First off, I would like to say that I am doing a lot better than I was a couple weeks ago. Prednisone may be the devil’s pill, but it really does work wonders fast. Just usually comes with a cost.
I did see my doctor today and it was decided that we should just jump on board and start a treatment plan. My options are a little more narrow since I stopped responding to Humira and have seem to reject every other option under the sun (Mezavant, Imuran, Cortiment, the list goes on). So we had to do some creative thinking. Currently the plan is to go ahead and try out Entyvio. The hope is that by the time I wean off prednisone, Entyvio can kick in and take over. But he’s also thinking ahead too. If I reject this my next option is Inflectra but if I were to take this option I would most likely have to also be on Methotrexate as well, since Imuran is out of the question and in his past experience it usually only work when you are taking something else as well. Again if this fails then we are looking at Stelara or if all fails then at least by this time it will be closer to November and we can just sign me up for some clinical trials.
It’s a start. I’ll take whatever I can get at this point.
But I wanted to shed some light on my experience with Humira.
I know for myself the thought of starting biologics was absolutely terrifying. Not only is the word “immunosuppressant” scary enough, but I think it really solidifies how bad your disease is. Generally doctors prescribe biologics after they’ve exhausted a number of options, so a lot of people who are told they will be starting these treatments might feel like their backs are up against the wall because at this point what other options do they have? Natural remedies? Surgery? Very little is what it is from my experience.
I remember when I was told I was going to start Humira that I just cried. I was sick. I was really really sick. It was one of my many turning points in this journey. And then you go home and google the drug and get all these horror stories and start panicking that your probably going to develop leukaemia or tuberculosis from this drug. Note, that most of these horror stories were from when the drug first came out back in 2013. I had a hard time finding a lot of horror stories now in 2017, but they do exist. So you end up kind of just diving into this treatment plan blindly hoping for the best and hope to god you don’t pick up anything nasty.
I was a germaphobe my first few months on the drug. I hand sanitised so much that they were perma dry and smelled of rubbing alcohol always. I had mini bottles in my car, at my desk, in my room, in the bathroom, and in all my purses. Looking back, it may have been a bit excessive.
But was it scary?
Was it really bad? No.
It was by far the easiest treatment I’ve been on.
First off the company contacts you and basically sets up everything for you. You get this cute little package (I’ve shown it in a previous post) that comes with an abundance of information, a needle dispenser to throw your used ones in, a book to keep track of your treatment, and a travel kit with ice packs included! Then you get set up with a case manager who goes through questions and sets you up with an IV clinic to learn how to take the injection. You get a choice of doing the syringe or the pen. From what I’ve heard the syringe hurts less, but I hate needles and refuse to inject myself- so I chose the pen.
At the IV clinic you are partnered with a nurse. She goes through in details everything there is to know about the drug. So if you have any questions or fears research ahead of time and ask then. There is no such thing as an irrational question. You have the right to know what you are putting in your body and what to look out for! The overwhelming part for me was differentiating what a side effects were from the drug itself and what was from the disease. I was already experiencing a lot of side effects from the disease that would be considered abnormal on the drug so it’s just about listening to your body at that point. Once you go through all that and have signed that you understand what you are putting in your body, you do the training!
You always do 4 needles on your first day of treatment. It seems like a lot, because it is a lot! The nurse did the first one for me on my stomach. Then they walk through with you doing it on yourself. Once you can show the nurse that you can do it on your own (at least 2 out of the 4) and you stay 30 minutes to monitor for any allergy signs, you are on your way and ready to start doing it at home!
Again the drug company does everything for you. You just have to call in to let them know you will be needing a supply and they drop it off at your choice of pharmacy.
Now please remember I live in Canada, so I’m not sure how the company varies from country to country. But here because I was doing my injections weekly, I was considered a compassionate case, meaning the company itself covered the cost of my drugs. I would literally just have to go to my pharmacy and pick them up. I would always have to sign a document stating I picked them up because it was a lot of money and I don’t think the pharmacist wanted to be held liable if it got lost or was taken by someone else.
The injection itself does burn a bit. It’s not that it ever hurt any less, I think you just accept that its a temporary pain for a long term goal. I would often swear and it was different each time. Sometimes I would nail it, other times I bled like a baby or I bruised myself a couple of times too. Always make sure to change the location each time! It’s to prevent a potential build up in your fat.
I chose to do my treatments on a Sunday because it’s the one day a week that was most predictable for me. I usually didn’t have plans that day so if I needed to nap the day away, I could. Usually the injection site would be sore for a couple hours after. Sweat pants were my BFF’s those days. But side effect wise, I really lucked out. Aside from being tired, I didn’t have side effects. Most of my side effects I experienced was actually from my disease not the drug. I’ve only been on prednisone for 2 weeks and I’m already having more side effects on this than I did on the 4 months of Humira.
For sure your immune system is a bit weaker. I did find I had a perpetual runny nose and the occasional sore throat, but again I’ve been on prednsione for 2 weeks now and already have an ear infection again and potentially could be getting a bladder infection. Sooooooooo I would have taken Humira.
On top of my doctor doing routine check ups with me during my treatment, Humira also followed up with me. They did a one month check up and after that every 3 months complete a check in with you. They ask general questions, check in on your progress and symptoms and then follow up with anything else you might need from them. They were absolutely amazing when it came to making sure I was taken care of and really put my mind at ease knowing there was always someone I could reach out to if I had any concerns. And they work so fast! I asked for some extra ice packs since my mom accidentally gave mine away to a family member (and their specifically designed for the travel kits) and they send me a whole new travel kit and a travel letter within 2 business days of me calling.
So yes, I’m super bummed I stopped responding to Humira, because of all my treatment plans I’ve been on so far it really has been the best one I’ve experienced. This may be different for everyone!
The important thing to remember is to just be informed. Know your options, know what you are getting into, and ask questions when you don’t. It’s all a scary process and you can’t help but feel helpless and blind to everything, but take that time to get to know what you can!
I am more than happy to answer anyone’s questions regarding Humira, but remember it will be based on my experience so it could be different for you. Best of luck to anyone who is embarking on that next step!