I write this on an injection day of all days, why because I want to share my journey with you all. Oh the joys of injections…. This is not my favorite thing to do for sure. I have been through two different types of injections so far. Humira was my first biologic and it worked to help reduce the inflammation but it also gave me some pretty unwanted side effects. With that being said, I wanted to tell you about my journey with the biologics I have tried so far. Each one has had a different experience, I wont go into too much detail with everything that happened with Humira but I will tell you a bit about it and my side effects that I experienced while on it.
While it did some good Humira, also had the ability to render me useless for about 24-48 hours creating what some refer to as a Humira hang over. The exhaustion was terrible, the swelling in the site was also starting to get worse with every injection no matter where it was placed. I switched my injection sites often, from the legs to the stomach and back again as needed. But still with each injection I was developing rashes, and bruising. It was at this point that my Rheumatologist decided it was probably best for me to switch over to the medication they initially wanted me on first. So we appealed to the insurance company, jumped through their hoops and got it approved.
Man, the loading dosage was something else, and the switch from an auto injection pen on Humira to preloaded syringes with Cimzia was also drastically different.
I started it back in April I will share with you my thoughts that I had posted with my family on my personal page, this is as I am preparing myself to fully make the switch from one med to the other. Reading the information provided, and trying to deal with everything all at once. I also knew that with this switch my husband would no longer be able to help me when I needed it. He has a fear of needles and with the syringe it became too much for him. This was something I was facing alone.
“Today is giving me some anxiety, the Cimzia will be here today. I have been watching several training videos and took the training course for it but I am not overly confident in my ability to inject myself. This is not an auto injector but a prefilled syringe. With this we have “Loading dosages” unlike Humira, so for the script I am taking its 6 shots in one month- Then 2 shots once a month after that. Man I wish they had the autoinjector available in the US. * laughs nervously*”
I think I cried several times after we made the decision to switch it over, I was beyond scared. This was another turn in my journey and I was not sure I could do it alone. It was daunting, I was nervous, anxious, and uncertain; none of which is good which your own body cannot handle its stress hormones any more. I tried to remain calm and waited for the loading dosages to come. When they did, I opened them up, read the information… Watched the training videos. Cried some more…. And finally I grabbed my syringes and started. My husband tired to watch the first one but it was too much for him, he had to leave the room. Then two weeks later I had to do the second round of two, this time I made sure to be in a separate room, where there was less noise and where it would not bother anyone else. I cried again, feeling very alone and still struggling to make sure I was getting it all in.
So how has the injection process been so far? How has the switch been going? Well I have for sure had some ups and downs with it.
I noticed if I went slower, while it took more time, it hurt less, especially if the solution was not fully room temp yet. I started making notes to myself on how to improve each one, what worked, what did not, where to poke myself, where not to. For me this is not one I can do by myself in the stomach at all, my nerves are TOO awake in that area for me to do it with a syringe. I have to do it in my thighs, but the good news is that despite an occasional bruise, there have been no rashes, no welts that are discolored & red, or hives that follow after the Cimzia injections.
Sometimes my injections go well… other times I hurt myself. There is 50/50 shot that sometimes one will hurt really bad and the other one goes well. This is when doing two shots once a month. You see sometimes my nerves are in hyperdrive with Fibro, it feels like every single nerve ending is lit up, electrified or even just plainly on fire. It can be hard to wear certain types of clothing, allow people to touch me, stand in the shower, or even just be at peace in my own skin when this happens.
This can make giving myself an injection difficult, where as other times my nerves seem over used and somewhat dead… I never really know which state they seem to be in, especially in my legs. One has massive nerve damage and the other is a 50/50 split of being awake and dead at the same time, this is largely due to the injuries and issues with my back. ANY WAY. It was getting a bit overwhelming sometimes on my injection nights, having to do the two shots at one time, and I was having some progress. However, I was also noticing that there was a large gap and some decline in the benefits of the medication. Especially if my cycle started in the time in between injections. The positive effects were lasting 2-3 weeks with the double injection, once a month. Then there would be a week to 2 weeks of my body aching, hives popping back up and feeling miserable.
I had a follow up with my Rhuemy to talk about how everything was going with the switch, and this is where we decided it would be best to give it a go biweekly like I had done with Humria.
This was my latest update “Doc update: Last labs looked good- Kidneys are doing AMAZING but today was time to rerun all the panels. SO 13 vials of blood it was. We are upping my meloxicam and switching my injections to one injection every two weeks instead of two 1 time a month. We are looking at possibly adding in something for the muscle fluttering. All and all good visit I gotta say though, that much blood work at one time makes me worn out.”
And we got the results in, this lab round was even better than the last , the inflammation has gone down into the single digits. FINALLY! What does that mean? Well it means that this medication, the diet change, everything that we are doing is working! Its beyond exciting for me, I am slowly starting to feel like myself again. The exhaustion is there but not as bad as it once was, I do not feel the need to constantly lie down or nap ALL the time any more. I can complete a full day and make it into the evening, like normal.
Granted that does not mean I am not tired, I am always in that permanent state of tiredness, but it is manageable now. I am not randomly falling asleep at my desk or trying to fall asleep at the wheel while driving…. YES, that almost happened a few times while on Humira and it was of great concern for me. All and all for the time being this seems to be the right thing for me, the right switch, and the right frequency. But I also know in the back of my mind that my body can change that at any time, I cannot let that be my focus. Instead I know that for now at least I need to be thankful for the positives & I am!
Do I have any suggestions for reducing the pain of a syringe injection?
Actually I do! Sometimes it is all about getting your angle right, too straight and you will hit your muscle, which is very painful. This can also happen if the skin is to tight and not pinched up. So make sure you pinch you skin, preferably in an area that has some fat to it. Like your thigh or your belly.
If you cannot do it yourself that is okay, most of the doctor’s who prescribe this medication or medications like that will offer assisted injections, either through their office or through a nurse. The brand name injections for biologic medications also offer their own nurses to help with injection processes and education.
Another helpful tip is to allow your medication to get to room temperature before injection. Humira was about 35 mins or more depending on the actual temp in the house. While Cimiza, at least for me, has to sit out at least 1 hour + to reduce the pain, always make sure that you follow the injection instructions, as guided by your medical professional and the information provided by them or the nurses. As I always state, I am not a medical professional nor do I claim to be one, I am simply providing information about my own personal experiences and what has worked for me. If you have any questions about your own care, your own injections or even reactions to medications, PLEASE reach out to your provider as soon as possible.
There is a lot of training material that is out there to help you, check the maker’s websites for the medication, they usually have pamphlets you can request, print out, or have them mailed out to you. You can also find other’s like you and myself, on YouTube, who do instructional videos for educational purposes, however… I do suggest watching the medication provider’s video instructions first.
There are many of us out there who have autoimmune disorders, who have bodies that refuse to work as they should and need medication just to feel like a semi normal human being. You are not alone. I have recently been joining forums and groups to connect with others like myself, who are going through not only one autoimmune issue but several, compound diagnoses. It helps to be able to talk to others who understand. It helps to get your voice out there, to be heard, and to be able to listen to others as well. I will list some of the forums and groups I have found on my journey and maybe they can help someone else too.
Autoimmune Disease Support Group
Women with Autoimmune Dieases
There are many more that are out there, most are disease specific, I thought that these would be the most helpful to start. If you need more information about your disorders, autoimmune diseases, or simply just more resources on support, please do not hesitate to reach out.
I wish you all the best in everything that you do, and I am always here to lend an ear should you need to talk. You are not alone my lovelies! There are many out there like you and like me.
Much love and many blessings,