This past week I’ve pretty much had the same question asked by several people.
“Do you have any tips that you could provide to someone who is new to biologic medications?”
Now, I don’t know if its the fact I had my infusion last week and posted this picture on Instagram or what, but I thought I’d give you my personal experience.
In July 2000, I started on my second biologic medication – Remicade. Enbrel didn’t work for me the way I had hoped, mostly because I couldn’t stay on it long enough without getting sick. In order to get over being sick, I would skip my Enbrel shot. Eventually it got to a point where I was sick for an entire month. I HATED IT!! I was in so much pain. Especially at the age of 16. So, Dr. Rheumy suggested Remicade but informed me that extra precautions were required since its administered by IV. I couldn’t get off the medication to get over being ill. I would have to take better care of myself, be wary of all germs, and take it easy.
Take it easy? At 16??? HAHAHAHAHA! No, but seriously. 12 years ago there were only two biologic medications that were approved for arthritis and I already tried one of them. The second and last option was Remicade and at the time, it wasn’t even approved for my type of arthritis – ankylosing spondylitis. So, if I didn’t take good care of myself – that was it. No other options. DONE!
So, what did I do? I educated myself about it and then became paranoid about it. I had no other choice.
I learned that biologic medications deplete your immune system. What does that mean? Well, in Peachy terms – IT WIPES OUT YOUR ENTIRE SYSTEM!! You basically have the same immune system as a newborn. Yup, you read that right. NEWBORN! Same immune system as a newborn.
So, you are starting from scratch. Your body doesn’t recognize the common cold, but instead thinks its the flu. Your body doesn’t recognize the flu and thinks its losing an arm. Well, I digress, but you get the picture.
In order to survive this new immune system state and quiet frankly HIGH SCHOOL with a newborn-like immune system, I had to build it back up. I remember at that age when it took FOREVER! But in reality, it took about a year. Once it was built, I barely had any problems after the age of 17. However, when I went to college, I had to start all over again. New people, new bugs, new system. So, keep that in mind as you’re evaluating all of your environments. Treat each new environment as a new germ fest.
But there is hope! Once I recognized the pattern that new people have different habits but treat everyone as if they have the same bad habit, I quickly built my immune system tolerance to each new environment I encountered. The best news – I’ve been less sick than when I was off the biologic medication.
So, how did I do it? Here are my 7 lucky tips for surviving a new environment:
1) Purell is your new best friend. Take it everywhere you go. Don’t be afraid to share it with your friends, family, and even strangers your sitting next too. They usually appreciate a good squirt into the hands as much as you do.
2) Clorox wipes are the BEST! I wipe down everything before I touch it. I remember in college carrying around a few in a Ziploc baggy (because the entire container was silly) and wiping down my desk, pens, pencils, calculator, notebook, and textbooks. I looked silly, but I was grateful I did. Why? Because everyone wants to borrow a pen, pencil, highlighter, calculator, piece of paper from you at least one time in your life. Now that I’m not in school, I’ll wipe items down like grocery carts, clothes hangers, and trash can lids.
3) Wash your hands properly and frequently. I wash my hands all the time and after working in a hospital as an intern, I quickly learned how. Here’s how if your facilities are not automatic:
- a) Take a paper towel and turn on the faucet. Remember: hot water kills germs.
- b) Take the same paper towel you used and apply it on the soap handle dispenser to administer soap in your hands.
- c) Slightly dampen your hands. Next, rub the soap all over your hands, including between your fingers and under the nails. Soap them as long as it takes you to sing: THE HAPPY BIRTHDAY SONG! No joke, sing it. You can sing it out loud or to yourself. I don’t mind. 🙂
- d) Then rinse thoroughly.
- e) Once you are finished, leave the faucet on (water running) and go over to the paper towel station and dry off your hands.
- f) When you are done, take a new paper towel and turn off the faucet.
- g) DONE.
It may seem like a light of steps, but its amazing to me how many people don’t wash their hands properly. I’m sorry, but I don’t trust anyone to actually wash their hands properly. There’s a reason why surgeons aren’t allowed to touch anything after they wash their hands. They wash them that well!
4) Paper Towels. Remember how much you used paper towels in the steps above? Well, I use them on every public thing I may have to touch. For example, open public doors (especially restroom doors), keyboard/mouse in a computer lab or at work. I also use it on weird things like library books or grocery carts. Any public domain where people are allowed to touch something, I touch with a paper towel.
5) Vitamins, Minerals, and Supplements. Since the medication wipes out your entire immune system, I noticed mine didn’t absorb vitamins, minerals and supplements like they used too. I used to take 100% Vitamin C and it would be enough. But now, I double it, but I got doctor approval first. I doubled every single vitamin, supplement, and most minerals since my body isn’t “normal”. I’m required to take extra since my base level is so low, normal people can’t even see it. So, if you’re seriously thinking your not getting enough nutrition through what you eat, talk to your doctor. Have them run blood tests (mine do every month!) and see where your levels are at. My favorite vitamin and mineral packet is Nature’s Code: Women under 5o Vitamin Packet. All the vitamins and minerals I need in a cute little package that I can grab and go. My mom, dad, and sister also use this brand as well – so its great for all ages. For supplements I sometimes use Echinacea in pill/tea form and immune booster pills (especially when I’m traveling, feeling ill, or its fall/winter). Again, I received approval from my doctors on every vitamin, mineral, and supplement I take.
6) Neti-pot. Buy yourself a Neti-pot. The real deal, where it has a spout and you have to bend over so the water comes out on the other side. I wish I had paid attention to the advice my brother gave me 10 years ago. Oh well! But now, since December of last year I wised up and I LOVE IT! Personally, I use mine in the shower because its private with little to no clean-up. I use it more when I feel a cold coming on or my sinuses are acting up. Its weird and ridiculous looking, but really isn’t uncomfortable to use and works GREAT.
7) Don’t share your stuff. This seems a little harsh, especially as we were graded on how well we shared with others in school, but again, they all have germs! But seriously, stop sharing your drink with your kid. Stop sharing thumb drives with your significant other. Stop sharing that pen with your co-worker. STOP SHARING! People have germs, and those germs come from other people. For example: You shared your drink with your kid, but your kid was sneezed on by one of his classmates, whose mother was sick last week. Your kid isn’t going to remember this at the time their asking you for a sip of your drink. But the ultimate consequence because your immune system is so low, chances are, you will contract that cold your kid’s classmate’s mother had. If your kid isn’t going to remember, neither is your significant other, roommate, co-worker, or pet. STOP SHARING!
AND those ladies and gentlemen are my 7 lucky tips. 🙂
Some may seem extreme, like not sharing with others, or using paper towels to turn on faucets, but remember you can only control YOU. If you control the situation and circumstance as much as possible, you’re only helping yourself in the end. If you help yourself, you’re truly helping others around you too – because you’re being the best you.
So, what gives me the credibility to say these things? Well, back in July, I celebrated my 12th year being on the same biologic medication with my 91st infusion. I rarely get sick. If I’m around others who are sick, I repeat these steps consistently and constantly. Now, I’m not saying it will help your medication work better to fight your arthritis, but it will allow your body the best fighting chance it has.
If you’re on a medication that depletes your immune system and have tips/tricks that work, I’d love to know. Let’s keep this conversation going because the more we share, the better off we all are. You can either leave a message below or contact me by any Social Media sites out there (my list is below).