Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis IVIG Getting Approval, Easy or Hard?

  • IVIG Getting Approval, Easy or Hard?

    Posted by Price Wooldridge on December 13, 2021 at 7:00 am

    In the past couple of weeks, I’ve spoken with at least three people considering starting IVIG and wondering how, or if, it will be covered by insurance, or getting denied.

    The literature is out there that IVIG immunoglobulin is effective in treating LEMS. There have been large studies on its efficacy with our sister disorder, MG. Because we’re so rare, large studies have not been done for LEMS.

    Here’s one such paper in the National Institute of Health library, here.

    Immunoglobulin therapy is expensive. I could cite the billing I see of my own service, but it may not be relevant in other cases. I think it safe to say one course of immunoglobulin can cost in the tens of thousands of dollars. I’m lucky the VA has covered my expense for IVIG with no co-pay, and I’m not aware my neurologist had any difficulty getting it started.

    But I hear of other cases where insurance balks. I searched up a 39-page document from a large health insurance provider, to see what criteria they have for giving IVIG for LEMS. Read this list of items, and one can get a sense of their mindset:

    Lambert-Eaton myasthenic syndrome (LEMS)

    Additional information to support medical necessity review where applicable:

    Immune globulin is medically necessary for the treatment of Lambert-Eaton myasthenic syndrome when all of the following criteria are met:

    o Diagnosis of Lambert-Eaton myasthenic syndrome (LEMS); and
    o History of failure, contraindication, or intolerance to immunomodulator monotherapy (e.g., azathioprine, corticosteroids); and
    o Concomitant immunomodulator therapy (e.g., azathioprine, corticosteroids), unless contraindicated, will be used for long-term management of LEMS; and
    o Prescribed by or in consultation with a neurologist; and
    o IVIG dose does not exceed 2,000 mg/kg per month given over 2 to 5 consecutive days.
    62 IVIG administration may be repeated monthly as needed to prevent exacerbation. Dosing interval may need to be adjusted in patients with severe comorbidities; and
    o For long-term treatment, documentation of titration to the minimum dose and frequency is needed to maintain a sustained clinical effect.

    This is quite a list!

    Have you been successful in getting IVIG coverage from your insurance? Have you been denied? And if you’ve been denied, were you able to appeal with success?

    Y Petrie replied 2 years, 3 months ago 4 Members · 7 Replies
  • 7 Replies
  • Tescha

    January 5, 2022 at 7:31 am


    I have been on IVIG every 2 weeks for 2 years and plasma for 1 year.  I didn’t have any insurance issues until this past Oct 2021 when I started Medicare.  I was told Medicare guidelines only pays for IVIG every 31 days.  I have been receiving IVIG every 2 wks for years.   Since they change my condition has worsened and developed new symptoms too.  My neuromuscular specialist states now i have multiple organ involvement.  Has anyone ran into issues with Medicare?


    • Price Wooldridge

      January 5, 2022 at 7:14 pm

      @tcarr20 Tescha, It’s unfortunate the switch from bi-weekly to once a month infusions has caused you problems. Insurance coverage can be maddening. On my every 4 weeks schedule that fourth week can be a problem for my LEMS. I’ve discussed weekly at-home infusions to keep antibodies levels up, but my neurologist in the VA says they won’t do that.
      My only suggestion is you make doubly sure this is the Medicare policy, and if there is any exception or supplemental application that could override this policy. Basically I’m just saying do your due diligence regarding Medicare.
      Beyond this, i hope you and your neurologist can adjust your plan as necessary to get your LEMS back where you have done better.

  • Desiree Taliancich

    February 27, 2022 at 4:00 pm

    As I have advised you in the last, Blue cross denied my authorization. They are recommending other meds to start instead and I receive plasmapheresis once monthly, 2 sessions 1 day apart. This does not seem to be enough. Unfortunately, LEMS has begun affecting my swallowing, voice, and worse with bladder function. I see Mayo neuro tomorrow. Hoping we try for IVIG again. I will keep you posted.

    • Price Wooldridge

      February 27, 2022 at 4:08 pm

      @deztali1980 Desiree I was wondering when you were going to go! This is great. I want to know all about it when you get home!

  • Ashley

    February 28, 2022 at 7:17 am


    I’m so sorry your insurance is giving you a hard time about IVIG auth. What meds are they recommending you try first?


    I hope your appointment at Mayo today goes well! Please keep @pricewool and I updated and reach out if you have any questions! I would also see if Mayo can make a new request for IVIG auth.

    • Desiree Taliancich

      March 16, 2022 at 11:03 pm

      Hi Ashley! I heard the podcast and was surprised to hear that one of the symptoms you experienced at the beginning was acid reflux. This was outside of your norm. Has this improved since starting your IVIg? Also, do you take any other meds in addition to IVIg?

  • Ashley

    March 22, 2022 at 8:50 am

    Hey @deztali1980

    Answered this in the private message you sent me!

  • Y Petrie

    March 25, 2022 at 6:02 pm

    Insurance authorizations what fun…I own a hyperbaric clinic and we have to do prior authorizations for many insurance companies.   I found it helpful to “think like an insurance company”.  1 – Most insurance companies are not in the business of paying claims, they are in the business of making money. 2 – They want to save money by having you try and FAIL the least expensive treatments before paying for the more expensive ones.

    For instance – I was doing extremely well on GammaPlex.  New ins company, new authorization.  Their preferred drug was GammaGuard.  I reacted so badly to GammaGuard I landed in the hospital.  Cost the insurance more money had they just stuck with GammaPlex, but had it worked it would have been more cost effective for my insurance.

    So, I recommend getting a copy of your insurance companies’ policy for IVIG – usually you can do an internet search for your insurance company name and IVIG policy and find it in moments.  Take it to your doctor and ask them to follow the requirements and DOCUMENT.  I had to try steroids, Methotrexate and one other drug, and either have a bad reaction, allergic reaction or no response.  I am allergic to most steroids, so that had to be documented instead of trying them.  I also had to take one of them while doing IVIG.  Once that is documented in the record, then you can get IVIG approved.  It is an effort, but worth it for those who respond well to IVIG.

    Without going through the process and meeting the criteria — it is different for each ins company — getting approval is difficult.  But at least if you know it you can empower yourself and your doc to do what is needed to get IVIG approved.

    Hope this is helpful…

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