I feel like a guinea pig when it comes to doctors giving me medications.
From the age of 12 I was diagnosed with Crohn’s disease and from there on I was thrown medication after medication to try and “fix” me.
I couldn’t swallow pills at that age so naturally I gave up and didn’t take the medication. This was not the smartest thing to do but I was fed up with the medications giving me zero results and making me feel no better than when I started.
I remember the doctor giving me a medication called Pentasa. They were these long green and blue capsules and they wanted me to take 8 capsules 4 times a day. Yeah that’s 32 pills on top of other medications I had. Long story short I was switched to a new drug in no time.
Eventually I graduated from taking pills to the more exciting stuff! Yeah so exciting it involved needles and IV’s. These were the infusion and shot forms of drugs offered for Crohn’s disease.
So, let’s start with Remicade.If you have read my past blogs I spoke about taking Remicade and it being my own form of a “miracle drug” (SEO Blog-Being positive). Remicade is a two-hour infusion you receive through an IV at an infusion center.
This was the drug that worked the best for me and didn’t take long to start working.
The one thing that I did discover when getting Remicade was that I’m allergic to Benadryl. The nurses at the infusion center give you a shot of Benadryl before giving you the infusion to prevent a reaction. But of course, when they gave it to me I stopped breathing and was immediately given a mask to help me breathe. Other than that horrible memory, Remicade worked wonders for me! This was the drug to give me my hope. No matter what you go through when switching medications, you need to remember that having hope and a positive mind towards the new drug will really help your experience and time on the drug better. I learned this the hard way by being very somewhat negative and pessimistic. After Remicade I knew from now on I needed to give each medication a chance!
The next drug is Stelara.This was the last drug I was on that worked for a solid 4-6 months before I started to get sick and flare up again.
Stelara is a shot that the pharmacy of your choice sends to your home and you give it to yourself.
My shot was given every 8 weeks and it wasn’t very painful. It came in a syringe and you could control how fast the medication went in. I was lucky and had my roommates give me the shot because I didn’t feel comfortable giving it to myself. It helps to take the shot out and have it sit in room temperature for 30 minutes as well as ice the area you decide to give your shot nt, so it becomes numb. The shot started working after around a month I believe, and I was healthy and symptom free. Then a couple months in, the drug started to wear off after 4 weeks. Shortly after my doctor decided to up my does to every 4 weeks. Everyone is different obviously with dosage, but I did find Stelara to be successful. The side effects I did notice were headaches toward the end. I noticed myself getting horrible headaches. Other than that, I don’t recall any significant side effects.
The final drug, the one I am currently taking, Cimzia.
I know since I have not been on it long enough I can’t share too much but I would like to share initially a little I have learned. This is because when I started taking it I really didn’t find too many discussion forms or websites that talk much about people’s experience with it. This is another shot that can be given at an infusion center or sent to your home. After getting my one Humira shot last month and having a horrible experience of pain and torture, yes Humira I would say is torture, my doctor suggested Cimzia. She said I could get a lidocaine shot then the actual shot. It has been successful and not a lot of pain at all! This past week I got shot 5 and 6 so I am done with the starter shots and now will be going once a month. Crossing my fingers it helps because this is the last and final drug I have to take.
One way that has made getting these shots, infusions, and many trips to the hospital better is taking my mom with me.
Do you bring anyone with you to doctor’s appointments or to get your medications?
If not, maybe consider bringing a friend or family member. Having the support of someone with me and there to hold my hand or keep me company really has helped me over the past few years. You don’t have to be alone in this disease and you are allowed to ask for help.
When you go to your next shot, or infusion, or appointment ask a friend or a family member to go then maybe have a cute lunch at a nearby café or take pictures like my mom and I like.
LA art picture after doctor apt. at Cedars Sinai
It is something that takes your mind off doctors and pain and makes your experience a little easier and fun!
Thank you so much for following my blog and feel free to comment and share anything you would like! What medications have been most successful for you and what medications have been not so successful? Share your stories and experiences in the comment section and have a wonderful week!