Entyvio Infusion Number Two

I had my second infusion of Entyvio today.  I had to delay it a week because I had a nasty sinus infection.  Entyvio suppresses your immune response, so it wasn't surprising when the sinus infection knocked me pretty hard.  I had multiple days of a fever over 102, which is insanely rare for me.  My primary care doctor put me on antibiotics pretty quickly, to nip it in the bud.  It's been two weeks, and I still have a bit of a cough, but it's getting there.  They won't do your Entyvio infusion if you're on antibiotics, so I had to wait an extra week.  Hopefully after this, everything stays on track since I've heard it's pretty important to stick to the loading doses schedule.

The infusion went pretty well.  The nurses still don't know how to deal with my veins.  I'm so tired of being treated like a pincoushin and having them digging around my arms.  The nurse today didn't even seem to know how to tie a tourniquet right. I've been dealing with regular bloodwork for more than 15 years, I know how to get my veins, I know the best places to prick.  Why don't the nurses trust the patient knows best when it comes to these things?  The second nurse got me on the first stick (after five sticks from the first one).

I've had a strange response to my posts about this.  I've been trying to post more about my diseases to raise awareness. People have asked me some of the strangest questions.  I think a lot of people think this is something new that I deal with, but it's not.  Here are a few things to know about my disease:  This isn't something I'll ever recover from.  I will not get better.  This is something I'll be dealing with for life. This is something I've dealt with for more than half of my life.  It's my reality.  Ulcerative colitis is a chronic condition that will be with me until the day I die.  There are many dark realities to this disease. I am extremely lucky, as far as patients with UC are concerned.  I know how bad it can get.  My cousin died from the disease that I have in my gut.  I do not need, or want, your prayers, your sympathy or your pity.  I post about it to raise awareness, because it's a harsh reality that millions of people are dealing with.  More than 1 in every 200 people suffers from Inflammatory Bowel Disease.  And it's hard to talk about, because we're taught from a young age that it's not polite to talk about poop.  And there's a lot about my disease that I don't talk about, and I'll never talk about with anyone except my doctor and maybe a few of the people I'm closest to.

But honestly, the majority of the time I AM FINE.  Please do not worry about me.  I am lucky that I am able to work.  I am lucky that I am able to live a relatively normal life.  Sure, I have a lot of doctor's appointments, and some days I feel not so great, but for the most part, my illness is barely even something I think about.  I will likely have to spend the rest of my life on medicines that suppress my immune system to stop my body from attacking itself.  It's something I've learned to live with.  Yes, I have an increased chance of getting sick.  But I still ride the bus and spend a lot of my time around the public...and let's face it....all people are grimy and germy and gross at some points.

I have a lot of people ask me about diet too.  I spent five years avoiding dairy.  I've gone gluten free. I've used probiotics.  I've gone meat free.  None of it worked.  Over time and through trial and error, I have learned what works for me from a diet perspective.  I cannot stress enough that my disease is NOT caused by food.  Some foods will make me feel more uncomfortable when I'm in a flare, but the disease is an autoimmune disease, meaning my body attacks healthy tissue.  From a diet perspective - I mostly eat whole foods, with very little processed foods.  I like to know where my food is coming from and what I'm putting in my body.  Local fruits and veggies from the farmer's market and eating what is in season is important to me, from an ethical and environmental perspective.  My stomach has trouble with raw vegetables, and many high fiber foods are off limits, but it all depends on how I'm feeling that day, what else I've eaten lately, and the quantity of whatever I'm eating.. I tend on the anemic side, so I try to get a lot of iron (and supplement with extra iron when I need it) from things like liver, spinach, beans and nuts.  But there are days that nuts will be the worst thing for me to eat. And I'm not perfect, and there are also days where all I'll eat is boxed Annie's Mac and Cheese and Lipton Cup of Soup.

I've had people be surprised when they find out that I have all of this "wrong" with me, because I never complain and I am such a positive person. Here's the truth - you learn to deal with it.  I was raised by a father who's solid daily advice is that the world is not fair and that you just have to deal with it.  I was raised not to dwell on things you can't control.  Being positive and happy is a daily choice that I make.  My diseases do not define me.  I can't stress actually how little I think about them.  Life is too short to worry about what could happen or to mope around thinking "woe is me".  Because the reality could be way worse than you could probably imagine, but I choose every day not to think about it.  If you live each day to the fullest, you don't have to worry about it. There are no guarantees in life.  All you can do is deal with the hand of cards you were dealt.  You'll be happier if you stop worrying, stop complaining and just start living.  And if you have a bad day, let yourself be sad or mad or whatever.  Feeling feelings is good and healthier than holding things inside.  And some days, just order your favorite food from your favorite place and indulge.  For me, it's a banh mi from a restaurant here in Buffalo.  It's the most delicious sandwich I've ever eaten and it immediately makes me feel a little better.

Entyvio Day One

I decided I wanted to blog about my experience with Entyvio.  I need to talk about my disease more.  I suffered so much this past year in silence, and that's not being a good advocate.

Today, I started on Entyvio.  It's a biologic medicine, so it actually changes your immune system to work towards lessening the inflammation in your body.  Humira, the drug I used to take,  is an Anti-TNF, meaning that it blocks the body's response to "tumor necrosis factor", which I believe is a type of protein.  Another common drug for those with crohns and colitis is Remicade, which is another Anti-TNF.  Entyvio works a littJle differently, by blocking lymphocyctes (white blood cells) from entering the gut by binding to the cell.  These medicines are complex, and whenever I research them, I'm always thankful I took that Human Biology class at Geneseo (shoutout to my roommate Liz for drawing pictures of the body systems with me while studying!)

Whereas Humira is self-administered, Entyvio is not.  I liked the convenience of being able to give myself a shot for the Humira.  Some people have trouble with giving themselves the shots.  Needles have never bothered me...I think as a result of my mother being a Type I Diabetic; I'd watched her give herself insulin shots and test her blood multiple times a day since I was born.  Entyvio is administered via an infusion at an infusion center.  The most convenient center for me is at Dent Tower, which is thankfully in the neighborhood where I grew up, less than a half mile from my parents house.  These things are important to consider when dealing with a chronic illness and not owning a car.  Luckily, I had my mom's car today, so I didn't have to worry about feeling sick on a bus after the infusion in case I had a bad reaction.

I was really nervous leading up to the infusion.  I drank about 100 ounces of water yesterday, since I'd read a lot of people say that being extra hydrated made it better.  I started to worry they wouldn't be able to find a vein.  Every time I get bloodwork or need an IV, everyone complains about my "rolly veins" and I end up with bruises and multiple stick sites.  What if they couldn't find a vein, and I couldn't get the drug?  What if I had a bad reaction?  What if I develop serious side effects?  Why did Humira work for more than two years and then suddenly give me drug-induced lupus?  What if something similar happens again?  How long would it take to work?  What if it doesn't work?  My colon has been acting up pretty badly, what if it takes a few months to work and I have to live like this for a while?  I barely slept last night.  I drank cup after cup of chamomile tea, trying to calm my nerves.  My hands started shaking to the point where I had to stop using my favorite mug because I was afraid I would drop it and it would break.

I got to the infusion center this morning, they quickly checked me in.  The nurses and staff there were all very nice.  The nurse who set up my IV told me that she'd had a lot of patients tolerate the drug very well, which helped to ease my troubled mind.  She took my temperature and blood pressure.  She was able to get a vein on the second try, on the inside of my forearm.  I had asked my friends for musical suggestions, and my friend suggested The Beatles, since it would be familiar and calming.  So with Ringo, John, Paul and George keeping me company, I got my infusion.  It takes about 40 minutes, they run the drug through the IV and then they flush it out with some fluids to make sure you get all of the medicine.

It's been about 8 hours and I feel alright so far.  I was pretty tired right after, but I think it was more from the stress and not sleeping, rather than from the drug.  I go back in two weeks for the second one.  The way Entyvio works with scheduling is first infusion, two weeks, four weeks and then every eight weeks after that.  I'll write more after my next infusion or update if anything changes between then and now.

Doctors and Lupus and Transfusions, Oh My.

I last wrote here in December.  I had tried to make a Rheumatologist appointment in October...the first time they could see me was February 24th, because doctor's offices make it so difficult to be seen by a specialist.  On March 14th, I was diagnosed with Drug-Induced Lupus.  The Humira I had been injecting was acting like poison in my body.  I had symptoms of this for more than six months.  In fact, when I first saw my primary care doctor in September, we had thought it could be possibly lupus.  Dermatologist and Gastroenterologist insisted it was not from the Humira, so I kept injecting myself with poison.  The pain got worse and worse.  I couldn't open things with my hands, I couldn't walk up the two steps onto the bus without assistance from the bus driver.  I lived in constant pain.  I can't take over the counter pain-killers, because they destroy my stomach and cause significant bleeding in my colon.

My Gastroenterologist told me he'd never heard of Drug-Induced Lupus from Humira.  He insisted on more tests to see if I had developed antibodies to the Humira and to check the Humira levels in my system.

The Rheumatologist gave me a steroid shot to treat the lupus.  My body reacted poorly.  I got really sick with a horrible pain in my back.  I couldn't stand up straight.  The pain took my breath away.  I went to Immediate Care, where they diagnosed me with a bad kidney infection.  Two days later, I ended up in the emergency room after literally collapsing in pain in the lobby of my apartment.  Doctors there continued to diagnose me with a kidney infection, gave me some fluids and sent me home with stronger antibiotics.  Spent the next week on the couch with a heating pad, drinking my body weight in fluids and watching Veronica Mars.  My Primary Care Doctor got the reports from Immediate Care and the ER, realized that none of the cultures developed anything so I did NOT have an infection.  She rushed me to imaging to make sure I didn't have a pulmonary embolism (blood clot in the lungs) and ran some more tests.  For a month, I could barely walk, stand up straight, or breathe.  My theory is that it was all from the steroid shot and the lupus.  My Rheumatologist would not treat my pain, or even take my pain seriously as I sobbed in their office.  They told me to follow up with the Gastro and to come back in October.

I was prescribed a week of oral steroids and physical therapy by my Primary Care Doc.  The steroids allowed me to feel perfect during my trip to NYC.  I was able to walk more than 6 miles a day, which sounds like nothing for someone as active as I typically am, but I honestly at the time, I could hardly walk the half mile to my office.  After the oral steroids ran out, the pain and stiffness came back.  Over the last two months of PT, I have relearned to use, stretch and strengthen my muscles.  I go twice a week to PT, and do the exercises/stretches three times a day.  It's the most diligent I have ever been with a workout regimen.  I'm so thankful that after losing a full month of my life due to pain in April, I can finally move properly again for the most part.

In May, the Gastroenterologist emailed me with "good news" that my Humira levels were low so I could go back on Humira but needed to switch from once a month to twice a month.  I immediately started looking for a new Gastroenterologist.  Again, it's so hard to get an appointment as a new patient, which is a disgusting part of our medical system.  I refused to believe that going back on Humira was an option.  I needed a second opinion.

From March until July, my digestive system has been completely untreated.  The only good news to me was that as the Humira got out of my system, the ulcerative colitis symptoms began to reappear.  It made me feel good to feel bad, since at least the Humira had been treating the ulcerative colitis, so even if I had all these problems, at least I could hold on to that fact.  As the rest of my body has healed, my colon has begun to flare...reminding me that yes, you do have this disease in your gut, you do not have a normal digestive system.

The lupus symptoms have slowly improved as the Humira has gotten out of my system.  It takes at least 3 to 5 months for it to really leave your body completely, and I was on it for almost three years.  My feet and knees no longer ache in pain when I walk.  My hair has begun to grow back..it's weird to get excited about things like maybe shaving your legs.  I honestly had no leg hair at all....baby smooth legs for months.  But I had bald spots on my scalp, and every new hair is a chance that I won't have to start wearing wigs.  My head itches as I can feel the new hairs poking through my scalp.  It's the best itchy feeling I've ever felt in my life.   I still have stiffness in my fingers and wrists, but hopefully it will continue to improve.

I saw the new Gastro last week.  She seems nice.  She will not put me back on Humira, and believes I did indeed have Drug-Induced Lupus.  She wants me to start on a new drug, Entyvio.  She gave me oral steroids to hold me over in the meantime, which I'm already so thankful for.  Anyone who has lived with symptoms knows what a relief it can be to treat them.  I'm a little scared about the Entyvio.  It's the kind of medicine that you have to go to a transfusion center and get injected via an IV.  It will start with one transfusion, then two weeks later, than four weeks later, than six weeks, then hopefully every eight weeks.  Cross your fingers my insurance approval coverage of this and that it doesn't cost too much.  I've already spent more than $3,500 out of pocket on medical expenses in 2017 alone.

I'm scared to start on another biologic, but also excited to maybe feel normal again.  I'm scared of all the millions of side effects that come from these medicines.  I'm scared that they'll have trouble getting veins to actually do the transfusion and I'll have to get a port.  I'm scared that the medicine won't work.  I'm scared that I'll get another scary side effect.  But I'm hopeful as well. Hopeful that maybe I'll get another few years of relief.  The Humira, for all the issues I've had this past year, it did give me two full years of feeling great.  Hopeful that maybe my colon will someday stop being an issue because maybe we'll find a cure.  Hopeful that maybe someday we'll have better health care in this country, that years of fighting doctors and insurance and drug companies will some day be a thing of the past.

As most of you know, I hate writing about this kind of stuff.  I am an extremely positive person, I hate admitting that I have anything wrong with me.  I refuse to let it hold me back.  This past year has challenged me in ways I'm still trying to figure out.  My health struggles have just been a part of the emotional burden I've been holding on to this year.  But it's all welling up inside of me, making me stronger, and making me better suited to stand up for all the things I believe in, to keep fighting the good fight.   I'm thankful to you, whoever you may be, for reading this, for listening to me, for putting up with me, and for supporting me in some way.  And to my close friends who listen to me complain all the time, you know I'd be lost without you!!