a cautionary tale for anyone on Humira

Hi everyone in HealingWell land,

It's been awhile since I've posted, but I'd like to give you an update. I'm a 29 year old woman, just graduated from nursing school, studying for my boards exam, diagnosed with Crohn's in 2006 (had disease since 2004).

It's been a rocky road trying to find an effective drug to manage my Crohn's. If I'm not legitimately allergic to a drug (and I mean full-on anaphylaxis), then I have some strange adverse reaction (ie. erythema nodosum) or it simply doesn't work. After trying Remicade last December I developed a "Remicade infusion reaction" on the third dose. This was very disappointing because the drug seemed to be working great! Last May I was hospitalized for the first time with diffuse gut inflammation. I was back on Prednisone for a few months and began the drug Humira (along with Imuran). I should say that Prednisone and Imuran are two drugs that I tolerate well, but of course, steroids are never a good option long-term, and Imuran doesn't help me enough. After a few months on Humira I was feeling pretty great. I was working out tons in preparation to make the 17 mile round-trip hike to the top of Half Dome in Yosemite. For the first time in 4 years my anemia seemed to be a thing of the past! I was super strong and feeling on top of the world. During this time however, I seemed to be developing a slow growing cyst on my left buttock. Yeah, funny, funny, I know:) By early October that thing turned into a full on hot red abscess. It was so inflamed that you could literally feel the heat through my pants! I went to my primary care doc and she did a I&D (incision and drainage) and prescribed some prophylactic antibiotics. She explained to me that these abscesses are rarely infected and that I should be fine. Sure enough, my abscess turned out to be infected with staph aureus.

One month passes. I am working a shift in the ICU one night and all of a sudden I start shaking so bad that I can't walk. Within a few hours I have a temp of104.3! Long story short, (sorry, to late for that!) I was diagnosed with infective endocarditis and told that this condition has a 30% mortality rate. Holy cow! Apparently, opening that abscess caused the staph to be released into my bloodstream where it traveled to my heart and created a "vegetation." These vegetations (a blend of bacteria, fibrin, platelets, etc.) can destroy heart tissue and lead to heart failure. I am so lucky that mine was discovered early enough and that I was put on IV antibiotics to kill the bacteria. Had the vegetation in my heart been just 1/2cm larger, I would have had open heart surgery to have it removed. Ultrasound showed that the bacteria sent septic emboli (eg. clots of bacteria) all over my body- to my brain, my liver, my toes, etc.) I am lucky that none of these caused a stroke, heart attack, or pulmonary embolus. The bacteria also "seeded" themselves in my right ankle- I couldn't walk for over a week! This was the CRAZIEST thing that has ever happened to me. I still have a PICC line in (it will be 8 weeks next week) because there is still an abscess in my right kidney. As horrible as this has been, I still feel lucky. Lucky to be alive and lucky to have graduated nursing school shortly after being discharged from the hospital. What's even crazier is that I was given 2 out of the 3 awards given to my class: an award for the highest overall GPA as well as a leadership award. Talk about trying to compensate for being sick, right? Sheesh.

The reason I'm telling this story is not to scare anyone, but to urge you to pay attention to any changes in your body while on Humira. This drug is no joke; it carries some very serious life-threatening risks. In fact, two of my Crohn's friends both developed chronic sinus infections from it and lost their voices- one for a year, the other for a year and a half. While it's great to be symptom free for a while, this drug can create problems for you that are way worse than anything Crohn's can do to you. Just stay informed, talk to your docs, and be careful. I don't want to see anyone else going through what myself or my friends went through.

Blessings to you all. Be well!

-Jenna

I totally agree, i had a UTI with no symptoms other than fever. It moved into the beginings of septacemia before i or anyone else (except for Ivy ) took it seriously.

Is Remicade the same as Humira? Do they have similiar side affects?

I'm suppose to start it in two months and a little apprehensive about it.

Well this is certainly a sobering thread. Hepatosplenic lymphoma sure doesn't sound like much fun.

This is such a cliche, but since my bad flare two years ago and the birth of my daughter 18 months ago, I truly treat every day as a gift and am just thankful to be alive and feeling as well as I do. I guess the only solace I can take in a thread like this is to remind myself that these effects are rare and to hope I don't lose the lottery...

can you link me to that, Rider Fan?

Herbert Smith said...
This guy is a father of Rob - the guy who died from Humira: www.facebook.com/johnaharder
He is forming a group of parents whose children got lymphoma from anti-TNF drugs and died. Apparently it's not as rare as FDA claims - he found a fair number of them already. In my personal opinion, helminthic therapy is more effective (Humira is just 35% and HT is over 80%) and MUCH safer than biological therapy.

Why pay thousands of dollars for worms, when you can pay way less and try SCD or MD or other natural remedies first?
I wonder if the right blend of probiotics might do the same thing as the worms in modifying the immune system or whatever is going on inside.
So far, the worms seem like everything else: it depends on the person.
Lots of drugs initially have high remission rates too.

Your post is scary. The biologic drugs may have also saved lives.

Here's my problem with biological drugs(remicade, humira, cimzia, etc):

they completely turn off a major part of the immune system, the one that produces TNF-alpha. The problem is that same mechanism is the same one that fights infections and cancers. No one knows what kind of cancers it will cause after using them for 10 years, or for 30 years. Not even FDA knows that.
It's like fixing a fine swiss watch with a hammer. The human immune system is an incredibly complex mechanism that took millions of years to evolve to work well with our environment. So we went ahead and changed our environment in the last 80 years (namely got rid of a lot of beneficial organisms such as helminths) and now we wonder why that finely tuned mechanism is malfunctioning, and we are using a hammer to fix it. These autoimmune illnesses were almost unheard of before 1920. They still don't exist in Africa - not Crohn's, not UC, not asthma or multiple sclerosis. Really, look at epidemiology records. I have.
Helminths have evolved with us for millions of years - that's the longest clinical trial ever. Our immune systems were designed to co-exist with them. Right now, today at this very moment - over 900 million people in the world have helminthic organisms. Humira has at most 10 years of trials and it was already implicated in infections and cancers.
I rest my case.

Herbert Smith said...
if at least one other forum member feels the same way as tsitodawg, I'll be happy to limit my mentions of HT purely to the other thread dedicated to HT.

Thanks.

I feel the same way. It seems like you post on every drug thread and discount the effectiveness of the drug, bringing up the worms. I'm happy that they work for you. They're not for everyone, though, and the way you seem to be pushing them in many threads is getting old. Just my two cents.

Seriously, I do not want to lock another thread, and the most recent posts were deleted as they were ot for this thread.

 

I've been getting cysts and boils for the past year and a half (have been on Remicade for 2.5 years) and my eczema has been acting up the past few months. Jenna--I've had that kind of cyst on my buttock as well; it's so painful! According to my GI, I have an abscess from a staph infection underneath my armpit. I'm going to the derm tomorrow...whenever my colon is fine, something else is wrong

ot = off topic lol

I've been reluctant to post this in the past, but since this thread specifically covers this sort of stuff, I might as well.

I was on Remicade for 8+ years. It worked great, and it really gave me my life back. No issues, no reactions, just years of symptom free living. I was on the double dose, 1000mg ever 7 to 8 weeks.

Last year I was doing great, I had an infusion in January and went on my way. Shortly before my next infusion, I woke up feeling funny on Sunday morning. The day before had been totally normal and no issues at all. Anyway, Sunday progressed and I kept feeling worse. I didn't really know how to describe it, other than "heavy limbs", trouble walking, really tired, etc. We came home from church, and I climbed into bed, popped a couple of tylenol and thought I'd sleep it off. Around 5pm I woke up and felt worse, I could barely move, sore and achy. I stayed in bed. At about 9:30, I woke up again, really feeling worse. My wife called an RN friend of mine and gave her the scoop. She told us to call the on-call doctor. The on-call told me to go to ER. Seemed like a good idea, so I asked my wife to help me get out of bed and get dressed. She tried to get me up, but couldn't. She's 5' 0". I'm 6' 4" and about 220lbs. She tried again and I went down like a sack of concrete. I didn't faint, it was my legs that couldn't support me. I landed with my right heel somewhere up by my shoulder blades. Didn't break anything, but she had to dislodge my foot from my back. No way I could stand up. Called the on call back, she said to call 911. Ambulance came, Fire Dept. came and they scooped me up and hauled me off. I had enough time to think about what was going on. I didn't know if it was a stroke or a brain tumor. After laying in the ER for a while, a Neurologist came in. Did my history and then did a spinal tap. At that point I couldn't move. After getting the test results, he told me I had something called Guillian-Barre Syndrome, also known as Acute inflammatory demyelinating polyneuropathy. In simple terms, my own immune system had attacked the protective lining over my nerve bundles. Result is rapid onset of paralysis. By the next morning I could only move my head, nothing else. After 5 days in the hospital, they transferred me to the rehab hospital for another month of intense rehab and care.

Turns out one of the VERY rare side affects of Remicade is Guillian-Barre. The first couple of days in the hospital were pure hell. I was scared to say the least. The month in rehab was totally awesome, really, a wonderful experience that I will remember all my life. Great therapists and medical staff.

GI researched it, and I guess after all the required reporting, it was determined I was either the 13th or 14th case of that ever happening to Remicade patients.

So, it is VERY VERY rare to get that from Remicade. Based on the millions of doses of Remicade given, I still think it's good odds. I still love my Remicade, but I can't take it anymore. I loved it, it worked great, and I'll recommend it to anyone who asks.

Like others have said, ALL, ALL medications have side affects. People have died from taking asprin. If your fear of a possible side affect keeps you from trying a medication, you might be missing out on something good. Even looking back on all I went through last year, I still think it was worth it, and would make the EXACT same choices all over again, even knowing the outcome and the risks. I had 8 or 9 wonderful years on Remicade!

I have a similar story to mmckenna's. I went on Remicade after havinga severe abscess and underwent a fistualaotomy. The Remicade worked great! Miracle drug for me! My abscess healed right up and I was feeling better than ever. about five months into my Remicade treatment, I was diagnosed with cancer. Now, no one can really tell me if the Remicade caused the cancer or not but it was a risk that I was well aware of. Not many people have such serious reactions to the anti-TNFs but it does happen! I still love Remicade even if it caused my cancer. If my doctor allowed me, I would be back on it in a hot second.

When starting any type of new medicine, whether over the counter or not, be aware of any risks and reactions! Be well educated and don't be afraid to ask questions. Another biggie, if you think something is wrong, don't be afraid to go to the doctor. It won't hurt! Pay attention to your body and any warning signals it may be giving you.

Most of all, never give up hope! :)