As a LEMS Patient, I’m Concerned About the Ongoing IVIG Shortage

As a LEMS Patient, I’m Concerned About the Ongoing IVIG Shortage

Patients across the United States receive regular phone calls about their intravenous immunoglobulin (IVIG) treatments. Typically, these calls are to confirm scheduled treatments. However, in recent weeks, the calls are causing distress by relaying messages such as the following: “Due to the nationwide IVIG shortage, we need to cancel your appointment.” This shortage has understandably caused panic among patients who depend on IVIG to walk, talk, breathe, and live.

Christina Caron, a friend with chronic inflammatory demyelinating polyneuropathy (CIDP) living in Bangor, Maine, has been on IVIG treatment for 19 years. She, like thousands of other IVIG patients, has taken to social media to ask for plasma donations to help alleviate the shortage. She said that for her, “IVIG treatments literally mean the difference between being able to function and paralysis.”

I am one of many patients who has received a call to tell me that my IVIG treatment has been delayed due to the national shortage. For over a year, my IVIG treatments have been an integral part of my trifecta of meds that have managed my Lambert-Eaton myasthenic syndrome (LEMS) symptoms. I recently shared the benefits that I’ve experienced on IVIG in a blog titled, “Thanks to IVIG, I can fully enjoy life again.” Every patient who is experiencing delays or has been denied treatment is asking themselves, “How quickly will my symptoms escalate?”

CIDP and LEMS patients are not the only ones treated with IVIG. The miracle therapy referred to as “liquid gold” is indicated as a successful treatment in the areas of neurology, hematology, immunology, and rheumatology, and for diseases such as primary antibody deficiency, myasthenia gravis, and lupus. IVIG gives some of us periods in which we are almost symptom-free, as if we were before our lives were turned upside down by our illnesses. IVIG keeps many people alive and has saved many lives.

I contacted a spokeswoman from Takeda Pharmaceuticals, one of the companies that manufacturers IVIG products, to gain an understanding of the reasons for the IVIG shortage. She explained: “Over the past 15 years we have seen demand for immunoglobulins (Ig) steadily increase, and more recently demand for Takeda’s Ig portfolio, including GAMMAGARD LIQUID [Immune Globulin Infusion (Human)] 10% Solution, outgrew the market. …

“As a result of the manufacturing time required to produce GAMMAGARD LIQUID combined with growing demand, we are experiencing interruptions of GAMMAGARD LIQUID that will likely persist throughout 2019.”

She added, “We recognize the seriousness of this situation and are working diligently toward addressing this interruption of GAMMAGARD LIQUID.”

The American Society of Health-System Pharmacists has an inclusive list of the current immunoglobulin shortages that affect multiple brands and are due to increased demand.

As someone with an autoimmune disease, the demand for IVIG is unsurprising to me because the treatment works so well at stopping attacks by rogue antibodies, allowing patients to enjoy life without the fear of being around sick people. IVIG enables me to live fully and happily despite having LEMS. Friends who hadn’t seen me since starting IVIG can’t believe how well I’m doing. Many have said they haven’t ever seen me look or sound as well as I do now. IVIG is genuinely life-changing for me and thousands of others.

Following are my patient-to-patient recommendations for anyone affected by the IVIG shortage. Stay in continual communication with your prescribing provider. Let them know when your symptoms start to escalate. Processing of blood products takes time, so this shortage will not be solved overnight. Patients will need to discuss other treatment options with their providers, which may include plasmapheresis or immunosuppressant medications.

I am one of the fortunate ones. As the deadline approached for this column, I received a call from my infusion center to confirm my rescheduled IVIG infusions the following week. I am relieved because my LEMS symptoms are flaring: My legs are heavy, my vision is worsening, and getting up from my trusty recliner takes both hands. I need to hold on to the wall to ascend the one stair in my house, and my exhaustion has returned to my pre-diagnosis levels. However, though I am receiving treatment soon, the shortage means other scheduled treatments are not guaranteed. I am looking at all available options to manage my illness during this uncertain time.

If there is a rainbow after the storm of this nationwide IVIG shortage, it will be that not a single droplet of blood product will be received without gratitude for the miracle of the entire IVIG process, from donor to patient.

***

Note: Lambert-Eaton 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 another 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.

When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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10 comments

  1. TMP says:

    Thank you for writing this piece and calling attention to this issue. Like so many patients who are able to function because of their IVIG treatments, my 13 year old with CIDP would be wheelchair bound without it. We are so grateful to all who donate but concerned about the shortage.

    • Dawn DeBois says:

      TMP,
      I think the only thing scarier than being a patient in this affected by this shortage, is being the parent of a child being affected by this shortage. I pray that your child continues to get their IVIG treatment needed without fail.

  2. Price says:

    Great article! I too worry about my ability to restart IVIG treatments which had been suspended. Going off IVIG proved how much I depend on it to improve my life with LEMS. Thanks for getting the word out, Dawn!

    • Dawn DeBois says:

      Price,
      I certainly hope this shortage doesn’t keep you from restarting your treatments. You and I both know how pivotal IVIG is to keeping our lives with LEMS manageable. Thanks so much for your comment!

  3. Rachel A McArdle says:

    Dear Dawn, thank you for bringing attention to the serious issues that plague people with myasthenia gravis. I was diagnosed 4 years ago with seronegative mg and I have been trying and failing to find a treatment that doesn’t just make me sicker, or almost kill me, ever since. I used to receive monthly IVIG treatments but my Neurologist stopped them for multiple reasons, witch brings me around to the point of my post. Before my IVIG treatments stopped I had already filled my last prescription for eight bottles of Gammaguard that are currently in my fridge. So my question to you is this “Is There Anyway To Donate My Gammaguard To Someone In Need”? I have researched and frankly not had much luck finding anyway to do this the majority of feedback that I’ve gotten has been to turn it in to be destroyed! I have a 15,000 dollar life saving treatment sitting in my fridge, a treatment that there is a shortage on, so there is no way I’m going to just have it destroyed. I was hoping you might have some insight into how I can help get this into the hands of anyone who will benefit from it’s life saving properties instead of just letting it sit in my crisper.

    • Dawn DeBois says:

      Hello Rachel, Seronegative MG is such a tough disease to treat. My heart goes out to you, just as your heart goes out to patients in this IVIG crisis. I can understand your frustration, completely. However, once a drug has been dispensed to a patient, by law, it cannot be transferred to another patient. Thank you for reaching out and asking. It shows what a giving and caring heart you have. I hope and pray that a successful treatment is found soon for seronegative myasthenia gravis such as yourself.

  4. S. Franks says:

    I have a child in my care who suffers from Opsoclonus Myoclonus Ataxia Syndrome, a neurological disorder, and has been receiving IVIG treatments monthly up until May of 2019. She was scheduled to have her monthly treatment in July of 2019 but I was called the day of, literally within 2 hours of leaving for CHOA, that due to a shortage of medication, her appointment was canceled. I was told it would be delayed about a week, however, it’s been almost SEVEN WEEKS and still no call. Now I know why. After doing research and seeing how many people depend on this medication & finding out about the shortage of donations of plasma, I don’t think they will be calling her any time soon because she is not considered critical. PS I’ve also looked into becoming a plasma donator to help the overall cause.

    • Dawn DeBois says:

      I am so sorry to read this and I hope that your child is hanging in there without getting her treatment. Perhaps there may be other ways of her receiving her treatment than the source she had been receiving it prior to the shortage, such as possibly home infusion or at another center? Also, keep calling the infusion center where she had been receiving treatment, if you haven’t been already. Being the squeaky wheel helps. I hope and pray that she gets scheduled in one way or another soon. Thank you for looking into becoming a plasma donor. ~Dawn

      • S. Franks says:

        Thanks for your kind words. Unfortunately, she is not considered critical and I have called once a week only for them to tell me she’s at the bottom of a long list of people with cancer and other diseases who receive this treatment multiple times a week. I’ll just hope and pray things work out. I plan to go in for a preliminary checkup to see if I qualify to be a donor on Friday. Hope I can donate. Hope things work out for you as well.

  5. During these difficult times, we would like to extend our hand and offer access to these hard-to-find IVIg and SCIg medications.

    Even in the midst of Ig shortage, AmeriPharma’s extensive relationships with manufacturers and distributors has allowed us to stay fully stocked, so patients have access to the Ig they need.

    AmeriPharma is licensed in 17 states and territories across the United States. We accept Medicare and most private insurances.

    Learn more at https://bit.ly/30V1gZm
    For faster service, speak to an IVIg pharmacist directly at 855-918-0815.

    AmeriPharma Specialty Care
    855-918-0815

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