IVIG and Me: How Having a Port Has Improved My Treatments

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by Shawna Barnes |

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One common treatment for myasthenia gravis (MG) is intravenous immunoglobulin (IVIG). I was initially treated with IVIG for my symptom flares and exacerbations. Thanks to detailed notes kept by my infusion nurses at the Veterans Affairs (VA) clinic in Maine, where I received those infusions, and because of the improvements I experienced, the members of my care team agreed that I should try using IVIG therapy as part of my maintenance treatment plan for MG.

According to a plan developed by my neurologist, the members of my care team, and me, I had three months of what is called a “loading dose,” in which I received a higher than normal amount of IVIG (2 g/kg). (Keep in mind that every myasthenic is different, as are our treatment needs. This may not be what your healthcare provider deems reasonable or necessary for you.) I received IVIG therapy once a month for the first three months of this year through regular IV sticks in my arm or hand. Each treatment took two days. In April, I started a maintenance dose of 1 g/kg every three weeks.

During the regular infusions, we discovered I was considered a “hard stick” because I have deep veins in my arms. I can tolerate the maximum infusion rate without any side effects from the IVIG, such as the notorious IVIG “flu” or headaches and body aches, but my veins were not happy with such a fast rate. The veins in my arm would start bruising by the end of the second day, and if we had to place an IV in my wrist or hand, they would bruise shortly after getting above an infusion rate of 400 mL/hour.

When you’re getting 1,000 mL of IVIG infused in a day and have to slow down the hourly rate, it can become an all-day ordeal. Thanks to the lack of side effects from the IVIG itself, we can go at the faster rate despite my veins. My infusions, therefore, generally take four hours.

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IVIG makes me feel so much better. I am one of the lucky ones who can tolerate a higher infusion rate without any side effects. I prepare the day before my infusion by making sure I am well hydrated, eat a good breakfast, and munch on snacks throughout the day. These preparations seem to help me avoid side effects.

The day after my infusion, I am exhausted, so I allow myself to sleep in and then nap in my recliner during the day. I start to feel the benefits of an infusion about 48 hours later. My energy improves, and I just feel better. This has benefits and drawbacks. When I feel good, I forget to pace myself, and the realistic expectations of my abilities with this disease go right out the window.

Getting a new port

Because of the decision to continue with regular IVIG treatments as part of my maintenance treatment plan, the nurses at the Maine VA clinic recommended I have a port placed. It didn’t happen while I was still living in Maine, but it became possible after my husband and I recently moved to Wisconsin. My new care team in Wisconsin was able to push through the necessary referrals, and within two weeks of moving, I had a consultation and a date for the surgery. My port was placed on April 21.

A port is a medical device implanted beneath the skin, with a catheter that is fed directly into a larger vein in the neck. It makes infusions easier both for the nurse and the patient by reducing or eliminating the need for IV pokes.

I had my first infusion using a port a week ago. My neurologist wanted to run some lab tests, so my nurse pulled blood through my port before beginning the infusion. This meant I didn’t need to get stuck in my arm. It was so much easier than having an IV in my arm or hand.

While I knew a port would make my life easier, I was still apprehensive about it leading up to the surgery. I had more anxiety about the port placement than I did when I got a thymectomy in 2020! At first, it bothered me that I was anxious about a simple outpatient procedure. Then it dawned on me that it was because it symbolized the disease’s progression. I wasn’t going to get better, and having this medical device implanted in me was a recommended next step. It meant accepting that this is my new normal.

IVIG infusions every three weeks and a handful of meds give me a quality of life that doesn’t involve being firmly planted in a recliner all day. If these regular infusions and the port help me get to where I can ride my handcycle again, go for walks with my husband, engage in my hobbies more frequently, and improve my overall quality of life, I’ll take it with a big ole smile on my face.


Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

Comments

Carol Mitchell avatar

Carol Mitchell

I had a thymectomy in 1989 and started IVIG infusions after the surgery. I had these infusions every 1 month to 3 months for close to 8 years. This has been a long journey, but I do believe the thymectomy and the IVIG saved me from years of torment and exhaustion from MG. I only have flare ups now when I do not pace myself or am under a lot of stress. I have had to learn how to live with this disease. It can be done. Keep a positive attitude and remember, this too can be managed if you find what works for you and follow it.

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