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  • Immunoglobulin Reaction in these pandemic times

    Posted by price-wooldridge on April 7, 2020 at 12:08 pm

    Hi all!

    Well once again I’m having a new, kinda new adventure with immunoglobulin.  I had a bad reaction during my loading doses initially, and ended up stopping after two because of fever, high blood pressure, and feeling very sick.  After that we just began a monthly infusion schedule for every four weeks and all went well.  A time or two maybe I had a minor reaction post infusion, but no bad reaction until this week.  My last infusion was this past Wednesday.  It has been an especially good one for my LEMS because my hips have felt exceptionally free from weakness.  But then Sunday, 4 days out I began feeling poorly, feeling flushed, nauseous, and sick.  In other words, I was having an allergic, flu like reaction.  Or did I pick up Covid19?  I’d been out last week two days for infusions, one day for food, and one day to clear out my rental storage room.
    I’ll continue this in my next post.

    romy-braunstein replied 3 years, 7 months ago 4 Members · 6 Replies
  • 6 Replies
  • price-wooldridge

    April 7, 2020 at 12:19 pm

    On the Monday after Sunday’s start feeling bad, I contacted my Primary who told me to go to the ER.  Because of the allergic feeling, I started Tylenol and Benadryl, my standard protocol for IVIG.  No Zofran at home though.  To keep it brief, all my bloodwork was negative.  The flu swab was negative, blood negative, COVID19 swab pending because it had to be sent out.  I’m waiting on results.
    contacting my friend and LEMS knowledgeable advocate, Dawn, I’m learning these allergic, flu-like symptoms as a reaction to immunoglobulin can occur up to a week out from infusion.  This is exactly where I was in my infusion schedule, 4 and 5 days out from infusion.  Today, the third day of feeling ill, I’m better with just a slight flushed feeling.  I am continuing the Tylenol Benadryl protocol today.  Now I’m much less suspicious of the corona virus and feel this is highly likely a late reaction to the immunoglobulin, which I haven’t had previously.  I’ll report the COVID19 result when I know it, but feel pretty strongly it wii return negative.

  • jerry-hirsch

    April 11, 2020 at 8:21 am

    Wow Price, sounds like you had a rough week. I was on IVIG for 2 months, and I was told that it could take up to 8 months to notice an improvement in my LEMS symptoms. I didn’t have any allergic reactions while getting the IGI at a large infusion center administered by The Cleveland Clinic. Then the COVID-19 became a major issue in our country, and considering my age, immune suppressant condition, and underlying health issues, I was hesitant about exposing myself in a clinic full of “sick” people for an average of 5 hours, 2 days in a row, every month. Then, following Dawn’s articles about how much she praised SCIG, (after “fighting” with my insurance company to get it approved, after denied it, I started weekly Subcutaneous injections 3 weeks ago, in the safety and comfort of my home. For the first session a nurse came to my home to show me how (a lot of steps, but well written instructions) it’s done, as she did all of the work. The 2nd week she came back to “walk me” through the process, and yesterday (my 3d session) she came back just to watch that I was able to do it on my own. I passed the test, so I’m set at home, from where I’m self quarantined. Thank god for NETFLIX and Amazon Prime video.
    Take care, and I hope you’re feeling better by now, and somehow can enjoy Easter tomorrow.

  • romy-braunstein

    April 11, 2020 at 3:37 pm

    Hi Price,
    I really hope you did not get the virus!! Please say well and safe!!

  • price-wooldridge

    April 13, 2020 at 11:14 am

    Thanks Romy!

    As a final update to this thread, I was tested for Covid-19, several other caronaviruses, and several flu strains as well.  All are back negative, and I’m back feeling 100 % after 6 days of flu-like symptoms and feeling especially bad for a couple of days.

    It now seems evident I’ve had an adverse reaction from my immunoglobulin infusions 4 days out.  Two things tripped me up.  First, I had not had any adverse reactions in many many months of infusions.  Second, I’ve never had an adverse reaction delayed out like this this.
    I’ve learned a valuable lesson with this event.  It’s important to remain alert for an allergic, flu-like reaction after ALL infusions, even days out.  I will be more aware, and begin my protocol of Tylenol and Benadryl at the first sure signs of a reaction.  LEMS is an ongoing adventure in learning and adapting.

  • dawn-debois

    April 16, 2020 at 9:29 am

    Hi @pricewool,

    I’m so glad you are feeling better.  I always had flu like reactions on IVIG; but the difference the treatment made for my LEMS, once I started to feel better, made it worth it. I always counted on not feeling great 4-7 days out from the first day of treatment.  Not only would I feel like I had the flu, I’d get pretty bad headaches as well. BUT, it was absolutely worth it to feel so much better the other 3 weeks a month!

    However, now that I’ve transitioned to Sub Q infusions at home, I no longer have those reactions. I may feel tired the day after infusing, but that’s it. I’m absolutely loving it!

    I’m so happy that it was only IVIG and not COVID that you were dealing with!

  • romy-braunstein

    April 17, 2020 at 5:31 pm

    Be careful!! I have heard both positive and negative reactions to the infusion. However, the one common thing they had in common is that they all had their symptoms simmer down.

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