Myasthenia Gravis News Forums Forums COVID-19 and MG Evusheld Antibody Treatment

  • lisa-blutman

    Member
    March 30, 2022 at 7:11 pm

    I have requested it as after 4 COVID vaccines I still have zero antibodies. I am meeting with my family practitioner on the fifth of April to discuss this. My neurologist sees nothing wrong with it.

    • susanfridgen1965

      Member
      March 31, 2022 at 8:38 pm

      I received the evusheld on 3/30/22. So far no side effects. It was ordered by my oncologist that I see regularly.

  • teriweber

    Member
    March 30, 2022 at 7:38 pm

    Yes, I received ES, 300 mg of each ES consists of two drugs), thanks to a pal of mine who got hers. The CDC guidelines are now 300 mg of each from previous 150 mg of each. The process is very specific. 1. go to you states site and get the list of registered and approved facilities for monoclonal AB’s (MCAB) 2. Your doctor has to belong to one of the facilities listed OR part of one of the overarching systems such as Amita, Ascension, North Shore, Northwestern Memorial, etc. 3. The sites listed for your state will provide MCAB’s for their doctors’ patients only. For example the Hinsdale Amita Cancer clinic will only provide for their own tribe meaning the oncologists on staff and the patients of those oncologists. If your doctor does not belong to an approved facility, which was the case for me, you have a bigger battle to fight. Your doctor has to contact one of the doctors from an approved site and get A. all the details necessary to create the medical case documents to justify the request for MCAB’s B. the name of the head Department Director that approves all the requests and what that approver looks for in an application in order to approve it and C. an admin to help process it appropriately within the system – is a specific process when not followed your application gets tossed. Also need the admin to follow up and get you scheduled at a facility that has a supply of the ES at the time you are approved.

    Your doctor will be required to write an order for the ES and an order for a PCR COVID test that they will schedule with the ES and is taken 2-3 days prior. They expect one to shelter in place after the PCR and until the ES is received.

    I was sick for a few days afterwards with fatigue and minor flu like symptoms, however, I have 11 autoimmune diseases, 4 of which are fatal/incurable, including CVID – almost no immune system. I get 4 hour infusions of other peoples antibodies every 2 weeks that keeps me alive. I got 2 Moderna vac’s and was sick for 3 weeks after each one with the same symptoms. I got the booster and was sick a week with the same symptoms. My pal who has different diseases than I do had no reaction whatsoever. I also have no COVID Ab’s after my vac’s & booster.

    Hope this helps

  • bill-johnson

    Member
    March 30, 2022 at 8:29 pm

    I have anti-MuSK MG, treated with rituximab 1,000 mg. infusion every 6 months. I got the Moderna vaccines (two doses) in Feb. 2021, received my rituximab infusion in May, and then in June 2021, when tested, I had no antibodies to SARS-CoV-2. My immunologist felt that boosters were a waste of time and vaccine because of the effects of the rituximab. At the time, my only option was to isolate (or be masked and careful when out). After Evusheld was released in January, my immunologist wrote me a script. I had to get on a waiting list. When they called me, the nearest site was over an hour drive away, but I opted for it. They gave me a double dose (4 vials IM which is standard for the first dose) on March 18th. I had no symptoms after the administration. We haven’t drawn antibodies yet to see if I have generated any. I understand that I will need to return every 6 months for the Evusheld. Keeping my fingers crossed. Hope this information helps.

    • barbara-e

      Member
      April 5, 2022 at 12:46 pm

      Wow! It sounds like I had a much easier time getting Evusheld and I’m not certain why. The only limitation was that it was only available in 2 pharmacies in my area. My immune doctor simply sent the order electronically and the next day, the pharmacy called me to schedule my appointment, which could be within days. For my 2nd Evusheld injections, I had to wait a week for their stock delivery, but still no difficulty. Once there, part of my paperwork was a form that I had to check which reason for getting the injections. But, it was all very easy and quickly finished. Perhaps, my doctor had it down to routine for her immune patients, which simply made it look easy to me.

  • douglas-f-young

    Member
    March 30, 2022 at 9:26 pm

    I had the shots, zero side effects, not even soreness at injection sites.

    I ran into very little red tape. The infusion center gave me the name of a local doctor qualified as an infectious disease specialist.  I sent an email to my doctor giving him the other doctor’s name. That specialist reviewed info from my doctor, and found me suitable for the shots. My doctor then sent an order to the infusion center and I  had the shots at my next visit.

    The only thing I might add would be that it is not a treatment for covid; it is designed to actually prevent the disease from taking hold in the body. It also is absolutely not a substitute for vaccines.

  • deborah-a-dortzbach

    Member
    March 30, 2022 at 9:26 pm

    I am blessed to have received Evusheld Antibodies — twice, in fact because the first doses  were deemed inadequate, and I just went for “catch up” doses. I had no real reaction, except headache the second time. I am extremely grateful for this layer of prophylaxis protection.  In addition to MG, I have ankylosing spondylitis (AS), an additional autoimmune disease and am taking cellcept for MS and a biologic injection, Cimzia for the AS.

    Debbie

  • barbara-e

    Member
    April 1, 2022 at 10:54 pm

    Because of a weakened immune system (supplented by weekly SCIg treatments), I was instructed to get 3 full doses of the Moderna vaccine (instead of the normal 2 injections). The only noticeable reaction was a somewhat red, sore area at the injection site for over a week. Then 3 months later, I received my 1st Moderna booster vaccination (similar vaccine reaction as before).

    2 weeks after my booster, I was advised and received the Evusheld monoclonal antibody injections (2 injections given to divide the needed dose between different spots). My immune doctor explained that Evusheld was to help supplement my antibodies and were expected to last about 6 months.

    A head of time. I was told most of what to expect, including that I’d need to pay $100 for pharmacy’s administrative cost (the actual test/vaccine cost was covered). I was given a Covid-19 test and could only get the injections after getting a negative result.

    I must admit that I laughed when I realized that the shot locations were my butt cheeks (not my arms). But she was very fast and it was painless. I was required to sit in my car for the next hour and the staff verbally checked with me every 15 minutes to ensure I had no reactions. After being cleared, I was able to go home.  The entire process took about 1.5 hours and I had no reactions afterwards.

    A month later, I was surprised when my doctor advised me to get a 2nd Evusheld vaccine. But, I followed her advice and got a 2nd round of the Evusheld injections.

    I’ve been told to wait until 90 days after the last Evusheld injections before getting a 2nd Moderna vaccine booster. Also, she mentioned that I should expect the need for additional boosters at some point in the future. I don’t like needles, but it beats getting Covid-19… especially when even a mild infection would make my MG symptoms worse!

     

  • william-stackpole

    Member
    April 4, 2022 at 11:15 pm

    I received both doses and no side effects. I don’t know about other states but you do have to be taking certain Meds in order to qualify  for the shots. Which most of us on this page should qualify.

  • barbara-e

    Member
    April 5, 2022 at 2:41 am

    Because of a weakened immune system, I’ve administered weekly subcutaneous IGg treatments for several years before the pandemic. When Covid vaccines became available, I was instructed to receive 3 full doses of Moderna vaccine, and then a booster dose of Moderna 3 months after the last full dose. Each time, my only reaction was a the red, sore, slightly raised area around the the injection site that gradually faded in about a week.

    15 days later, as instructed, I got the Evusheld monoclonal antibody injections (1 shot in each butt cheek to divide the load). Then, my doctor contacted me a month later and told me to get the Evusheld vaccination for a 2nd time. When my doctor instructed me to get Evusheld, she said that it was advisable to get the booster about 90 days after the last Evusheld injection to continue full protection.

    Keep in mind that Evusheld is not the same as the preventative vaccines, like J&J, Pfizer or Moderna. They are ment to stimulate/teach your immune system to recognize the virus to allow your immune system to produce antibodies if/when exposed in the future. Evusheld provides antibodies to people, who might not produce any/enough antibodies on their own. Unlike othr Covid antibody treatments (given when you’re sick), Evusheld can’t be administered if you are currently infected. Therefore, they will first administer a rapid Covid test, which must be negative to continue. After the injections, you will remain onsite for an addition hour and checked every 15 minutes for any reactions (I had none).

    The total for an Evusheld appointment (from paperwork to leaving) is approximately 1.5 hours and you will most likely have to pay an administrative fee ($100) separate from what is covered by insurance. Evusheld injections are expected to provide protection from the Covid virus for about 6 months, but are still not normally meant to replace Covid vaccinations.

    I hope this information helps!

  • douglas-f-young

    Member
    April 5, 2022 at 6:21 am

    Excellent summary. My team came to the conclusion that waiting 2 weeks before the next booster was sufficient. The Evusheld materials say to refer to the CDC guidelines regarding covid vaccines, but I could find no guidance whatsoever in those materials. I guess your mileage is going to vary.

  • Marvin Yudenfreund

    Member
    July 2, 2022 at 6:37 pm

    I was fortunate to have responded positively to the Moderna vaccine with a positive Covid titer 2 weeks after the first series.  I got a double shot of Evusheld (so I didn’t have to return for a second shot) in March.  My family physician has ordered a second Evusheld treatment in September because she (an infectious disease specialist) said that it was only effective for 6 months.  Didn’t suffer any ill effects from the Evusheld, other than a sore butt.

  • susann

    Member
    July 6, 2022 at 8:38 pm

    I had it March 28 bc I have 11 autoimmune diseases am on three immune suppressants and I have an inherited primary immune deficiency called CVID. I hurt and had increased arm weakness with the first Covid shot but with the second and third shots I had severe flu like symptoms and fever to 104.

    The evushield is probably the only med I had absolutely no side effects with. I read an article yesterday and they are recommending to be given every six months. I would take it any day over the vaccine boosters

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