Terrified of Going On Humira

Hello to all,

I am brand new here. I have been reading threads for awhile and have the utmost compassion for all of my Crohn's buddies.

I am a 54 yr old male with fistulizing Crohn's Disease. I was diagnosed with CD back in '97 but I know I had it long before.

I have developed a perianal fistula, had the abscess drained and two setons put in for drainage.

Was on Cipro/Flagyl combo, got off the Flagyl because it was making me sick to my stomach. Continued on the Cipro and developed a C.-diff infection in the colon. I did two weeks of Vancomycin and it cleared up the infection.

The docs wanted to make sure all is clear and currently back on Cipro and half the dose of Flagyl, no problems.

The GI and CR docs want me to start Humira to try to close the fistula.

I'm OK with it but here is my problem.

I am terrified of all the warnings. I work in an office and there are people with young kids who are always coming in sick.

What do you guys on Humira do? How far do you go to avoid sick people?

How "normal" of a life can you lead? My wife and I used to do a cruise a year, now I'm scared of contracting something while on a cruise.

I need to know what kind of steps, how careful must one be while on Humira.

The way things read seems to me that if you get sick, virus, flu, bacterial infection you could die! I tinker with cars and occasionally get cut, should I be afraid if I get cut?

I am plain old scared! Please help!

I am so nervous that I will be seeing a psychologist to help me with all the medical problems.

Thanks for listening/reading.

Regards to all, Mike

Aww Mike, sorry to hear you've had some problems! Welcome to the forums!! I start Humira on Thursday, so I can't really give you too much advice on it, but there are many others on here that can.

I do have a close family friend who has been using Humira for years and she is a nurse, so I guess you can lead a pretty normal life. I know she seems to.

I hope that some of the people on here can calm your fears, I know they've helped me tremendously!

Good Luck!

I am currently taking Remicade but was on Humira at one point. You ARE !! able to lead a normal life on both. Well of course if your crohns is put into remission! But as far as everyday activities and being in contact with people you should have no problem. Dont let the readings deter you away from trying a medication that could be more than beneficial to your health.

:welcome: Mike......I was on Humira for a short time. I am now on Remicade...I have three kids and worried that i would get every virus they brought home as well...To be honest, I haven't noticed anything different....

My quality of life has so greatly improved from this med, it is so worth any risk associated with it.

Please check out the Humira Club thread in the treatment section. There is a ton of personal experience and testimonials regarding Humira. Good luck.

Thanks sooo much for the quick responses.

It's places like this and people like you help people like me!

I feel better now. They scare the bejesus out of you.

Some have told me that the warnings (for the most part) is all CYA by the pharmaceutical company.

I do not know how to adjust my life to taking Humira. I am sure you all had fears before you began treatment.

Thanks, Mike

I had a few fears but more of a hope that it would help me. Before I started taking the meds I was in really bad shape, so I was willing to try what my doctor recommended. Hopefully this will work for you so that it can allow you to lead a more normal life than now!

Hey Mike, I just started Humira two weeks ago and I share your concerns... I work in a school setting where kids are constantly bringing in new germs. I worry that my weakened immune system may mean more colds/flus/sick days but I haven't noticed anything yet.

Anyhow, I made the decision to go ahead with the Humira anyways... and I'll deal with anything that comes up later. I am just so desperate for relief from my flares that I will try anything. The warnings that come with Humira are scary, but I am keeping a close eye on things and my doctor said to call right away if I notice any problems, and I am getting blood drawn regularly. And, the injections are only every 2 weeks... It hasn't affected my life noticably, yet... Although, I am concerned about travelling and it will probably affect my future travel plans.

Good luck, and take care.

I'm not on Humira but I'm on a cousin Cimzia. I lead a perfectly normal life. I've gotten cuts before and no problems and I've also been around people with swine flu without getting sick. I don't think you should worry about anything. The warnings are just that warnings. Good luck

Thanks guys! I really feel better now after hearing your opinions. It's hard to get "real" info from anyone except a crohnie.

Thanks, Mike

HI Mike Welcome! I was on Humira and I went everywhere, golfing, and went to visit friends and family 10 hours south of me, so that meant bathrooms etc.. I took antibacterial wipes with me everywhere. Washed my hands alot and refrained from hugging or kissing alot of people I am a hugger by nature. All the side effects from any drug must be reported whether they are on placebo's or not, therefore it doesn't always effect everyone the same even common side effects. Everyone still gets colds or flu's you can't avoid airborne ones all the time. Being in close quarters would make the chances greater, but you have to enjoy life,, I did until it peter'd out. Good luck and stay with us to let us know how you are making out !

Humira for almost 1 year

I've been on Humira for almost one year. I wash my hands a lot and try to avoid people who are sick. The only thing I have had is a really bad sinus infection that lasted almost 2 weeks. Other than that I've been ok, and I work at a hospital for children. I'm happy with Humira so far and no regrets.

hi! im on humira and i must say i love it!!! since iv been on it i have had no problems at all with my CD. im also a nurse and iv had no problem in relation to being at work adn on it at the same time, i take the same safety precautions as everyone else. lol the company has to put all risk and side affects on the label even if there is a very small chance of it happening. hope it works well for you!!

Really there is not too many things to fear expect the fatal lymphoma side effect of all TNF alpha blockers. I was on Remicade for one infusion and had to be pulled from it due to an incredibly rare and elevated liver function. I am on Humira now and havent been sick at all during this period. At my high school the bubonic plague struck were almost a third of the school had a stomach virus. I didnt get it and three of my normal healthy friends did. There is not a gigantic risk, the companies just disclose the info to avoid lawsuits if someone did happen to die while on the med. Go on Humira, it should definetly help you get into remission.

Started my shots on Wednesday no pain and no problems yet.
best of luck be positive

i started it two weeks ago have another 4 jabs on wednesday was sore for a few hours (just the ones on tummy thighs were fine) but no other side effects other than everything has got a little worse but i was told to expect this same happened with infliximab.

only thing i dont like is how sore it is when its going in other than that it seems ok and im hoping it works

I also have a fistula from Crohn's and have had C. diff 3 times from all the antibiotics. Now I take Remicade, not Humira. I actually think I'm better able to fight off infection now that my immune system has settled down.

Nothing sucks like fistulas, in my opinion. I used to get all kinds of weird infections, probably from antibiotic overload,but since my overall health has improved I'm so much better. It totally gave me my life back, it is so worth it!

I agree with doing the hand sanitizer thing and all the standard wash-your-hands/don't kiss any sick people common sense stuff. I also take extra vitamins and load up on vitamin c-not sure if it works but makes me feel like I'm doing my part lol.

Best wishes on a sucessful treatment!:thumright:

I was on it for a year. I did get swine flu last year and was super sick but I almost felt like I didn't get sick as much over all throughout the year.. I have 4 kids so I am in germ land all the time.. everyone would get sick and I would not get it.. and I am not a handwashing junkie..I think you will be fine. I agree the lymphomia is the one I worried about..

Mike, I was right there with you just a few days ago. I have been having issues for a few months now. I have been on pred and mesasal along with a bunch of other wounderful over the counter drugs to help clear up and issues. I started to get a really bad heart burn type feeling in my intestinal area and it would not go away. Finally, last weekend i was so sick i was borderline barfing and getting such bloat and cramping that i went into the hospital. My specilaist is more than 3 hours away and there are not any docs who specialize in crohns and are not sure what to do with it. I was sent for blood tests, ultra sounds, and they all showed nothing other than a slightly elevated inflamation in the blood. Finally I went for a CT scan and the local doc freaked and told me his opinion. They wouldnt let me leave the hospital. I know they are doctors but after living with crohns for 15 years i knew a few things. I would not make any decision until my specialist reviewed the results and guess what, a total different diagnosis. I have to start Humira tomorrow and the only reason for the total change of heart is hearing what my options from a doctor her and what a specialist says. I dont know if there is a point to my rant but I have been on Remicade before and never had an issue. And since it is so similar to Humira I am guessing that the results may be the same. We always have to remember it dosent have to be forever. I wish you well and good luck. For as much as its worth, try not to worry.

Going on weekly injection of Humira. No side effects. I've been on it 9 months now and only got 1 cold.

So far so good.

I have now been on humira for two months and my life is nearly back to normal. WOW

Hi
I've been on Remicade (for a year and a half) and now on Humira for about a month. I love Remicade because it only took one day to make me feel brand new. Humira took about a week in a half to start working and its also really good. The only thing that sucks is that the meds burn while going in, other than that its a great medication. After I was on Remicade for a year I had a tumor in my uterus thankfully it was removed and I'm doing great now. Good luck and hope you can all get back on remission soon.

I own a preschool and have 48 children ages 3-8 who are sick all the time. Knock on wood I have not been sick once. I really think the humaria has made me feel so much better that my immune system is better than it was when I was not taking it. Good luck

After being on the H for 10 months I can report that it is no big deal to live with this medication, for me.

No side effects and it has been sucsessful in closing my fistula. And I feel better than in the last 10 years.

Hopefully it stays that way.

Good Luck my fellow Humies!

Bloods

I have been on Humira for five months and my bloods are nearly back to normal and I feel that I'm getting my body functions under control. So it looks like it is working. Unfortunately I am still having the odd wet fart.

MikeinBklyn said:

After being on the H for 10 months I can report that it is no big deal to live with this medication, for me.

No side effects and it has been sucsessful in closing my fistula. And I feel better than in the last 10 years.

Hopefully it stays that way.

Good Luck my fellow Humies!

Click to expand...

Still on the Humira sidelines : ) With another perianal seton placement today I'm in more turmoil...How have you been doing with the Humira for your perianal fistulas? Did you have colonic inflammation concurrent with the fistulas or was the Crohn's limited to Perianal Fistulas?

Getting ready to start Humira as well! Glad to hear positive responses..... Just waiting for a Humira nurse to come to the house to do the injection training! What's the least painful place for injection? Abdomen or thigh??? Love to hear your experiences!! Thanks!!!:dusty::dusty::dusty:

DS injects in the thigh
The stomach freaks him out .
Ask about adding lidocaine to the syringe and then control the push
Lidocaine is a seperate prescription but reduces the pain of the shots

Had my first four shots today. Feel strangely well already, but that could be placebo!

I won't be avoiding anyone, if I get sick, I get sick. The same as anybody else can. Apparently it's just a little harder to shift. Just take the shot and go on with your life, if you worry about it too much, you'll imagine side effects that aren't actually there. You need to believe it's working and not blame everything on the medication itself.

And if you do get sick, don't instantly think Humira. It could have happened either way.

Good luck!

Good luck to you too Lewis! Please keep us posted on how you're doing on Humira! Very interesting to see how everyone's experiences are!!!:rosette1:

I've been on humira for 6 weeks now, I have had a lot more energy since starting humira and haven't had the terrible fatigue like i had on azathioprine. I hope that it continues to work well for me

Hi, Mike. I was on Humira about 9 months. It did very well after about three months. I was doing every other week injections. I would take children's liquid antihistamine about 30-45 minutes before injection to minimize any injection site or other issues. I would only set the Humira injection pen out for about 10 minutes to not be so cold from the fridge, but not more than that, since I didn't want it to spoil. No issues for me other than fatigue sometimes the next day, so I would usually inject late evening on every other Friday to sleep off any effects the next day. The main thing is to (if you have the injector pen) to press firmly with it and don't let up until the injection is done, so that none comes out. Unfortunately for me, my body built antibodies to Humira and I spent 2 days in the hospital for observation a couple of weeks ago, as I flared again. I now have surgery the 9th of October, an ileocecal resection. About 4 weeks after the surgery I will start Cimzia, which is similar in that it is a TNF blocker as well but is delivered a little differently to the cells at microscopic level. It will also be a bi weekly injection. Hoping for the best as Humira was great while it lasted. It also got rid of nasty psoriasis for me.

I was told today that I have to go on Humira. the traditional drugs sent my liver enzymes through the roof and then my Dr did a genetic test to check the next level up. The genetic test shows my body will not agree with these meds. Researching about Humira on the internet, I know wrong thing to do, scared the heck out of me. Reading this forum has really helped. Thanks everyone for your posts.

Thanks for all the positive posts! I am newly diagnosed and will be starting Humira soon. You all put my mind at ease.