My Experience with Humira

by Sarah Birdsong

In February of 2018, I was diagnosed with Crohn’s Disease. I first started Remicade (Infliximab) which was unable to induce clinical remission. During this time, I was also taking Prednisone and Mercaptopurine (6MP). None of these drugs were able to make me comfortable and at my worst, I weighed 87lbs completely unable to walk. I stopped Remicade and started Humira (Adalimumab) in July 2018.

Although I achieved remission in a single month (which is unheard of), my body was now severely catabolic and beginning to shut down due to starvation. My intestines were so atrophied after months of being unable to eat that my body rejected any form of oral nutrition, necessitating total parenteral nutrition (TPN).

Ultimately, I was hospitalized for a month at the end of August 2018, where I had a PICC (peripherally inserted central catheter) line inserted and remained on TPN for several weeks. I was later released into the care of physical therapy, where I would undergo several hours of therapy daily to help me learn how to walk and eat again.

When I first started taking Humira, there weren’t many resources available to me online. Everything was too clinical or it wasn’t informative enough. I wanted to make a video providing the kind of information I needed that would have put me at ease, or possibly even made the decision to take Humira instead of Remicade. I would have been in remission far faster and ultimately would have recovered faster.

Another important thing I feel like needs to be said is that I have not experienced any hair loss from Humira. My hair loss was diagnosed as Telogen Effluvium, a depressing symptom of malnutrition and stress. Hair loss is frequently experienced with patients with inflammatory bowel disease with surprising frequency. My dermatologist assured me that because she could see my hair growing back even in my bald patches, it was not a side effect of the Humira. If you experience hair loss while taking Humira and it does not grow back, take it as a strong indicator that it is caused by the biologic itself instead of being a symptom of your flare. My hair is growing back beautifully.

How is Crohn’s Disease Diagnosed?

Reliable indicators of any given Crohn’s patient’s prognosis are lacking, so medical intervention is traditionally guided by signs and symptoms.

I was diagnosed with the Anti-Saccharomyces cerevisiae Antibodies (ASCA) blood test because all other traditional methods failed.

Most people think you can only test or confirm Crohn’s with a simple colonoscopy, but that isn’t true. They’re typically only beneficial for chronic patients and not acute patients.

Here are a few of the most common tests (all of which I received) and their shortcomings:

  • Colonoscopy.

This is a pretty standard test for Crohn’s and other bowel-related conditions. Mine showed inflammation, ulcerated patches, and blunted vili (your vili are supposed to look something like a shag carpet but mine looked like smooth linoleum, which turned out to be a reaction to wheat products due to Celiac Disease). However, this is only a definitive diagnostic if you have chronic Crohn’s, meaning you’ve had symptoms for some time. Your symptoms may have been minor and not enough to cripple your lifestyle, as it did mine. While in hindsight I had many small, otherwise deniable issues for years (abdominal pain and fatigue, primarily), my Crohn’s didn’t fully hit me until September, 2017, and nearly killed me.

Its acute onset meant I had no scarring, abscesses, strictures, or fistulas, which is what a colonoscopy is looking for. Because of this, many specialists simply told me I was having bad periods, was a hypochondriac, or a pill seeker. In the words of one, she had “no reason to believe this was anything more than a passing thing.”

During a colonoscopy, samples will also be taken. Mine didn’t present with the chronic inflammation results gastroenterologist look for when diagnosing Crohn’s.

  • Computerized tomography (CT).

I’ve had so many of these damnable things, I can’t even remember them all. CT scans are not sensitive enough to pick up minute inflammation. In the beginning, all my CT scans showed were swollen small bowels. I was asked many times if I had been struck in the abdominal area because my colonoscopy results didn’t have the classic signs my doctors were looking for. Around March, 2018, after I’d been formally diagnosed with Crohn’s (I’ll get to how shortly), I went back to the hospital with rapidly worsening symptoms only to be told that the CT scan picked up no trace signs of inflammation, and was sent home. A second colonoscopy showed that the Crohn’s was, in fact, spreading up my duodenum, which the CT scan failed to detect.

  • Magnetic resonance imaging (MRI).

This isn’t a bad method, because it’s more sensitive than a traditional CT scan. However, it just showed more of the same; inflammation with no scarring, abscesses, strictures, or fistulas. They didn’t know why, and I was sent home. Again.

  • Capsule Endoscopy.

More of the same, here. This is great for scanning parts of your bowels not reachable by traditional endoscopy or colonoscopy methods, but it’s just as useless if you lack chronic symptoms and scarring.

So, what will work for a prospective patient who has all the symptoms of Crohn’s but lacks its hallmark scarring and fistulae formation?

  • Anti-Saccharomyces cerevisiae Antibodies (ASCA) blood test.

After three colonoscopies, countless CT scans, two MRIs and one capsule endoscopy, my then newest gastroenterologist ordered this test. Anti-Saccharomyces cerevisiae antibodies (ASCA) are a specific and sensitive diagnostic marker for the Crohn’s disease phenotype. To understand how this test works, you need to know how Crohn’s works.

Everybody produces a protein cell called Tumor Necrosis Factor Alpha (TNFα). It aids in inducing fevers, inflammation, and the inhibition of viral replication, to name a few. To put it simply, it regulates your immune system’s response to illness and disease. It can also signal a protective immune response to help block certain infections.

TNFα, in healthy folks, regulates immune cells and inflammation in the body. However, if you produce too much of it, your body begins to suffer systemic inflammation—e.g., Crohn’s Disease, and a number of other inflammatory conditions inflicted by an overactive immune system. Excess amounts of TNFα cause your immune system to mistakenly attack healthy cells in the GI tract, leading to the systemic inflammation typical to Crohn’s.

Basically, immunoglobulin (Ig)A and IgG antibodies against Saccharomyces cerevisiae (ASCA) are higher among patients with Crohn’s than those without. TNFα influences the development of IgA-ASCA antibodies in people with Crohn’s Disease.

For reference, these were my ASCA antibodies test results:

Modestly elevated, but this modest elevation got me my diagnosis and treatment after hemming and hawing from professional’s for months who claimed I was simply an attention-seeking hypochondriac because I had acute aggressive symptoms.

If you have any questions about me, Crohn’s, or Humira, please feel free to ask; I am not a medical professional, but I can give you information based on my experience in hopes that it will help you.

ADDITIONAL READING

I have compiled a list of additional resources regarding this entry and its contents for researching the topics therein:

Humira (Adalimumab): if you’re curious about Humira and want to know more, visit their homepage.

Humira Cost Savings Card: a direct link to one of the most important components of your Humira care.

Support for Humira: for a sharps container, travel case, and more.

Crohn’s Colitis Foundation: the leader in research, education, and support for IBD sufferers and their families.

The Crohn’s & Colitis Foundation of America: a non-profit, volunteer-driven organization dedicated to finding a cure for those living with IBD-related chronic illness.

Crohn’s and Colitis Foundation Forum: a place to share your experiences with Crohn’s and Colitis.

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4 comments

matthew symons July 2, 2019 - 10:56 AM

Sarah, thats a fantastic, informative video. I have started taking Imraldi (which is sold under licence from Humira) its basically the same drug but sold under a different name. My bowel motions have improved tremedously over 4 weeks, but my sinuses and chest are taking a pounding. Did you experience much discomfort ? Im getting headaches, numbness in my toes, blocked and very painfull sinuses and on occasions blood loss (in the form of diarrhea.) If this is temporary then I will continue my quest for relief but if not then I feel the side effects outway my discomfort.
I’d value your opinion.
Regards
Matthew Symons (UK)

Reply
Sarah Birdsong July 7, 2019 - 1:38 PM

Hi Matthew, thanks for reading. I’m glad you enjoyed the video and found it helpful! That’s the whole reason I made it.

When I started taking Humira, I was 90-some pounds and in constant discomfort, so I cannot say whether or not I felt those things when I first started. I could barely walk and was basically wheelchair bound. I can say that I felt better the very next day. I was in remission within a month but it took me a lot longer for my body to recover because I had gone so long without eating at that point. I remember when I took the loading dose and it hurt so much I cried and was in pain all over my body and had to sleep for the rest of that day.

May I ask what your weight and overall health is? If you are in poor health, your discomfort may be related to your overall state of being instead of your Imraldi/Humira. If your body is starved of nutrition and is just coming out of a flare, headaches, numbness, and just plain difficulty existing overall are not that uncommon. I also had pain and discomfort due to the fact that I was literally starving and when I was put on TPN, I experienced discomfort too. However, TPN is known to cause body aches. I had starvation sickness; my albumin level is 1.7, my liver is producing elevated enzymes, and my blood counts are all over the place. Without artificial aid, such as steroids, I cannot and could not eat. Over time, this lead to intestinal atrophy. So while my whole body withered and died under the effects of Crohn’s, my inability to eat meant I was slowly falling behind the eight ball.

How long have you been on your medication? I, personally, would give it a little longer if you just started (it can take a drug upwards of 6 months to build up therapeutic levels in your body. I just got lucky) and keep in close contact with your doctor. Mine ran weekly blood tests (CBC and CMP panels) just to see how I was getting along.

Looking forward to your reply!

Reply
matthew symons July 8, 2019 - 5:49 AM

Hi Sarah, thanks for your reply. Health wise im generally well. Im actually more over weight (97kg) due to non-stop use of prednisone for 25 years. These are probably having a tremendous negative effect on my body but as I’ve been on them so long all the side effects seem normal.
The one thing that has always workied in my favour is my appetite. That’s always been good due to the prednisone but again, I really don’t know what damage it’s done.
My Imraldi does seem to be alleviating some of my stomach pains and the side effects are definately subsiding. Im injecting every fortnight and believe me, by the time that 14th day has drawn nearer my body needs the Imraldi. I can feel the physical difference it makes.
As for my consultant and my nurses at the clinic I couldn’t have asked for more support. They have been amazing.
Overall, how are you feeling in yourself now Sarah ?

Reply
Sarah Birdsong July 8, 2019 - 6:58 AM

Are you still on Prednisone? Prednisone wreaks absolute havoc on your body. I understand what that’s like, too, because my very first doctor had me on 60mg of it! And they didn’t want to take me off of it, they just wanted to keep me on it basically forever. My current GI told me that if you need Prednisone while taking other medications, you’re not in remission and that you should only be taking it if you have a sudden flare. I asked him how many times you can flare on a specific medication before it’s considered ineffective at managing your Crohn’s and he said that he typically only tolerates two flares a year. After that, he recommends switching biologics.

When I was on Prednisone, I was constantly struggling with aches and pains and in fact, my feet became so swollen that I could barely walk. Now that you tell me you’re on Prednisone, well, if I had to hazard a guess, I would think the pains you are talking about are from that. Blood loss through diarrhea is not uncommon with active Crohn’s, too. From my perspective (and of course I am not a doctor) I would think that once your biologic reaches therapeutic levels in your body, I would talk to your support team about weaning off of it. As a warning, it’s going to suck. When I got off my 60mg of Prednisone, I was so sick and miserable that I wanted to die. Once I was fully off of it and my body returned to its normal rhythm, all those mysterious aches and pains largely went away (apart from the stomach aches that I now had because I was eating again and stretching my stomach out. TPN also gives aches and pains but they were different from the Prednisone ones if that makes sense).

That’s just what comes to my mind, though! Please discuss any changes with your medication with your doctor/support team. It sounds like you’re getting great support and that’s amazing. I really struggled to find a good support team when I was flaring, so now that I have mine, I refuse to switch insurance just because I don’t want to have to start over.

In terms of appetite, if that is something you struggle with, I’ve been on two separate medications to stimulate mine that have both worked. I used to take Remeron, which, honestly, made me so hungry I could have licked paint off the walls. I also have Cyproheptadine sitting around the house in case I have issues with appetite.

As far as my current health, I am doing great. I am up to a healthy weight (160lbs/72kg) although I am trying to trim down a little bit right now. Well, I’m mostly just trying to get active again because I haven’t exercised at all since my health took a turn for the worst. I went on a bike ride yesterday and couldn’t go any further after 3 miles (I used to be able to do 20) so my boyfriend had to turn around and get the car to come back and get me. But I’m making strides. I’m in remission (I take my shot bi-weekly as mentioned in the video. I don’t take anything but the Humira, not even Prednisone) and eating well and working a normal 9-5 again. I feel a little tired after my Humira and it still bruises and bleeds, but it’s worth it. My Chronic Fatigue is out of control, but that’s just a Crohn’s thing, I guess.

Reply

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