Twelve years ago Jody started getting unexplained pain, swelling and redness in her eyes after having her first child. Shortly after, she was diagnosed with Scleritis¹, a serious eye disease that is often associated with an underlying autoimmune disorder. Fast forward to today, Jody has started taking weekly injections to ease her symptoms. We sat down with Jody to hear about her first at home injection. 

 

Portal Instruments: Twelve years is a long time to be dealing with this type of pain. Can you give us a little more information about the journey which led to your diagnosis?

 

Jody:  First, I saw an ophthalmologist who diagnosed me with scleritis. He told me it was most likely caused by an autoimmune disease, such as Lupus or Rheumatoid Arthritis. To ease my symptoms at that time he prescribed me a steroid eye drop which would reduce the swelling and redness. In the meantime I was referred to an immunologist where I was tested for multiple autoimmune diseases. All of the tests came back negative. Of course with negative tests there was not much that could be done to conclude a diagnosis, so my doctor continued to see me every three months for years. Early in my treatment the steroid eye drops stopped working and as my symptoms worsened I was put on an oral steroid that I took as needed. This continued for ten years. 

 

Portal Instruments: What were your main symptoms during a flare up? 

 

Jody: I would get very bad pain in my eyes. It’s in both of my eyes but primarily my right eye. If I look left or right or up and down it would trigger a super painful feeling behind the eyeball itself. I would also get a headache and a pulsing feeling in the temple on the side of whichever eye was red. I could wake up in the morning, before even looking in the mirror, and know that my left eye or right eye was going to be red because I could feel the pain in the eyeball itself, almost like a fresh bruise. Eventually I was referred to a specialist who recommended a more aggressive treatment. I would take a 500 mg pill to ease my symptoms every day. It only took about two weeks before my stomach started rejecting this medication and I had to go back to taking my steroids. 

 

Portal Instruments: Tell me about when your doctor suggested you try an injectable medication?

 

Jody: About six weeks ago I went into Boston to see my specialist and at that time I was experiencing a very painful flare up. My doctor told me we could try a medication in the form of an injection. So, he prescribed me a three month supply of these injections and suggested I take them on Saturdays since I may need a day to recover. A bummer because it kind of ruins my weekend but luckily I haven’t had terrible side effects! 

 

Portal Instruments: What has your experience been so far with the needles? 

 

Jody: Horrible? I couldn’t even get the needles. I went to my pharmacy to pick up my prescription and it took about a week and a half to get the actual medication, which comes in a glass vial. The needles I still can’t get and it’s been a month now. Before I was supposed to take my first injection I drove back to the pharmacy to see if they had the prescription for my needles ready. They told me that since they are the same needles needed to administer the covid-19 vaccines, there is a shortage, even in the surrounding towns. I can’t even drive far away to pick up the correct needles. I asked the pharmacist if I could have just one needle so I could start my treatment. Since my prescription was for twelve, I thought they may be able to just fill part of the needle prescription. He poked around the pharmacy and was able to give me a needle twice the size and instructed me on how to draw 1 mL from the vial, the same way I would with the smaller needle. 

 

Portal Instruments: That’s scary for your first time injecting! Can you walk me through the injection day?

 

Jody: This past Saturday was the first time that I had to inject. When I was at the specialist in Boston I was given instructions on how to give myself the shot because I have never done that before. I was nervous. My husband was in the bathroom with me and asked, “Do you want me to do it?”. Of course I said no because I was instructed on how to inject but…Unfortunately with this other needle it was so much bigger, it killed. I actually had to try four times to get it into my stomach, it just didn’t go in… I grabbed a roll of skin on my stomach and I finally did it, but it hurt a lot. I still don’t think I did it right! The medicine itself didn’t even come out the way it was supposed to. I flipped the vial upside down to draw down the medication and it didn’t draw. We tried to hold it sideways until it came out, and eventually it did, but it had a big air bubble in it. Then we went a little bit beyond the 1 mL to make up for the air bubble. I knew that I was not supposed to inject an air bubble… but we could not get it out! So, I ended up injecting the air bubble. I am not a nurse, I don’t know what I’m doing! Now I have to deal with disposing of this needle AND I still have no more needles for my next injection because there is still a shortage in the pharmacy. [Note: According to the University of Michigan, the air in the syringe of a subcutaneous or IM injection will not hurt you, but air bubbles that are too large can reduce your dose of medicine.² The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment and you should consult your physician about any concerns]

 

Portal Instruments: How do you plan to dispose of the needles?

 

Jody: The doctor told me to ask my pharmacy for a container to put them in and then, once it’s full, bring them to the hospital to dispose of them. I have three young kids and now I have needles in my house. Luckily I have a medicine cabinet that is high up so my kids can’t get to it but I don’t love the fact that I have these needles in my home. It is one more thing on my plate that I have to remember to drop off these needles at the hospital…I don’t even know where I am supposed to go. Luckily the hospital isn’t too far from my house but I am a busy mom with three kids, so adding one more thing on my plate is a lot. 

 

Since conducting this interview, Jody has received her prescription for the twelve needles and will continue to navigate through the ups and downs of self injecting at home. 

 

 

¹ Boyd, Kierstan. “What Is Scleritis?” American Academy of Ophthalmology, 4 Aug. 2020, https://www.aao.org/eye-health/diseases/what-is-scleritis.

 

² Subcutaneous Injection Guide – University of Michigan. University of Michigan, http://www.med.umich.edu/cancer/files/subcutaneous_injection_guide.pdf.