is 1 shot at a time.

I have never had the absess thing, so I don't know about the time to heal. I think waiting a week or so might not be a bad idea, but I am not a dr. :eek:
 
I did my 4 loading injections yesterday. Maybe it's just a fluke but I actually feel better today. Still having diarrhea of course, but a bit more energy and a lot less pain. I've been feeling so horrible over the past month, that any improvement is wonderful. The shots were no big deal at all. The nurse did the first one in my thigh, oh my goodness that hurt. lol I did the other three on my own, and did those in my stomach. Barely felt it at all, so much better.

I have to admit that I worry about the side effects though. Like cancer. I read that they were rare, but it seems like every time I turn around I read about someone online that got something awful from it. I'm in such bad shape with my Crohn's though, that I have to do something. Does anyone else worry about the more rare side effects? Do you think it's just more common to find those horror stories online, but that they are still rare? I really want to stay positive about this, as I really think it could help me!
 
Hi Homebound.

Humira is a good med. It has helped my Crohns a lot.

I do think the side effects like cancer are as rare as they claim. People who are not having problems are much less likely to come online and post about how good things are going with the medicine.

Good luck to you.
 
I am on remicade (basically the same drug). It gave me my life back. When they did a colonoscopy, they could not even see any sign of the disease. It is a miracle drug for me. The percentages of people seeing same levels of success are quite high.

As far as TNF-inhibitor side effects... no big deal. You'll be more prone to opportunistic infections (sinus infections, ear infections, etc). However, I still only get something like that maybe once a year.

The lymphoma risks you read about are first of all VERY VERY small. I can already tell that you do not fall in two of the higher risk groups. The already small increased risk is primarily in male children. The other increase in risk comes if you take 6MP or Imuran with Humira or Remicade.
 
That makes me feel a lot better, thanks! I need to stop reading the horror stories. I've also noticed there are some people online that seem to want to scare others, not really sure why. Best to just not read that stuff! Thanks again!
 

PsychoJane

Moderator
I need to stop reading the horror stories. I've also noticed there are some people online that seem to want to scare others, not really sure why. Best to just not read that stuff!
Everything needs to be taken with parsimony but I think it is normal to be scared, they are scary medication. It is wise to consider the effect it may cause even if it is only a maybe. It is your body and after all, you are the only one that can accept or oppose to a treatment. You are the only one to fully live their benefits or their consequences.

For sure there are times we have no "choice", they allow you to gain a quality of life. This is a possibility that it has a cost, for some it has. I know some are highly putting emphasis on the side effects, most likely because they have lived them. Even though I have that tendency to play the ostrich when I start a new treatment, I rather focus on the good it may bring than on the side effects but, it is not for no reason that some are mentioned, and not without reason that some speaks them loud. I see it in a simplistic way, some people like to get artificial tanning even if they know that there are risks, it makes them feel beautiful. Our choices are harder but they come with great benefits. Being sick makes the philosopher in me grow.
 
I think it is very good to know about the risks, but also good to put them in perspective. I can scare myself pretty good after reading horror stories, but it's also good to remember that a lot of what I'm scared about is a risk of 4 out of every 10,000. I have better odds of dying in a car accident, yet I get in the car every day without a thought. My heart does go out to those who do happen to have these things happen to though. I don't think they are trying to scare us, although I have read things online that seemed like there are people who don't like medication in general and really try to play up any side effect in hopes of making people not take them. That I don't understand, because I think it's down right irresponsible to do that to people who may really need the medications.

I'm actually already seeing some improvement and it's only been a few days. Maybe it's just a coincidence, but I haven't had any pain, my diarrhea is lessening and I've had more energy the last two days then I've had in over a month. That is quite the change from having to take pain medication daily and basically just wanting to stay in bed (or the bathroom). Got to say I am very hopeful this going to help me!
 
I got my humira bin and pens delivered yesterday. I keep reading everywhere about how painful the injections are but I've been through a lot worse so I'm excited to start!
 
No, I have not started it yet. My white blood count has been high so I have been on antibiotics trying to get rid of an infection that we don't even know where it is. I am having another CT scan and more blood work again tomorrow. Anyone else ever start on Humira with a high white blood count??
 
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