Biologics can be scary Day 3 of RABlog
This is day 3 of RABlog week, and todays prompt is:
Biologics can be scary – What did you think the first time you Googled your biologic medication? What advice would you give a person just diagnosed when it comes to biologic medications? Give your readers the scoop on biologics.
I have used a total of seven biologic medications in my 16 years with RA. My first one was effective for more than five years, and the shortest less than 90 days. They are powerful medications that have given me and countless others new life.
They are also very expensive medications that alter our autoimmune systems to suppress the terrible effects of RA. They go by many names that the average reader who watches Television will readily recognize: Humira, Enbrel, Rituxan, and Orencia are some of the more recognizable product names.
I use Rituxan because it was the last biologic medication available to me three years ago when I needed to change. It is a medication with a list of possible side effects that range from hives to a fatal brain infection. I have not experienced these side effects.
Why do I use a biologic medication?
The truth is, I do not have a choice if I wish to have a mostly average life. In the intervening time between my last biologic medication and Rituxan, I lost much of my ability to walk, sleep, or participate in my world. Yes, I understand the extreme risk of using them, but I also understand the terrible consequences of not doing so.
Without these medications, I could not ride a bicycle, play with my grandchildren or enjoy life with my wife. These are things that people were unable to do just 20 years ago before the widespread use of these medications.
Even using these medications we are not cured of RA. There is no cure for RA; there is only treatment or non-treatment. I chose treatment so I can participate in my life. I choose treatment so I can fight RA.
I am well aware of the risks of using these medications, my doctors and I discuss these risks often. But we also discuss the opportunities that come about because I use them. It is, of course, a personal decision to use them or not. I understand when people talk to me and say I could never use Rituxan. I was that person a few years ago.
The first time I Googled Rituxan, I was shocked at the warnings. I simply could not believe that medication which had so many potential bad side effects was on the market. I told Sheryl, I will never use this medication. Sheryl read the side effects and agreed it is too big of a risk. We have to hope for something else. So I tried going it alone with no biologic for three months. I was miserable.
So, I chose to use Rituxan despite its warnings. I saw little choice in the matter. To me not playing with the grandchildren or enjoying life with my wife was too large of a price to pay for avoiding the risk of using the medication.
Administration
I use Rituxan at the maximum dose available (two infusions every four months). It is not a pleasant medication to have administered. Each infusion is 5-7 hours long, and each one causes dry heaves unless I am properly medicated (meaning unless I am sleeping). My blood sugar soars after the infusion because each one includes steroids as part of the treatment. Post infusion my blood sugar hovers in the 400 – 500 range for one to two days despite massive doses of insulin (usually 3x Basal and 2x Sensitivity). This can mean as much as 160-200u per day. Each time I continue to use my pump, but I also use supplemental injections to stop potential pump site infection.
Panacea?
These medications are not ideal. All I know is that if these medications help me stay in the fight, perhaps my grandchildren might look back someday and say thank you Poppa, the fight was worth it. After all, what better justification is there for using such powerful medications? None I can think of.
-30-
rick
Take away for September 28, 2016
- Biologic medications can be scary
- Biologics are not a panacea
- Biologic medications make life possible for me
Thank you my friend for this informative and hopeful look at your journey. I always am amazed how different our stories are but how much we can learn and share with each other. You are always a constant source of inspiration.
Trish, such kind words. Our journeys are so different except for one thing. All of them demonstrate how much effort we put into the outcome.
Yes, while these drugs may sound scary at the onset, I am glad that I finally took the plunge. It gave me my life back and am sure, has had a lot with my being able to continue working full-time.
I was in pretty bad shape. I could hardly walk and even thinking of getting out of a chair was pure agony, as was actually getting out of the chair.
Our quality of life is so important as patients. Sometimes, we have to make judgment calls, that are risky, but what choice do we have?
Brenda, I think we come to these decisions personally, in very different ways. No way is better or worse than others.
I was in a meeting once of people with children who have type 1 diabetes. One of the ideas at the time was to give children at risk for diabetes an immune suppressant to stop the loss of islets. One father stood up and boldly announced he had a second child and he volunteered to start his child on one of these medications immediately as a test to see if it prevented diabetes.
I thought how uninformed he was. I think if he read the warning label on these medications he would be a lot less anxious to start his child on the medications. It seems so easy until you walk the path
I have learnt not to google any medications I am put on….the side effects always sound scary. & from what I have learnt you normally do get some side effects, but usually just mild ones.
You have a great reason to continue on with the meds. Your family will appreciate & cherish the time they spend with you because of it.
One of our bloggers this week said she refuses to get advice from Doctor Google. I think that is such great advice. It is true all of those things can happen, but so few do it is difficult to imagine why we look into it.