Biologics are just what they sound like. They are proteins and other biologic materials that are injected or given by IV infusions. They are all new drugs and I am apart of the first wave of guinea pigs to see what happens both short term and long term after using the medication. As proprietary information we as patients don’t even know exactly what it is that is being injected. Scary huh?
The biologic medications for AS are called anti-tnf drugs. Researchers have found that TNF or tumor necrosis factor play a role in causing AS. The anti-tnf drugs go to T Cells and bind to the tnf receptors making them useless. Then it is up to our kidneys and livers to dump them out of our system.
Biologics are very useful in really breaking up the cycle of AS. By binding to the TNF it stops the immune cascade signaling that says “hey we need to attack” and it stops the T Cells from from attacking the joints and eyes of the AS patient. So when you take biologics that work for you experience less fatigue, fever, pain, swelling and iritis.
Unfortunately each biologic medication only work for about 20%-45% of AS patients and come with their own set of risks. TNF is a very useful part of your immune system. It stops tumors and cancers from forming, is essential in stopping fungal infections, lung infections and is essential for people with hepatitis.
In order to qualify to take biologic medications you have to do blood tests that show you do not have hepatitis A,B or C and have a Tuberculosis Skin Test or TB test that shows negative. If you have one of those conditions and take a biologic you will potentially die.
So after jumping through the insurance and testing hoops I tried Humira first. Let’s take a step back and recognize the fact that at the time I was a TREMENDOUS NEEDLE WEENIE!!! I had to listen to music and lay down in order to have any blood tests done and would be so light-headed I had to stay laying down for 15-20 minutes. Humira had to be self injected subcutaneously every two weeks. That was a problem.
My first shot of Humira was given in the doctors office to make sure I wouldn’t have an allergic reaction and so they could show me how to prepare and care for the medication. Biologics can easily be destroyed in 20 minutes if not kept at the right temperature. I knew I was in trouble when the patient kit they gave you included an ice pack that was “recommended to be placed on the injection area for 20 minutes prior to injection to reduce pain and recommended to be kept on the injection site for 20-40 minutes after the injection to reduce pain.
Humira can only be describe as molten lava with the pain of 100 beestings at once. I couldn’t help but yell out during the injection which only frazzled the nurse more bc she was in training and this was her first time giving a patient a Humira injection. The seasoned nurse that was helping her gave me quite a dirty look. So I asked her, “are they always going to hurt that bad?”
Looking down her nose at me she replied, “none of the other patients seem to have a problem with it.” Oh great…not only am I a needle weenie I am a wussy too.
This experience was the start of Warrior Willpower. That night I went home and hit the internet…hard. Surely I wasn’t the ONLY one that thought it hurt. We will come back to this though after I finish the technical stuff.
So Humira has a loading dose which means you have to take more to start and then go to the “maintence dose”. So you take it once a week for two weeks and then every two weeks. The injection areas are your inner thigh or your stomach. I choose the thigh bc stomach injections just put my queasiness through the roof. It comes as an auto-injection pen which you press hard into your thigh and then push the button. The needle clicks down and a plunger is released injecting the medication into your body for about 15-20 seconds.
I simply could NOT do this myself. I would spend about an hour pumping myself up before taking it out of the fridge and then it has to cool for 30 minutes. During this time I would lay down on the couch with a pillow over my head listening to my favorite singer/songwriter music. I had a playlist called injection just for the occasion. Then Chad would get the injection when it was time and give it to me. It was very unnerving for all of us. It required mental strength later called Warrior Willpower for all of us to get through it. It was very hard on Chad to inject me knowing it caused so much pain. It was hard on me to realize that this was now my life. Injections make it much more real than just swallowing pills.
This was also about 7 months after my diagnosis and I was entering the anger stage of grief. There are 5 steps of grieving: 1. Denial and isolation 2. Anger 3. Bargaining 4. Depression and 5. Acceptance. When I was diagnosed, the life I had planned died. My future plans, goals and dreams were not going to happen in their entirety. The future plans, goals and dreams Chad and I had together were not going to happen in their entirety and that is really hard. I have called it a living death and wrote an article about it for my FB support group and I was astounded by the response. It reached the core of so many AS sufferers. More about that later.
So I continued Humira for 3 months without any change in my disease. I didn’t have any notable side effects other than injection site bruising. My blood inflammation levels were high as ever and it just didn’t seem to work. So my doctor decided I should try Remicade.
Remicade is also an anti-tnf but is made in a different way than Humira. How I don’t know bc pharma won’t let us know. It is given by IV infusion over 6 hours. It also has a loading dose, meaning when you start you get the infusion once and then two weeks later and then every four weeks after that.
There are side effects during the infusion and then side effects after infusion. During infusion patients experience itchiness and headache. Before the IV is started the nurse gives you tylenol and a large dose of benadryl. They start the dose low and then double it every hour until you are done. I did really well for the first 3 hours and then I started itching and having a headache. They had to slow it down so my first infusion lasted 8 hours. Very boring bc the last half I had to spend in quiet with no lights starting at the clock.
Then next morning I was frickin’ SUPERWOMAN. I had more energy than I had EVER felt in my life. I was dancing, singing, playing with Christopher and almost in tears bc I felt so good and was flooding with hope for the first time since starting this whole process.
It all came crashing down the night after, 24 hours after infusion. I started breaking out in hives. Everywhere. I had welts from head to toe and everything in-between. I had hives between my toes, on my lips, in my hair…everywhere. It was the weekend so I called the doctor and she told me to take benadryl and come see her monday. She was shocked to see my reaction and prescribed a massive dose of predinsone to try to get rid of the hives.
She told me that what I was experiencing was a rejection reaction not an allergic reaction. Much like when an organ transplant patient rejects the organ my body was rejecting the proteins in the medication which she then told me was formed from rodent DNA. That’s right the infusion was made from rat DNA and my body didn’t recognize it and set off a huge rejection reaction.
It was crushing bc she also told me that if I continued with the medication I could have an even worse reaction resulting in anaphylaxis. So what would you do? I told her that I needed to try it again bc I had never felt so good in my life and it was worth it if my body could get over it by becoming desensitized.
So two weeks later I did a second infusion. Exact same thing happened. I was Superwoman for about 12 hours and then I broke out into even WORSE hives. So bad that the doctor took pictures of my body to send to the pharmaceutical company with her accompanying adverse event report.
I sank into depression after this. I felt beat up and let down. I only had one more drug to try, Enbrel, and that would be that. No more options. I was tired of not only feeling bad from the disease but even worse on top of that bc of all the side effects I had been going through. So I stopped taking all the meds except for NSAIDs and added an antidepressant to my prescription list.
I built up the nerve to try again about 6 months later with the help of support groups and my own research into AS and the medications. It was a crash course in learning to be your own advocate and not just blindly going along with doctor’s orders.
Enbrel is also an anti-tnf that is injected subcutanelously once or twice a week. After consulting with my pharmacist and primary doctor we determined based on my past immunization record that I was probably reacting to the preservatives in Humira. Enbrel came in a form that you mixed with saline before you inject it that is preservative free. This preservative free form came in the traditional needle and syringe format. What I found was that the auto-inject pens really slam the needle and medication into you. With a needle and syringe you control how hard and fast the needle goes in and you control how fast the medication goes into your body. This was a huge win for me. It created a pain-free injection hooray! Of course the needle pinches but there was zero pain from the medication entering.
Within days I started to feel better. Within a week my energy started coming back. It wasn’t the same Superwoman energy of Remicade but it was a huge improvement. I started looking forward to the shots and even overcame my fear and started injecting it myself.
The only side effect that was noticeable was that I would get colds more often and they would last longer. Overall it was a huge win. My joint stiffness started going away and my flares were not as strong nor did they last as long. I stopped getting iritis and life was good. For awhile.
After 2 1/2 years I started noticing that the Enbrel wasn’t working as well. I however thought that it was just my disease progressing and that the disease as a whole was getting worse. The pain, swelling, stiffness, iritis and flares were returning and lasting longer and longer. At about the 3 year make I started breaking out into a rash after the injections that looked similar to a prickly heat rash. I would get little pimple like hives with clear fluid in them.
Concerned I went to the doctor. That’s when she laid a tough reality I hadn’t known about at my feet. Bc the medication was a biologic you body starts to learn it just like it learns about colds, bacteria and viruses. My T Cells had began to memorize the structure of the proteins and started making anti-bodies to destroy the medication. The period of time when it wasn’t working as well is when my body had begun to destroy it and the hives told us that it had mastered the medication and was giving off signals for allergic reaction now. I wouldn’t be able to use Enbrel anymore.
Simponi is very similar to Enbrel and is the latest drug approved for AS. It became available a year after I had to stop taking Enbrel. My doctor cautioned me that it was highly likely that I had become sensitized to all anti-tnf drugs and that taking it would have the same results as Enbrel. But you gotta try right?
Simponi is a subcutaneous injection that you take once a month. The challenge is that if I had an allergic reaction I could be miserable for a month. So think about that one for a moment. In agreeing to try the drug I was also agreeing to potentially just take a month out of my life to be in misery on top of the present misery of AS. I thought about it for a long time. There is never a good time to just check out for a month. But if it worked…I could be feeling great again. It’s a tough tough decision.
So after much thought I gave it a go. Within hours I had a rash. My doctor had already prescribed a base level amount of prednisone, 5mg, to take with the injection to try to head off a reaction and a second prescription of 60mg of prednisone to take if I got into trouble. So I started taking the massive dose of prednisone. The rash lasted two weeks and this last try ended my relationship with all anti-TNF drugs.
So that is it. All the drugs invented to try to stop AS have failed and until researchers come up with a new one all I can do is take NSAIDs and pain medication.
I did try Orencia about a year ago which is label for RA which ended in a financial nightmare. The insurance company approved me to take it on an experimental basis and then after two infusions decided that they weren’t going to approve it resulting in a $12,000.00 hospital bill. My doctor appealed the decision twice and was denied twice. The medication itself put me immediately into one of the worse flares of my life on top of it.