My Monthly Infusion Always Brings Hope
Today is my infusion day, and I’m excited and hopeful.
I’ve been taking Inflectra (infliximab-dyyb) for about four months. Before that, I was on Remicade (infliximab), until my insurance company suddenly stopped approving it, compelling me to switch. The U.S. Food and Drug Administration considers the two to be biosimilars, so it wasn’t a big deal for me. I haven’t been able to tell a difference between the medications.
This monthly infusion is an example of how tough managing a rare disease can be. It helps to be an active participant in your care and have a strong support team of medical professionals, friends, and family. Currently, most insurers don’t recognize Remicade or Inflectra as sarcoidosis treatments. They are more commonly prescribed to treat conditions like rheumatoid arthritis and inflammatory bowel disease.
This can lead to some challenging conversations with insurance providers. In my case, having a team at the Johns Hopkins Sarcoidosis Clinic is beneficial, as they have a process for pushing for the approval of my infusions, even if they are initially rejected. We will be putting this to the test shortly, as my insurance coverage is changing in 2022.
While the care I receive from Hopkins is world-class, part of the reason I keep these Maryland-based doctors (when I live 200 miles away in Brooklyn, New York) is because I trust that the recommendations from Hopkins specialists carry a great deal of weight and credibility. When a patient needs care, they are more likely to be able to provide that care.
But why does infusion day bring me hope? There are a few reasons.
Firstly, a monthly three-hour infusion means fewer pokes, as the medication keeps my skin clear from the effects of sarcoidosis. I used to get injections to help reduce inflammation and redness on my nose and even in my tear ducts. Now, I have quite a few tattoos, so I’m not afraid of needles, but I can assure you that having needles in your nose and tear ducts is a different level of annoying unpleasantness. The infusions mean I no longer need these injections, or even most of the creams prescribed by my dermatologist.
Secondly, the infusions reduce the number of pills I have to take, and my pulmonary sarcoidosis fares much better. I still take about 150 pills a month, but without the infusion, it would be a few hundred. I especially like that I usually take less than 10 mg of prednisone each month. We are still evaluating whether I will need to increase the dosage again, but the infusions at least give me a chance to find out how much I can reduce other medication dosages. Considering the horrible side effects that can accompany many of those pills, taking less is a wonderful thing.
Lastly, even though infusions often leave me physically tired, I am always mentally energized afterward. (Well, after a nap, at least.) I get to do my infusion at home, exchanging only three hours a month for far better sarcoidosis outcomes. And this means I get to feel more “normal,” and have a better chance of being there for the people I care about.
While I’m sitting through each infusion (I’m admittedly writing this column during one now), I usually have time to think. Even though the holiday season is often mentally and emotionally difficult for me, as I’ve lost so many loved ones, these few hours help me feel better about what is to come.
And perhaps that is even more important than the physical benefits.
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Note: Sarcoidosis 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 Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
Janet
I live in Canada and have not been able to be referred to a specialist for Tx . My 15 yr journey with a granuloma in my lung has been fairly gentle but I now suffer with hives , skin itching ,and swelling in my ankles and pain along my lymph glands at my left chest wall. Hopefully I will soon get some help.
Alan Bart Cameron MD
My experience with Infliximab and Remicaide is somewhat similar, although it is hard to know what is happening with a disease that normally seems to wax and wane anyway. I am using one of the few centers that have a Sarcoidosis Team approach, and conduct research. I was at one point considered too sick with too short a life expectancy to consider a lung transplant- but that was 20 years ago and I am not yet dead. 20 years ago I had an open lung biopsy on Christmas eve- alone, and afraid that I was going to die soon and never return to practicing medicine again. At that time, I was treated with steroids in high doses, and my CT scans showed considerable clearing of granulomas, and PFTs improved as well. My chronic migraines disappeared, and my RA in hands and feet also improved. I gained a LOT of weight- but I was able to return to work, met a new flame and remarried. The high dose Prednisone over the years led to predicted issues but better than death. Since I started the TNF-a drug Infliximab I have better pain relief from my joint pain, and have been able to dramatically reduce my steroids. I remain diabetic, but my CGM device shows my average blood sugars are in the range of 130, and A1C level is around 6. LFTs are low normal.
I am not yet where I want to be in terms of control of symptoms, but as I say, I am not dead yet. At 75 during a covid pandemic, retirement seemed prudent. My Sarcoid team feels that the literature does not yet support increasing the dose- but we do not have a lot of options.
If you are at odds with your insurance company- you do have rights to appeal adverse determinations of coverage. Insurance companies might claim there is no FDA approved indication to treat Sarcoid with a TNF drug. But... Sarcoid is a RARE disease, with many manifestations, so large double blind studies over years is not easy to do, and drug companies are reluctant to spend the money for so few patients. The key to acceptance is "known to be safe and effective by most physicians licensed to practice" (autoimmune disorders) - so you get your provider to write a brief letter- and ask for a PRO (peer review organization) review under Medicare Guidelines. (even if you are not on medicare)- You should win virtually all the time. My first infusions were almost $7K a dose, but with applicable insurance are under $300 @ now. It is worth the effort to get it covered.
My own personal experience is not actual proof that it works, but it remains a possibility to followup. My personal wish is that you continue to improve and enjoy a normal life.
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DebbraP
Calvin, I feel the same way about Methotrexate. It brings me hope. Sure, I take it and then for the next two days I feel like I was hit by a bus. But I still have five days left in the week to enjoy and the Methotrexate helps me breathe. So, from that viewpoint I don't dread it. Kudos on doing your own infusions at home! I did not even know a person could be approved for that. It's good to know. If I ever need to start infusions, I just might ask about doing it myself at home, too. Thanks for sharing that.
Glenn Giametta
I am glad I read your post because I took the meth on Friday and slept a lot on Saturday. I couldn't figure out why I was so tired. I will be starting the infusion in a few weeks.
Thanks for posting