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Posted on 6. November 2014

IVIG 101

By Michelle Greer, RN, MBA

Many people begin intravenous immune globulin (IVIG) therapy with little to no understanding of what it is and what it does. Immune globulins are antibodies that are part of the immune system. Antibodies are produced and mature in bone marrow and are an important part of a healthy immune response. IVIG is given when there is a deficiency or malfunction in antibody production. When there are not enough antibodies produced, or if those that are produced do not function properly, it can result in an immune deficiency. IVIG replaces this deficiency. When the immune system malfunctions and creates antibodies that attack one’s own body (autoantibodies), this can result in an autoimmune disease. IVIG is used to suppress the immune system so this attack subsides and symptoms resolve.

IVIG is made from thousands of pooled human plasma donations. To prevent transmission of blood-borne viruses or diseases, plasma donors are carefully screened, and the donated plasma is tested and treated to ensure it does not contain any pathogens. Basically, each person and their donated blood are tested prior to combining it with other donors, known as pooling. IVIG manufacturing has evolved over the years, and the product is very safe.

There are several manufacturers of IVIG, and each one uses a slightly different process to separate the antibodies from the plasma. These differences may result in patients having better tolerability with one brand over another. Antibodies cause reactions in the body. For instance, infusing them quickly from start to finish can cause severe and intolerable side effects. This is why an infusion is started very slowly and gradually increased to a predetermined maximum rate to decrease the potential side effects. In addition, if side effects are experienced, sometimes simply pausing the infusion and restarting at a slower rate is enough to alleviate them. Each person tolerates IVIG differently; therefore infusion times vary from person to person and should be determined by the doctor and/or pharmacist.

Once the infusion time is determined, the next step is to find out how the patient is tolerating it. If there are side effects, the infusion can be slowed. If there are no side effects, the IVIG may be able to be infused more quickly. IVIG can be a very lengthy infusion, so if it can be safely infused more quickly, it can shorten the process. Any changes from the original infusion time that was approved by the physician should be approved again. And, it is important for a patient to know his or her brand, how many grams he or she is receiving and what the infusion schedule is, including rates and duration. Do you?

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Comments (2) -

Lidia G. Barber
1:48 PM on Friday, November 21, 2014

I have IVIG for the past twelve yerar's, and it is a very difficult time for me, due to the side effects.  Last month we slowed it down from ramping of 150 to 125, it was the first time the side side effects of headaches, neck pain, cramps, nauseas, chest pains and difficult breathing were  less. I have myasthenia gravis, went trough 2 month of radation due to the cancer on my thymus gland and I am alive.  If it was not for the IVIG, I don't think I would be here today and I thank God for that and a wonderful neurologist here in Phoenix.

Jacquie Green
7:12 AM on Wednesday, March 30, 2016

I have just been diagnosed with immunoglobulin deficiency and had one IVIG in the hospital and my first out-patient one this past Monday.  So far so good.  Headache, backache, cramping a little - may not be related - but I'm just grateful the doctors figured out what was wrong.  I bruise very easily, has anyone had a port installed for easier infusions?  Thank you.

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IG Living Blog | 10 Indispensables for Those with Chronic Pain and Illness
IMMUNE  GLOBULIN  COMMUNITY
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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 1. December 2015

10 Indispensables for Those with Chronic Pain and Illness

By Toni Bernhard, JD

Here is a list of essentials for those who are chronically ill.

Posted Nov 08, 2015

This piece is based on personal experience and on the thousands of emails I’ve received from those who live day-to-day with chronic illness (which includes chronic pain).

1. Email

I know the joy of hearing the actual voice of a loved one. That said, email is the principal way I communicate with people.

It’s hard for me to talk on the phone. It saps my energy quickly, partly because of the need for nonstop back-and-forth conversation. Unlike visiting with someone in person, when I’m on the phone, silences feel awkward and sometimes even suggest that something’s wrong.

In addition, I can’t control what time of day a call will come in. It could be when I’m about to nap, or while I’m still groggy from sleep, or after I don’t have an ounce of “juice” left. By contrast, I can send an email any time of day, and I can receive one at three in the morning and do nothing about it until I’m ready to “talk.”

Finally, I love the instant (and free) communication with people from all over the world. The other day, a woman in Syria wrote to me about my first book. That was truly special.

I use email for “business” too. For example, when I’m interviewed, more often than not, the person sends me questions via email and I answer them when I’m able. Of course, if it’s a podcast or radio show, I have to use the phone or Skype, but that can mean conducing the interview when I’m too sick to be talking.

Recently, I was interviewed over the phone, all the while with a bloody nose-it being one of the side-effects of a medication I’m on. It started bleeding a couple minutes after the recording started so I didn’t feel I could say anything. I held one nostril shut during the entire interview, quickly switching to a new tissue when necessary. I thought my voice sounded far too nasal but, afterward, the interviewer said it was fine. I can look back at this now and laugh, but at the time, it was terribly stressful. Good thing I wasn’t being videoed! Yes, I love email.

2. Being nice to yourself

It took several years for me to figure out what seems obvious now: it’s not my fault that I’m sick and in pain; it happens to everyone at one time or another in life. In my view, becoming your own unshakeable ally is indispensable. Think of it as self-compassion in action.

One way to be your own ally is to forgive yourself when you act unskillfully, such as staying up too late or taking on too many commitments. It’s natural to rebel at times and try to do everything that healthy people can do. Instead of getting down on yourself-which only makes you feel worse-learn from your mistake, forgive yourself, and move on.

I think of this as the indispensable of No Blame! I’m not 100 percent successful at being nice to myself, but when I’m able to say, “Okay, I blew it by getting down on myself; no blame-just try again,” I know I’ve struck an indispensable chord.

3. Pacing

I include pacing even though I’m not very good at it. I’m determined to improve this skill, so recently I revised my longtime habit of list-making. For years, every morning, I’ve made a list of everything I intend to do on a that day. Now, I include the time of day that I intend to do each thing, so I can leave large gaps of time in between for resting. It doesn’t always work (which is why self-forgiveness is so important), but it is keeping me from cramming too many tasks into a day and that’s definitely helping me to become better at pacing.

4. Earplugs

Let me count the ways my earplugs are indispensable. They mute the sound of the dog barking in the front of the house when I’m trying to rest or nap. They mute the sounds of nighttime: sirens, train whistles, thunder, and student parties. A few years ago, I bought a white noise machine but, to me, the sound wasn’t white noise: it was noise! So, it was back to my earplugs.

I’ve written before about the benefits of practicing mindfulness of sounds. But sometimes, mindfulness of no sounds is what I need, such as when I turn off the lights to go to sleep and there’s a student party going on in the neighborhood (I live in a college town). Students like their music and they like it loud. Before I turn out the lights, the music can make me feel as if I’ve taken up residence in a boom box. With my trusty earplugs, though, the world becomes quiet enough for me to get to sleep.

5. The proper pillow arrangement

I have a multitude of pillow arrangements. I didn’t realize how many until I started preparing this piece. So far, I’ve counted seven:

  • One for sleep
  • One for rest (yes, it’s different than the arrangement for sleep)
  • One for reading
  • One for listening to audiobooks
  • One for watching TV
  • One for meditating
  • One for lying on the bed, working on my computer

My pillows are of all shapes and sizes. Here’s an appreciative shout-out to my husband for his patience in having to part the sea of pillows in order to find a place to sit or lie down on the bed.

6. Not sweating the small stuff

There’s enough unavoidable “sweat” in my life simply from taking care of my body. And so, if I drop a glass and it breaks, I’ve started treating it as small stuff. If I drop one of the expensive china tea cups my mother-in-law gave me when she decided I should have a china tea cup collection: Yup, still small stuff.

“Big stuff” is about other people. It’s about being there for them when they need me, even if I’m feeling particularly sick and out of gas for the day. When it’s big stuff-whether in-person, on the phone, or online-I step up to the plate and give it my best.

7. Slowing down

This is an acquired skill. I write about it in all of my books and in “4 Tips for Slowing Down to Reduce Stress.” I’m surprised at how unaware I can be of how fast I’m moving, even though it’s using up my limited energy stores at breakneck speed.

I’ve also discovered that when I try to do a task in a hurry to save time, it often backfires and winds up taking twice as long because, in my haste, I make mistakes-forget to save a Word Document, spill the milk, break a glass. Even though I know this is not-to-be-sweated-small-stuff, still, if the faster I go, the longer it takes, why not do the task more slowly in the first place?

8. Amazon’s Subscribe and Save (or its equivalent)

Because I’m mostly housebound, I do all my shopping online, most of it from Amazon, where I buy everything from bedding to cocoa to dog food to toilet seats (not to mention copies of my own books!). If there’s an item I need at regular intervals, by “subscribing,” I get a good discount and I know I’ll always have it on hand. I get an email from Amazon when it’s about to be sent, and can even skip a shipment if I don’t need it yet. The online store where I buy supplements has its own version of this, as do many other websites.

9. Spinach

Why is this on my list of indispensables? Do I think I’m Popeye? On the contrary, unlike that muscular fellow, I am not good at eating my vegetables. If my husband isn’t here to cook for me, I tend to skip them altogether. To make up for this, before he leaves town, I have him buy me a tub of triple washed organic spinach. Then, while I’m putting my dinner together, I open the tub and stuff my mouth with raw spinach several times.

By the time my food is on the plate, I figure I’ve had my fair share of greens for the day and consider it a job well done. (This technique works with any number of veggies!)

10. Saying “No”

Before I learned to say “no” as in, “No, I can’t go out to dinner” or “No, you can’t visit for the entire day,” my life was one big push and crash cycle. I still need to work on this because, although I’ve become skilled at saying “no” to others, I’m not always good at saying “no” to myself, as in “No. Stop. You’ve done enough for now!”

 

Bio of Author

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Her newest book is titled How to Live Well with Chronic Pain and Illness: A Mindful Guide. Before becoming ill, Bernhard was a law professor at the University of California, Davis. Her blog “Turning Straw Into Gold” is hosted by Psychology Today online. Visit her website at www.tonibernhard.com.

 

Link to Article

This article is printed with permission from Toni Bernhard. The original article can be read at www.psychologytoday.com/blog/turning-straw-gold/201511/10-indispensables-those-chronic-pain-and-illness.

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Comments (1) -

pat eagleman
9:35 AM on Monday, January 04, 2016

Very good article. Thank you.

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