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Posted on 11. September 2014

Side Effects of IG Therapy: How to Prevent and Manage Them

By Cindy Berry, RN, BSN

This week's IGL Blog is sponsored by NuFACTOR Speciality Pharmacy.

Immune Globulin (IG) therapy is used to treat many different diseases.    Because the drug itself can have many side effects when administered, it is important for patients to understand what to do when facing side effects from therapy to ensure a treatment is well tolerated.

IG therapy can be given in a number of different ways.  Depending on the disease being treated, patients may have a range of therapy from one day a month, to five days a month.  Patients receiving larger doses may experience more side effects.

IG is known to have certain “expected” side effects, which patients can experience during and after their infusions.  Expected effects are those that are the most common, and are considered mild side effects.  They generally do not require medical intervention and can be easily managed.  Although we “expect” some side effects, there are many ways to help decrease the severity and length of side effects by prevention and proper management.

Many physicians prescribe premedications to help decrease side effects.  Usually, Tylenol (500 mg) and Benadryl (25-50 mg) are prescribed to take 30-60 minutes prior to the start of IG therapy.  Taking both of these medications can help decrease infusion related side effects, as well as post-infusion related side effects.  Tylenol helps to prevent low-grade fevers, flu-like symptoms, headaches and muscle spasms, while Benadryl helps decrease the body’s response to the IG antibodies being introduced into a person’s system.  Usually, repeating premedications every 6 hours for 24 hours after the infusion can significantly help reduce most side effects.

Being well hydrated plays an important role when receiving IG therapy.  Patients are encouraged to maintain good hydration status before, during and after their treatment.  Drinking 1-2 liters of fluid a day, starting 24 hours prior to infusion and continuing throughout the infusion, as well as 24 hours post-infusion, is advised for most patients.  Being well hydrated can help decrease headaches, which is one of the most common side effects reported from IG therapy.  Good hydration will also help maintain good urine output, which is important for healthy kidney function.

Patients who have a history of migraines should inform their physician before initiating therapy.  It may be important to take migraine medication prior to treatment to help prevent an onset of migraines.

During an infusion, some patients may experience infusion-related side effects that can be associated with the rate at which the drug is infused.  Usually, if a patient experiences side effects during the infusion, it can be easily managed by the nurse.  Many times, shutting off the drug for a period of time and then slowing the infusion can help prevent further side effects.  Most patients report mild symptoms during the infusion such as chills/rigors, headache, nausea, back pain and/or low grade fever.  If a patient is being infused and experiences any of these side effects, it is important to report this to the nurse at the onset of symptoms.

Following IG therapy, it is important to notify the physician if any serious side effects occur.  These side effects include migraine headaches or severe headaches, tightness in chest, difficulty breathing, development of hives/rash, decreased urine output and/or dark colored urine.

Immune Globulin Therapy Side Effects
When receiving IG therapy – either by IV administration or subcutaneous administration, it is important to understand the difference between side effects that are expected and side effects that are not expected.  Since side effects may have an onset after drug administration, it is important for the patient and/or caregiver to identify when to seek medical attention. 


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Comments (32) -

debbie
4:42 PM on Friday, September 12, 2014

Thank you so much for discussing this topic.  As someone who has worked to try to alleviate side effects from IVIG it was important to review methods to mitigate side effects.  Looking at medications that "do not play well" with IVIG is another suggestion to alleviate side effects.

Laura
12:42 AM on Saturday, September 13, 2014

Unfortunately, I experienced aseptic meningitis with two different IgG replacement therapies - including a switch-up from IVIG to SCIG - three times within six months.

My question is: Now what?

It seems as though IgG replacement simply won't work... and my IgG numbers are crashing. I'm working with my immunologists to working on the next step... but I'd really appreciate some outside advice as well.

Thanks in advance...

Steve
6:21 AM on Saturday, September 13, 2014

I would appreciate knowing what one can do when kidney function appears to be affected with this drug? I have no side effects whatsoever that I am aware of, stay hydrated, receive saline at the same time, yet my kidney function has dropped.  Would a slower rate make a difference? I have been a 5 day every four week recipient, but will be changing to a 3 day every three week dose.

debbie
2:11 PM on Saturday, September 13, 2014

Hi Laura, I can totally understand.  I can give you my experiences in alleviating the aseptic meningitis.  I slowed the rate, I take acetaminophen before as well as a antihistamine.  I have looked at the other medication I take and found it can on its own can cause aseptic meningitis, so I have tried a "sparing technique" with it.  What I ask myself now is managing the side effects of IVIG worth the benefits of the IVIG or is the alternative drug better or worse? Tough questions for sure but I hope you feel better soon.

Laura
6:12 PM on Saturday, September 13, 2014

Debbie - it is so... well, I don't know if *heartening* is the word I would use for a partner in misery... but, it makes me feel less a freak knowing someone else out there has experienced the same dreadful side effects.

I am curious what other medication you take? And what is a "sparing technique"? I am unfamiliar with the term?

I guess I am wondering, too, what options are left when IgG replacement no longer works. I've not seen much out there except bone marrow transplant, and I am scared to pieces of that.

So, what now???

::::many, many hugs::::

Ethel
5:48 AM on Sunday, September 14, 2014

I receive IVIG every week. I receive Tylenol and other medications to reduce any side effects that may occur. I have no side effects. My problem is I don't think that the IVIG is controlling the CIDP. I now am faced with making a decision to stay on just the IVIG, changing to cell cept, or electing to go thru plasmphersis. I am looking for a support group near Baltimore, MD.

Cindi Berry, RN, IgCN and MIchelle Greer RN,MBA
11:53 AM on Tuesday, September 16, 2014

Hi Laura, the literature talks about certain conditions which have a higher potential to affect the central nervous system, and unfortunately immunodeficiency is one of them, resulting in meningitis.  So even though it’s rare, there is a slightly higher chance of aseptic meningitis in people with PI.  Another paper talks about the risk going up with people who have ongoing migraines.  Is this something that applies to you?  If so, discuss with your physician adding migraine medication to your premedications.  This may not prevent aseptic meningitis but can help with severe headaches.  Other medications that can help severe headaches up front are IV steroids as well as IV hydration.

As far as your statement IgG replacement simply won’t work – can you elaborate?  Do you mean because of the side effects, therefore you aren’t really getting a fair chance to see if it works and that is why your IgG levels are still low?  Or are your levels still low in spite of being on IgG replacement?
If you have continued to battle infections despite long-term Ig therapy, there are other things to consider which may affect treatment. Other medications and past medical history are also important pieces of information.  If you have any other information you would like to share, please send on the blog and we will do all we can to help find the answers!

Cindi Berry, RN, IgCN and MIchelle Greer RN,MBA
11:54 AM on Tuesday, September 16, 2014

Hi Steve, All IVIG products contain a black box warning that there is a potential for renal failure.  This was due to one product years ago which contained sucrose.  Years ago, all IVIG products were stabilized with a form of sugar.  That has changed over the last several years.  If your brand contains a form of a sugar, a brand change may help.
In regards to the statement your kidney function has dropped - could you give us more information?

Cindi Berry, RN, IgCN and MIchelle Greer RN,MBA
12:00 PM on Tuesday, September 16, 2014


Hi Debbie, it sounds like you still have some side effects but also it sounds like you feel it might not even be helping you.  What condition do you have that IVIG is treating?  Depending on your diagnosis, there may be other options to discuss with your physician.
As far as managing side effects, since IVIG is a large amount of antibodies being infused over several hours and it is active in your system for quite some time, taking premeds such as Tylenol and Benadryl before the infusion, every 4-6 hours into infusion, and around the clock for 24 hours can help with side effects.  Please consult with your physician prior to changing anything with your therapy.  There are other medications that may help, but need to be discussed with the prescribing MD.

Cindi Berry, RN, IgCN and MIchelle Greer RN,MBA
12:02 PM on Tuesday, September 16, 2014


Hi Ethel, How long have you been on IVIG?  How much do you weigh and what is your weekly dose?  IVIG is dosed by weight and usually people with CIDP start with 2 gm/kg broken up into a few days each month.  Some doctors do break this up into weekly doses like you are receiving.  Some people notice an increase in strength immediately, others require several courses until they notice any improvement.  Once you have improved, your doctor may consider going to a lower maintenance dose and at some point, weaning completely if your condition stays stable.   These are things to discuss with your physician.  If after several months of IVIG there is still no improvement, it maybe be time to consider looking at alternatives.  Please see our blogs entitled Managing IVIG for CIDP and Weaning IVIG for CIDP written by Jonathan Katz, a neuromuscular expert in San Francisco who specializes in diagnosing and treating CIDP.

There is a local chapter of GBS CIDP Foundation International in Baltimore.  Please contact the Foundation for the support group leaders and their contact info.  http://www.gbs-cidp.org/home/get-support/chapters/

debbie
6:50 AM on Wednesday, September 17, 2014

Awesome!!!  I am so impressed you have good support for this blog.  I feel very supported.  Great advice.  I have done all the things you say for dermatomyositis (and a number of other auto immune diseases) and consulted a rheumatologist and neurologist and still side effects persist.  My reading seems to indicate Imuran is causing more problems than the IVIG so I am working with my doctors to "balance" everything to reduce inflammation and remain stable.  This blog helps, thanks again.

Ethel Liivngston
12:47 PM on Wednesday, September 17, 2014

I have been on IVIG since 2006, I weigh 150 and receive 20 grams every week along with  40 mg methyprednisone. My treatment started with 5 consecutive days and the reduced to every 3 weeks. By the last day before the next treatment I could tell that the disease did not go into a full remission. There was a time when my doctor tried to jump start me but because of my age (I am now 82) and the fact that I also had COPD, congestive heart disease, Gerd, bouts of thrush, and irritated bowels, I chose to try infusion of every 2 weeks. This did not help, so it was try every week. This is not working either. I have experienced continued lost of feeling in my feet, legs and hands. I have been told that Cell Cept or plasmphersis is probably my next step. I have checked out both. I do not like the idea of Cell Cept. I have been exposed to blood since I was a child. My brother and my 3 sons were hemophiliacs who ended up with Hepatitis B,C and whatever others there were and HIV. Who knows what black disease is out there for the Cell Cept to awaken.  I do not want to take the chance of a brain infection. My daughter who was to be my caretaker has recently died of cancer. I have no assisted living insurance and I have no one to really care for me if I become disabled. I have tried to find the odds for the effectiveness of either treatment and I have not found any data on it.  I am also trying to find information on changing the recommended doses of IVIG.  I have found that some medications in larger or smaller amounts can be more effective. My medicine drawer will attest to that. If I am able to increase my doses just a small amount, I would like the opportunity to try it that way. All I want is a better quality of life.  

Ethel Liivngston
12:50 PM on Wednesday, September 17, 2014

I FAILED TO MENTION THAT ALL 3 OF MY SONS DIED OF AIDS AND I TOOK CARE OF THEM.

Cindi Berry RN, IgCN, Michelle Greer, RN, MBA
10:54 AM on Monday, September 22, 2014

Ethel, we totally understand your concerns about trying out these new therapies.  There are a lot of things to consider when you have any form of neuropathy.  First of all, neuropathies have many causes, and one of the first things your neurologist will do when you see him or her is spend quite a while doing a thorough history and physical and neurological examination.  This is done to look for the cause of your symptoms.  Causes can include medication side effects, vitamin and/or mineral deficiencies or toxicities, infections and of course an immune response like in CIDP.  Other times, there is no identifiable cause.  This is common and called idiopathic neuropathy.  In this case, there is no treatment, and therapies are aimed at symptom control.  In CIDP and other immune-mediated neuropathies, there are a variety of treatments and people respond differently.  Some people do really well with steroids only, but there are downside to this treatment when used long term.  Some people do well with IVIG and actually go into a remission and can do well on minimal or no medications over time.  But there are also some people who don't do well on any of these treatments and no matter what continue to have symptoms or even progressive symptoms.

The most important thing you can do with your neurologist is communicate on how your are responding to any treatments you are on.  If something works that's great and your doctor needs to know this.  It's as or even more important to tell your doctor when something isn't working.  Especially where IVIG is concerned, there is no sense staying on a medication if it is not helping your symptoms to improve.

In Baltimore, there are many physicians who are specialists in diagnosing and treating neuropathies.  Within the specialty of neurology there are many subspecialties, and one of them is those who specialize in neuropathies. These are known as neuromuscular specialists.  I think your idea of connecting with a local CIDP support group in your area to see what other people are doing and which physicians manage there care is a great one, and I encourage to contact the chapter as soon as you can.  They are a wonderful resource, and their medical advisory board is comprised of neuromuscular experts, some of which are very near to you.
________________________________________
hel

An
10:51 PM on Wednesday, October 01, 2014

Thank you all for sharing your experiences and treatment tips that have really helped to improve my quality of life while I adjust to a PID diagnosis.

Rachel
11:37 AM on Friday, October 10, 2014

Gatorade or Powerade work better than just water for preventing my migraines.  This was suggested by an infusion nurse.

Ibuprofen seems helpful, but you recommend Tylenol.  Any difference?

When switching products I had asceptic mengitis.  My doc didn't seem to know why and his nurse suggested I might have to simply quit treatment altogether.  It would be immensely helpful if immunologists read your tips about side-effects before treatment.

So I did my own research.  Comparing ingredients, my old product was glycine based while the new had proline.  So I asked the pharmacist the name of another product with glycine.  The new worked like a charm.

Also, the problem product bragged it allowed a much faster infusion rate.  But according to a pharmacist specializing in IVIG, a quick rate by itself can cause asceptic meningitis.  Consequently it would seem logical to change only one factor at a time - either the product or the rate or the pre-treatment - in order to be able to pin down the cause of any problems.

Thanks for your clear explanations of how to handle  possible side-effects!

Mary
3:13 PM on Tuesday, October 28, 2014

What happens when a patient can't take the premedications of antihistamines, NSAIDS and steroids both before and after an infusion due to sever disabling dizziness which prevents them from walking and they pass out.  Non of the 15 docotors I have been to have an answer.  I am so frustrated I could spit nails.  I suffered with aseptic meningitis and was left with dizziness that feels like I am in the spin cycle of a washing machine.  someone please help.

Mary
10:14 AM on Monday, November 03, 2014

What is the difference between Aseptic Meningitis and Viral Meningitis?
Does either one cause brain damage, neurological damage, changes in personality and memory? Is either one contagious? If so what precautions should be taken to make certain family members don't contract it. Is using bleach effective in killing all germs from Meningitis and any germs and viruses that could be contracted from Immune Globulin therapy?

Michelle Greer, RN, MBA
11:36 AM on Monday, November 03, 2014

Mary, thank you for your question. Meningitis is inflammation of the lining of the brain.  There are several causes.  Aseptic is considered drug-induced and is not contagious.  Viral meningitis is caused by a virus.  It is contagious.  The type of virus dictates the treatment but normally there is no treatment for either other than rest, etc.  I don't think they can cause brain damage but viral can be fatal if person has a weakened immune system and other pre-existing conditions that put them at higher risk for complications during an illness.

As far as precautions for viral  meningitis, just routine things that you would do to prevent spread of any infection: hand washing, keeping surfaces clean - yes using bleach for this, etc.  As far as prevention of aseptic meningitis with IVIG - there really is nothing that can be done - some people will get it and others won't but it is very rare.

There are no germs or viruses that are spread with use of IVIG.
________________________________________

An
7:05 PM on Wednesday, February 04, 2015

Thank you all for sharing your experiences and knowledge, which really helps newbies like me! Research on PID seems sparse and other than my immunologist, the doctors  I have seen report having had minimal instruction on it in med school, which is not very comforting...  Guess that is why I was diagnosed so late.

I am trying to find out the PID incidence rate within immediate family members, since two of my children have also just been confirmed with specific subclass deficiency in IgG 1 & 3. My grandchildren may also have it, but have been on antibiotics so have not been tested yet. Do other families have multiple members with PID's like us?
Thank you!
An

Mary
3:30 PM on Friday, February 20, 2015

Greetings,
Your trying to find out the incident rate of genetically passing on an immune disorder.
Something that I have not seen any blog address is if the person(s) being testing can emotionally handling possible  bad news of inheriting a genetic disorder such as a primary immune deficiency. I have Common Variable Immune Deficiency & was also diagnosed late which resulted in some organ damage from infections & walking around pregnant without knowing until after my son was born that I had no immunity to measles.  Speaking from my own experience; I wish I would have been tested as a baby and not been told until I was at least 18 or old enough to handle the diagnosis of a life long immune disorder.  I would not have been able to emotionally handle knowing my diagnosis when I was young, but sure wish I would have had the treatment as a baby or even a bone marrow transplant when I was a baby which would have given me a normal immune system.  So while it's important to be tested early to prevent sickness, disruption to school, complications in pregnancy or from working and organ damage its also important to know if the person can handle the news.  In my case some of those around me knew before I did and protected me until they knew I could handle the news.
I am not a doctor or a nurse so I can only speak to what I have read, in some cases there is a genetic link and in other cases the person diagnosed with the immune disorder is the only one in their family that had it.  For me I was the only one on both my Mother and my Father's side that had any immune deficiency.  Others I have learned from reading blogs have had more than one family member with an immune disorder, sometimes a variation of the disorder, sometimes the exact same disorder.  The only way to be safe is to be tested but also important is to give the person being tested LIFELONG coping skills so they don't live in constant fear and depression from the diagnosis.  

Michhelle Greer, RN, MBA
1:16 PM on Monday, February 23, 2015

CVID is typically diagnosed later in life, not because it’s missed since childhood, but because as the immune system develops that is when the defects manifest.  There is a delay in diagnosis and that is bad not because of how people handle the news, but because being sick so much takes its toll on lungs and other organs which then affects life expectancy.  That’s why early diagnosis is key.  So if someone in her family is exhibiting signs then early testing can be implemented and then the outcomes long term are much better.
I will be happy to forward you an article related to genetic testing and CVID.

Elizabeth Robertson
3:26 AM on Sunday, July 19, 2015

I wonder if there are side effects not mentioned in the above article?
I have had IVIG for low antibodies, following cancer treatment, for the last eight months. Last month, after the infusion, I had 24 hrs diahorrea, headache and drenching sweats. I didn't connect the sweats to the infusion at the time as we were having very hot weather. Because of the diahorrea the infusion was slowed to 4 hours instead of the 2-1/2 hours. Now, since the infusion four days ago, I am having drenching sweats, mainly during the day and on exertion. I had a headache which lasted until yesterday but this time no diahorrea. I checked with my GP who is running a lot of blood tests to see if she can pinpoint the cause of the sweats. I am still in remission from my cancer.  Although sweats are not listed as a side effect of IVIG, can you tell me if this is a possibility please.

debbie
8:20 PM on Tuesday, July 21, 2015

Hi Elizabeth, I also get diarrhea, and I would describe them more like hot flashes.  I always liken it to the IVIG "cleaning" out all the "bad" things left behind and turning on or off hormones to help boost the immune system.  There are a number of schools of thought how the IVIG works, so I like to think of it as being able to do everything from cleaning up the bad stuff, and boosting the immune system, hence diarrhea and hot flashes.  I adjust my diet, schedule and clothing to "help" the IVIG work and 8 years later it is still keeping the inflammation down to a "dull roar."   Hope this helps you feel a bit better.

Abbie Cornett
10:16 AM on Friday, July 24, 2015

Hello Elizabeth,  excessive sweating can be caused by a number of different medical conditions but is not a reported side effect of IVIG treatment.  If you need anything else please contact me at anytime.

Abbie Cornett
Patient Advocate

George Dursa
3:28 PM on Sunday, February 28, 2016

Is Ivig Gammagard free of the HIV virus? Is it safe?

Natalie
3:48 PM on Friday, March 11, 2016

Thank you for this article and most excellent posts. For many years I've searched for anyone with similar symptoms to mind by found none. I'm treated with IVIG every 8 weeks for viral syndrome which also keeps at bay the virus that gave me viral encephalitis 7.5 years ago. It flares up whenever there's another ongoing infection in my body and treats me to unpleasant neurological symptoms. But my question is this: does anybody else lose what little energy they have for weeks after their IVIG? I start with little to begin with because of the viral syndrome but after IVIG I feel sick for about five weeks on average. Walking from room to room I am out of breath. Most days I am in bed all day long. Week 5 comes along and the weakness starts to lift. Week 6 hits and I start to have a little energy. By week 7 I am feeling a little lively. By week  8 I am positively spry but it's time for the infusion again. Sigh.  

Mary Ann
7:41 AM on Tuesday, April 12, 2016

Laura ~ I did IVIG for one year with only one "meningitis headache" ~ I premeditated with a medicine for glaucoma patients (to reduce pressure before and after IVIG dose) ~ then I switched to subcutaneous (fatty tissue) home infusion, which has no side effects except a little sweeping and redness at needle sites for about 12 hours post infusion.

Good luck!!!!

Mary Ann
7:42 AM on Tuesday, April 12, 2016

*swelling and redness ~ sorry!

Kathleen A Buschatz
8:59 AM on Tuesday, December 13, 2016

I have CIDP and have been getting IVIG for a little over a year of treatment.  We've changed the IVIG med, added Prednisone 10mg the day before tx, days (2)of tx and the day after.  We've also added Prednisone 10mg every other day.  I have alot of pain and spasms in my feet especially when I ly down, worse at night.  I have been using an electric blanket because as soon as the tx starts I am freezing.  Takes care of it.  I also have had pain in my feet as soon as tx starts especially if I put them up but the Prednisone has helped with that.  I'm going to be talking with my neurologist about possibly increasing the dose of IVIG as someone reccomended but when I read the comments I don't see anyone having the issues that I have.  The diagnosis was confirmed with biopsys and nerve conduction tests.

James
10:51 PM on Thursday, December 29, 2016

Hello my moms had cidp for about 12 years now she is 66 years old. When she first started getting symptoms it came as back pain, then the tingling in the feet and hands. She tried to ivig, plasma, and steriod treatments and nothing has worked to slow down the disease. She is currently bedridden and has to sleep at a incline because her lung muscles are giving out, and she can't breath anymore laying down.  We are going in for one last try of ivig, and now to the question. If ivig did not work for her cipd a few years ago, is there any chance it will work now?

Brian Crook
4:35 PM on Sunday, November 05, 2017

Ethel, I am sorry you have dealt with such loss. I was diagnosed with CIDP and I'm 52. If your situation has not changed you can email me at bkc2063@bellsouth.net.

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