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scared to go on humira help me

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Posted 4/14/2011 8:47 PM (GMT 0)
So I have to go off my 6mp because It caused me to go into chemo induced anemia. So now my doctor is waiting to put me on humira. I have heard many scary things that can happen to your neurological health and cancer scary stories. Can I just have some input on people that have been on humira or are on it now? Also what is this about ur first shot is 4 times? Thank you all.
Posted 4/14/2011 9:22 PM (GMT 0)
Hi there--I recently started Humira (Feb. 2011) and like you was scared to death to begin the drug. I can tell you my experience so far has been pretty ok. The first dose is 4 shots (loading dose), then two weeks later the dose is 2 shots. Two weeks after that, it's one shot and then one shot every two weeks after that. Some people do the injections every week, I believe. With my first loading dose--I really didn't notice any side effects. I had a lot of anxiety the first day or two, but I truly think it was because I was so nervous about being on Humira. My bowels did slow down a bit during that first loading dose and I had some crampy/type pain with BM's for a few days, but once I got on the single doses every two weeks that has gone away. I will say that my sinuses felt a little bit stuffy--like an allergy for maybe a week or two and I haven't noticed it since. My temperature has been around 99 degrees pretty consistently since being on the Humira, and I'm told by my GI that it is a side effect of the Humira and to take tylenol as needed. I was really worried about that too for a few weeks, but then I had some blood work and everything came back normal, so I'm trying not to worry as much now. I will have my blood work repeated in a month. Other than those things--I haven't noticed anything else related to the Humira. My Crohn's was active at the ileum after 2 resections in the last two years, so that is why I'm on Humira. I wasn't really having a ton of Crohn's symptoms, but Imuran made me feel crappy and I needed something to get me into remission and keep it there. I think it's too early for me to say if it's working or not.

I totally understand the scariness of this drug. My advice is to give it a try and keep an open mind. I've not been sick with any infections that would require an antibiotic or anything like that while taking the Humira-- even being around a ton of school-aged kids and a sister that had pneumonia recently.

Good luck! I would be happy to answer any other questions you may have.
Posted 4/14/2011 9:50 PM (GMT 0)
I have been on Humira since 07 now it has done wonders for my disease at 1st I was apprehensive about giving myself the shot. I went to my GI office for the first 4 shots. The nurse did 2 and had me do 2. I initially started with the pens but now use the regular syringes and I need mine weekly. Sometimes the pharmacy messes up and gets my the pens.
Posted 4/15/2011 4:33 AM (GMT 0)
I found the self-injection to be far more intimidating than any minor risks. If I stopped to worry about every tiny risk, I'd never get anything done.

Aside from it not working very well, I never had any problems with it.
Posted 4/15/2011 5:18 AM (GMT 0)
hi there
i am on Humira now for about 6 months or so. I use syringes. for most people i think it is 4 shots first day, 2 shots in two weeks, and then one shot every second week after. Some need it every 10 days or every week. for me it is still every two weeks.

CD had been in remission for years on imuran only and so when i experienced this flare in 2010, we'll call it the year of the flare I guess ;), I needed more, Started Humira and honestly it has worked very well for me so far.

I am having some frustration with infections right now. You can check out my strep throat post but it is really not about fear of humira so much as fear of having to stop my humira in order to clear up the infection, because i am just not sure i am in remission again already- so will lovely crohns decide it has a chance at me again if i take a break from the needles? I am not sure how that all plays out yet. Maybe someone who is more seasonsed with humira can help u there.

the risks are scarey but the % of those major side effects are low. it is important to be aware of the risks and discuss the pros and cons with your dr, family, anyone who u trust of course, but my opinion is, if your life is suffering and/or your disease is out of control, try it! it is not as bad as it seems when you are just being introduced to it.

best of luck with your next steps

B
Posted 4/15/2011 8:33 PM (GMT 0)
I've been on Humira since Oct. 2010 and it gets much easier with time. The worst about the injections is the anticipation of the injection. I now put them on and I'm used to them. The side effects I've had from it are headaches and weight gain. But for everyone it's different. I've stayed away from reading many of the scary stories online because there are scary stories about everything you look up. Hope the Humira helps you
Posted 4/16/2011 4:50 AM (GMT 0)
hello there, I try to tell as much people as I can about Humira --to alleviate the fear of taking the shot. It is a very scary and intimidating idea at first. I had a mini panic attack waiting in the doctor's office lol. But once I took the shots, and realized the anticipation is worse than the actually pain of the shot (I wouldn't even call it pain -- more than a little stingy feeling -- VERY bearable) Something I don't fell anything at all.
I don't know much about the symptoms, but I have been symptom-free. I know some side effects can seem scary, but when it's about your Health, sometimes you just have to go with, in order to get better.
Hope this helps, best wishes and feel better soon,
Kim
Posted 4/16/2011 4:41 PM (GMT 0)
I have been on Humira since dec 08. Just let it warm up 15 or 20 minutes and you won"t feel a thing. I have taken many of them and wondered if it actually worked. As for side effects as far as I know I have none only time will tell.
Posted 4/16/2011 6:42 PM (GMT 0)
I wish I could provide some reassurance, but sadly that's not the case. I was on humira for psoriatic arthritis for 1.5 years. I ended up being pulled off of it because I started to have MS like symptoms (tingling, numbness, burning in finger tips). The doc did 2 MRIs and both times they found MS like lesions in my brain. A total of 6 lesions ended up appearing. Apparently one of the rare side effects of humira is drug induced MS. Luckily it can be halted or reversed if you get pulled of the drug in time. After they pulled me off the humira I've never had more lesions. It never advanced and I don't have official MS. It is a word of warning though. All TNF inhibitors can cause this side effect, but docs say it's relatively rare. I guess I'm just one of the lucky ones. ;)

Humira does have some wonderful benefits, though. I'm being tested for Crohn's now and have had Crohn's like symptoms for 8 yrs. During the 1.5 yrs I was taking Humira, the diarrhea and abdominal pain all but disappeared. IT was great. Humira was also the best drug in dealing with my psoriatic arthritis.
Posted 4/16/2011 9:42 PM (GMT 0)
I have been on it for 2 years. The drug has given me my life back. I did change my diet from junk food to healthy food when I started the medicine. I wanted to make sure that my body would work effeciently as possible fighting infection. I have hardly been sick.
Posted 4/17/2011 12:56 AM (GMT 0)
Hi there, I've been on humira since 2007 when remicade lost its effect with no major side effects or flares. As for decreased immune system, I have two schoolagers and a toddler and I don't get any sicker than ayone else I know. In fact, i haven't missed a day of work for myself in a couple years. Good luck.
Posted 4/20/2011 9:02 PM (GMT 0)
Does anyone know what the statistics/risks/figures are for lymphoma while taking Humira??
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