Tale of a Biologic: 17 Years of Injections...
Hello my fellow readers! It's Trevor here once again, to share our monthly tale. This one is going to be extra special, folks!
Yesterday, which was Friday the 13th, do we have anyone superstitious reading this? BOL This day and date, 17 years ago, turned out to be a day that Brenda was offered a life changing experience. Of special note, it was also Good Friday that year in 2001.
As you know, Brenda has lived with rheumatoid arthritis (RA) for almost 27 years. Almost 10 years after living with it, she had a conversation with her PCP, as she was not seeing a rheumatologist at the time. Their attitude in the beginning, was that Brenda was going to get worse and her disease would progress. Just what you want to hear, right? She couldn't deal with that negative thinking, so she was at this time, only going to her PCP.
Back to our story. She told him that she was ready to consider starting a biologic. In this case, it would be the first one, which was FDA approved in 1998. Enbrel also known as entanercept, showed a lot of promise with those living with RA. Brenda had tried so many other classes of medications, during those first 10 years of living with RA. She never gave up and kept hoping that something would come along.
Brenda did a lot of researching on her computer. When she was diagnosed in 1991, her only resource was the public library and one publication; Arthritis Today. She finally owned a personal computer and could now do her own research.
So when she decided that she wanted to give this biologic a try, she did all that she had to do. One thing was to go back to her rheumatologist, who didn't feel that she would get the opportunity to try this medication anytime soon, so he wrote her a prescription for another. She never filled it. She didn't have to as this biologic became available soon after this visit. In the meantime, her PCP continued to keep her comfortable with another medication, where she had vivid dreams. Weird, right? It's been known to happen.
So getting back to this day; April 13, 2001, she received a phone call asking her, if she was ready to start taking this biologic. I can't even imagine, how exciting this must have been for Brenda. Anyway, a few glitches with the insurance company not wanting to cover it, that was quickly taken care of.
By the following Friday, April 20, 2001, Brenda was sitting in the doctor's office receiving her first injection. She had to remain there after, to make sure that everything would be okay. She would then have to return for another injection, within 72 to 96 hours or 3½ to 4 days. In the beginning of this injection journey, you were only allowed to have so much, that being 25 mg. so that is the reason it had to be spread out.
Brenda would have to learn how to draw up her own injections, as the goal was to be able to do these at home. No Autoinjectors back then. She had to use a tray to put the bottle with the medicine on one side and the syringe on the other. Do any other users remember that pink cap that you had to pull off?
Brenda's fingers had become damaged by this time, that her only way to administer these, was with the tray. She would take the bottle and fill the syringe with the medicine. Then, she would have to pinch her skin, because these injections were subcutaneous, meaning below the skin's surface. She had her choice of the upper arm, upper thigh or her abdomen.
As time went on the FDA approved 50 mg. but not in the same site. That meant drawing up 2 separate injections. This whole process took about 30 minutes, because you had to set it out for at least 20 minutes, before you could even start this. That's a lot of time, so she ended up usually doing it after work. Her mother who has since passed, would help with the upper arms. She also wrote out the instructions, so that Brenda had them step by step. A lot was involved.
It has become so much easier, because the FDA finally approved 50 mg. in one site. Brenda now uses the SureClick Autoinjector, that she sets out at least 20 minutes before administering it. Now all she has to do is pull off the cover, find a site and hold it straight down and click the blue button. It takes about 15 seconds to hear another click, letting you know that it is done. With the syringe, she would have to make sure that the needle was at an angle. This is so much easier and quicker.
Before I go on, we want to pay tribute to the scientist who was responsible for discovering the molecule; the tumor necrosis factor (TNF), so that biologics could be manufactured. That man was Dr. Gale (Morrie) Granger, who sadly passed away recently. It was through a grant with the Arthritis National Research Foundation. Brenda will never be able to thank him enough, for this wonderful discovery that truly changed her life.
Brenda had a chance to share almost 6 years ago, during her work advocacy day with the Global Healthy Living Foundation aka CreakyJoints, when she worked with Seth Ginsberg, the President and Co-Founder. He took a chance on this North Dakota gal and it was beginning of many other opportunities to come.
Brenda had 4 meetings, did a local TV interview with NBC ND News: Living with RA right in her own apartment. Trevor here, even got to have his picture taken with Brenda, right before the interview. She also met with the Bismarck Tribune and did an interview. This whole day was centered around her taking a biologic, at that time for 11 years. The date; April 20, 2012. Brenda was given the chance to pick the date, so why not!
There is also a YouTube video centered around this whole experience. It's titled: Patient Advocate: This Could Be You! The interview with NBC ND News is also available on YouTube to watch.
The next year 2013; CreakyJoints came knocking at her door, with another opportunity. This again, was centered around her taking a biologic. This was basically biologics vs biosimilars, when they come into play. Brenda shared her story of taking a biologic. The bill to be put into place if passed, was that if you go into your pharmacy, was that the patient and their doctor, would have to be notified in a reasonable amount of time, which one they would be receiving. If it were the biologic or biosimilar. North Dakota did the right thing and it did pass. Of special note ND was one of the first 6 states to pass this special legislation. Many other states and Puerto Rico, have also had this law passed. Brenda is involved in some pretty serious work here, as an advocate.
Brenda testified on behalf of the Global Healthy Living Foundation with the 50-State Network, representing her state of ND. She made a difference that day along with Allen Todd, who also testified and shared his story of taking a biologic.
So you see, being able to share this has been a joy to my paws. Brenda is so grateful for research and scientists. She also has since joined with CreakyJoints: Patients Partners in Research.
We realize this has been a long tale, but it shows a road map of what the last 17 years have been like, taking a biologic. We wanted to give you the whole picture. Last December, Brenda administered her 1,000 injection. What a milestone! She has kept a diary since day one, that being a suggestion from a coworker. We want to leave you with some photos. Entries from the early days of administering this life changing medication.
Peace and Hope,
~T Man~
Yesterday, which was Friday the 13th, do we have anyone superstitious reading this? BOL This day and date, 17 years ago, turned out to be a day that Brenda was offered a life changing experience. Of special note, it was also Good Friday that year in 2001.
As you know, Brenda has lived with rheumatoid arthritis (RA) for almost 27 years. Almost 10 years after living with it, she had a conversation with her PCP, as she was not seeing a rheumatologist at the time. Their attitude in the beginning, was that Brenda was going to get worse and her disease would progress. Just what you want to hear, right? She couldn't deal with that negative thinking, so she was at this time, only going to her PCP.
Back to our story. She told him that she was ready to consider starting a biologic. In this case, it would be the first one, which was FDA approved in 1998. Enbrel also known as entanercept, showed a lot of promise with those living with RA. Brenda had tried so many other classes of medications, during those first 10 years of living with RA. She never gave up and kept hoping that something would come along.
Brenda did a lot of researching on her computer. When she was diagnosed in 1991, her only resource was the public library and one publication; Arthritis Today. She finally owned a personal computer and could now do her own research.
So when she decided that she wanted to give this biologic a try, she did all that she had to do. One thing was to go back to her rheumatologist, who didn't feel that she would get the opportunity to try this medication anytime soon, so he wrote her a prescription for another. She never filled it. She didn't have to as this biologic became available soon after this visit. In the meantime, her PCP continued to keep her comfortable with another medication, where she had vivid dreams. Weird, right? It's been known to happen.
So getting back to this day; April 13, 2001, she received a phone call asking her, if she was ready to start taking this biologic. I can't even imagine, how exciting this must have been for Brenda. Anyway, a few glitches with the insurance company not wanting to cover it, that was quickly taken care of.
By the following Friday, April 20, 2001, Brenda was sitting in the doctor's office receiving her first injection. She had to remain there after, to make sure that everything would be okay. She would then have to return for another injection, within 72 to 96 hours or 3½ to 4 days. In the beginning of this injection journey, you were only allowed to have so much, that being 25 mg. so that is the reason it had to be spread out.
Brenda would have to learn how to draw up her own injections, as the goal was to be able to do these at home. No Autoinjectors back then. She had to use a tray to put the bottle with the medicine on one side and the syringe on the other. Do any other users remember that pink cap that you had to pull off?
Brenda's fingers had become damaged by this time, that her only way to administer these, was with the tray. She would take the bottle and fill the syringe with the medicine. Then, she would have to pinch her skin, because these injections were subcutaneous, meaning below the skin's surface. She had her choice of the upper arm, upper thigh or her abdomen.
As time went on the FDA approved 50 mg. but not in the same site. That meant drawing up 2 separate injections. This whole process took about 30 minutes, because you had to set it out for at least 20 minutes, before you could even start this. That's a lot of time, so she ended up usually doing it after work. Her mother who has since passed, would help with the upper arms. She also wrote out the instructions, so that Brenda had them step by step. A lot was involved.
It has become so much easier, because the FDA finally approved 50 mg. in one site. Brenda now uses the SureClick Autoinjector, that she sets out at least 20 minutes before administering it. Now all she has to do is pull off the cover, find a site and hold it straight down and click the blue button. It takes about 15 seconds to hear another click, letting you know that it is done. With the syringe, she would have to make sure that the needle was at an angle. This is so much easier and quicker.
Before I go on, we want to pay tribute to the scientist who was responsible for discovering the molecule; the tumor necrosis factor (TNF), so that biologics could be manufactured. That man was Dr. Gale (Morrie) Granger, who sadly passed away recently. It was through a grant with the Arthritis National Research Foundation. Brenda will never be able to thank him enough, for this wonderful discovery that truly changed her life.
Brenda had a chance to share almost 6 years ago, during her work advocacy day with the Global Healthy Living Foundation aka CreakyJoints, when she worked with Seth Ginsberg, the President and Co-Founder. He took a chance on this North Dakota gal and it was beginning of many other opportunities to come.
Brenda had 4 meetings, did a local TV interview with NBC ND News: Living with RA right in her own apartment. Trevor here, even got to have his picture taken with Brenda, right before the interview. She also met with the Bismarck Tribune and did an interview. This whole day was centered around her taking a biologic, at that time for 11 years. The date; April 20, 2012. Brenda was given the chance to pick the date, so why not!
There is also a YouTube video centered around this whole experience. It's titled: Patient Advocate: This Could Be You! The interview with NBC ND News is also available on YouTube to watch.
The next year 2013; CreakyJoints came knocking at her door, with another opportunity. This again, was centered around her taking a biologic. This was basically biologics vs biosimilars, when they come into play. Brenda shared her story of taking a biologic. The bill to be put into place if passed, was that if you go into your pharmacy, was that the patient and their doctor, would have to be notified in a reasonable amount of time, which one they would be receiving. If it were the biologic or biosimilar. North Dakota did the right thing and it did pass. Of special note ND was one of the first 6 states to pass this special legislation. Many other states and Puerto Rico, have also had this law passed. Brenda is involved in some pretty serious work here, as an advocate.
Brenda testified on behalf of the Global Healthy Living Foundation with the 50-State Network, representing her state of ND. She made a difference that day along with Allen Todd, who also testified and shared his story of taking a biologic.
So you see, being able to share this has been a joy to my paws. Brenda is so grateful for research and scientists. She also has since joined with CreakyJoints: Patients Partners in Research.
We realize this has been a long tale, but it shows a road map of what the last 17 years have been like, taking a biologic. We wanted to give you the whole picture. Last December, Brenda administered her 1,000 injection. What a milestone! She has kept a diary since day one, that being a suggestion from a coworker. We want to leave you with some photos. Entries from the early days of administering this life changing medication.
Peace and Hope,
~T Man~
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| In Celebration of Brenda's 1,000 Injection |
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