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Posted on 9. October 2014

IVIG Side Effects: When to Seek Medical Attention

By Cindy Berry, RN, BSN

This week's IGL blog is sponsored by NuFACTOR Specialty Pharmacy.

Understanding the most common, mild side effects of immune globulin (IG) therapy is important when setting proper expectations during treatment. It is also important to recognize when unexpected side effects occur, and what to do about them.

It's necessary to take measures to minimize side effects when receiving IG therapy. These measures include staying well-hydrated, taking pre-medications as ordered and listening to your body. But, even when diligently taking these measures, unexpected side effects sometimes occur. With the exception of anaphylaxis, most of these side effects generally occur after an infusion, and they are usually considered either moderate or severe. In every instance, they need to be evaluated by a physician, and in some cases, medical intervention is necessary.

Moderate side effects are those that usually affect your daily activities such as going to work, sleeping well, eating and even showering. The most common reported moderate side effect is a headache lasting more than 24 hours with a pain rate of 6 to 8 on a scale of 1 to 10. This means taking medications such as Tylenol or Advil does not help alleviate symptoms. Sometimes, this headache can progress into a more serious headache called aseptic meningitis.

Aseptic meningitis occurs when the IG drug has caused irritation of the meninges in the brain, resulting in symptoms that present like meningitis. This unexpected side effect can occur during an infusion or after an infusion. Patients experience an excruciating headache, as well as neck pain and stiffness, and generally, patients will have severe sensitivity to light. Vomiting is also very common. If these symptoms present, the patient should go to the emergency room for evaluation. Usually, IV hydration, IV steroids, IV antiemetics and IV pain medication are given to help alleviate symptoms. With proper medical intervention, patients usually feel better within 24 to 48 hours.

Renal dysfunction is another unexpected side effect that can be caused by IG therapy. This side effect is more common in patients who are over the age of 65, and who have pre-existing conditions such as hypertension and diabetes. Patients should pay particular attention to any changes in urination, including color changes (dark or amber colored urine can signify a change in kidney function) and a decrease in urine output. If either or both symptoms are experienced, a physician should be notified, and the patient should be evaluated immediately. Since renal dysfunction is a potential serious adverse event, it is important to have periodic renal testing, which is easily accomplished with blood work ordered by a physician.

Thrombolytic events, or clot formation, have been reported in very few cases. Although this is a very uncommon side effect, it is important to be aware of the signs and symptoms. Patients at greatest risk include those with a history of thrombotic events, history of diabetes, advanced age, multiple cardiovascular risk factors, impaired cardiac output and long periods of immobilization. If a clot is formed, this usually occurs after an infusion. Symptoms of a possible thrombolytic event include severe chest pain and difficulty breathing, which could be an indication of a pulmonary embolism or possible myocardial infarction. If severe chest pain is experienced at any time, immediate attention is needed, and 911 should be called.

The final, most serious side effect that is unlikely to occur is anaphylaxis. It is the least-likely serious side effect that can occur. Anaphylaxis usually occurs within the first 15 to 30 minutes of an infusion. It is characterized by a sudden onset of any of the following symptoms: difficulty breathing (chest tightness, bronchospasms, wheezing), changes in the gastrointestinal system (severe cramps, vomiting, diarrhea), cardiovascular changes (low pulse rate, high pule rate, hypotension/shock, chest pain) or skin changes (hives, angioedema, rash). If anaphylaxis is suspected, 911 should be called immediately. If it occurs during your infusion, your nurse will administer emergency medications to help control the symptoms. Medical attention is required and necessary, and 911 should be called despite the administration of emergency medications.

Although the list of unexpected side effects may seem scary, it is important to remember that while most patients will experience mild side effects, they do not typically experience serious ones. In any event, it is always important to understand them and to have your physician's number ready. Always inform your healthcare team of any changes in response to IG therapy.

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.  


Comments (33) -

kim todaro
10:07 PM on Tuesday, February 23, 2016

just started my first round and interested in knowing when peoples side effects started or when if any should I suspect them happen.

kim todaro
10:08 PM on Tuesday, February 23, 2016

just started first IVIG therapy and wanted to know when people should experience side effects if any

8:38 PM on Thursday, March 10, 2016

I have been receiving IVIG for 10 months now.  Over the last 6 months immediately following my treatments, my kidneys began to start hurting.  At first, it was mild & was intermittent. Then with each additional treatment, my kidney pain has increased until this last treatment, my pain became unbearable.  Even my rx pain meds (norco, neurotin & Butrans pain patch) wouldn't even help. It's seems that once the IVIG finally gets out of my system the pain gets better & doesn't happen again until after my next treatment.  I tried getting in with my PC regarding the issue but she encouraged me to call my specialist where I get my treatments. So I called my hematologist/oncologist (which does my IVIG) to report the adverse reactions & spoke to his nurse. She said the dr said to see my PC bc he said IVIG has nothing to do with the kidneys. However, renal impairment/ acute renal failure is listed as one of the adverse effects.  Is there anyone that has had the same problems or acute renal failure due to their IVIG  infusions?  TIA!

1:10 PM on Monday, May 02, 2016

I've just taken my first infusion, so I'm no expert in IVIG side effects.  However, I am veteran chronic illness patient.  And this kind of thing has happened to me before: two doctors referring to each other.  If is very frustrating when my symptoms are serious or very painful. I would make an appointment with my GP and tell him/her my kidneys were hurting but not blame it on the IVIG.  There really is no way to know for sure that the infusion caused it.  You do need to know what is going on, and your GP can run bloodwork to see how you kidneys are functioning and followup from there.  You could also make an appointment to see a urologist without a referral if your insurance allows it.  Finally, I'd walk in to an after hours clinic with the kidney/back pain complaint.  Sometimes trying to diagnose ourselves can deter a health professional.  I hope you find some answers and that your kidneys are fine.  

6:19 PM on Friday, November 11, 2016

I just finished my first full treatment today.  I've had trouble with headache that won't go away (neurologist gave me toradol several times), but I just got home and my concern is that I'm wheezing and coughing a lot and my chest feels tight.  Anyone with similar symptoms?  Any suggestions?  Thanks so much!!

4:40 PM on Friday, February 24, 2017

I just finished my 5th IVIG treatment. I am in bed for about 48 hours with fatigue, back pain and am very emotional...is this normal?

kimberly r todaro
12:54 PM on Thursday, March 09, 2017

I have been doing the IVIG for about 1.5 years now, the side effects like these are typically from NOT taking in enough water before, during and after each infusion. I have just recently started feeling my back hurt after about the 2nd day of the infusion and it is because I was not drinking enough. I asked for 500 ml of water hydration before the infusion and 500 after and this helps me tremendously .....hope this helps , the only side effects that are alarming and you should then seek medical attention is when you have a headache for a longer time, and that it wont go away.

Jill E
5:20 AM on Friday, March 10, 2017

The first treatment of IVIG a year ago I experienced an allergic reaction: ears started closing up, throat tickled and hoarse, head congestion.  The doctor ordered IV 25 mg benadryl/ pepcid(??) immediately and they went away.  When they resumed the treatment, I was just sleepy, but the allergic side effects went away.  I suspect people with symptoms that could be allergy-related (coughing/wheezing/chest tightness) to talk to their doctor about pretreating with some benadryl combo.  I also experience headaches when I don't drink enough water the day before/day of/following day.  I was told that most side effects are due to the impurities in the IVIG, not the IVIG itself.  Hydration helps the body get rid of the impurities which minimizes side effects (and also helps the nurse find a vein!)

4:08 PM on Saturday, April 22, 2017

Andi, I just had my fifth one and am having the same experience. This is my second day and I have literally slept all day and the middle of my back is really hurting.
That seems to have been my only side effect so far, the intense back pain for a few days and some fatigue but not like this. Hope we can both find a solution.  

Ainsley John
9:59 AM on Sunday, June 04, 2017

What’s good for kidney stones lemon juice,  olive oil, and raw apple cider vinegar can be helpful.

10:21 AM on Thursday, July 20, 2017

My daughter has received IVIG, every month for the last 2 years.  She had no reactions to the treatment until the last 3 times.  As she was getting the infusion, she turned bright red, and itchy.  They gave her Benadryl, and the reaction went away.  She received the treatment yesterday, and has had diarrhea since.  Anyone have this reaction, and is there anything I can do?

9:39 AM on Tuesday, July 25, 2017

Emily: I would ask the Dr. if your daughter can be pre-medicated with Tylenol and Benadryl just before starting the infusion.  I've always been premeditated. Also, the more hydrated you are before and after the treatment the better she will do.

Christi Kirkpatrick
10:17 AM on Tuesday, July 25, 2017

I've been getting IVIG treatments for nine months now.  It has given me back my mobility which has been amazing!  My CIDP had gotten to the point that I was in a wheelchair.  Most of the time my main symptoms during treatment are fatigue and flu like symptoms.  Afterward, it's lower back pain and sometimes low grade fever.   The lower back pain & fatigue seem to be very common from talking to others getting the treatment with me.  To help combat the lower back pain my neurologist will give me trigger point injections in my lower back every 4- 6 months.  I also use ice packs in that area when needed.  Hope this helps.  

Andi creed
11:27 AM on Thursday, July 27, 2017

Thanks so much for sharing your experience! My thyroid has been damaged so now on more meds! Also, have H pylori! My fatigue is My biggest struggle...Starting to become depressed and hopeless! But, I'm gonna try getting some exercise...trouble is I develop a daily fever 100+....my immunologist told me I will never make a temp over 101 due to my CVID. Anybody else been told that?

Andrea Montoya
9:40 AM on Monday, September 25, 2017

I have completed 18 cycles of monthly IVIg.  The last 5 have caused really bad abdominal pain and cramping that comes on about 4 hours after the infusion. It makes me shake and double up. I then start burping like crazy and then have a large BM and then diarrhea. The whole episode lasts about 5 hours. Pain meds don't help. I don't eat dairy or or any other foods that cause allergies. Very clean diet. Any one else experience this?

Agi Lebovits
1:16 PM on Friday, October 27, 2017

I've had 3 IVIG's done at the hospital, 3 hrs per day, for 4 days.  I don't remember any other side effects, other than a headache.  I've since had 2 infusions, 1 per month, and will be receiving 4 more in this cycle.  it is now 4 days after infusion, and I am having very bad diarrhea.   waking me during the night, with severe stomach cramping. I don't any fever.  can this be caused by the accumulated infusion?

10:47 PM on Sunday, May 10, 2020

Just had my 4th IVIG. Dull headaches for a few gays after, tinnitus, feel
tired a lot and on and off depression

Karol Johnson
1:40 PM on Saturday, June 20, 2020

I am starting IVIG Tuesday and am a lymphoma cancer survivor from 2012.  For the last 2 1/2 years I have had constant infections such as strep throat, sinus infections, but worst of all crazy bacterial UTI's called ESBL.  I have never had a uti until 2 1/2 years ago and now I suffer with symptoms of one every single day.  Anyway hoping this treatment will give me some quality of life back.  I feel like I have a current uti so wondering if they can start treatment while I have an infection?

3:29 AM on Wednesday, July 15, 2020

For treatment of a neuropathy in my right leg I took two IVIG drips.   First one was a strong dose that caused a severe headache and chills within a day or two.  Then was OK.  After the second lesser dosage I developed a sever rash all over my body that required 3 consecutive steriod dosages, prescription topical creme and about 8 weeks to mostly be gone.   While the IVIG injections definitely helped with my leg/drop foot problems the rash was so detrimental to sleeping and comfort that I'm giving up IVIG.  Back to ibuprofen for me.  Anybody else have similar Rash whose resumed IVIG?  And if so what happened?  

Linda Mountain
7:16 AM on Tuesday, September 01, 2020

Had ivig for 5 months without any side effects. But last one had chills, nausea, headache, extreme fatigue for hours. Am 67, no smoking, drinking, vegan diet. Hoping this was only time for this.

Emily James
11:09 AM on Tuesday, September 01, 2020

Beautiful blog, thank you for sharing!
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Susan Caver
8:41 AM on Thursday, October 29, 2020

I had my first octogam ivig yesterday.  Slight headache and now have muscle pain and rash on neck.  Is this normal?  Next infusion is nov 18th.  Do symptoms change from infusion to infusion?

7:47 PM on Thursday, November 12, 2020

My son 9 years old had his 6th treatment two weeks ago. Since then he's barely able to eat. Has sharp stabbing stomach pains. Can't concentrate can't do his homework cause of the pain. He's basically in bed most of the time doubled over. I mentioned it to his Dr and she said it's not Ivig related. He's never had those issues before starting treatments.

Barbara Burt
1:28 PM on Wednesday, November 18, 2020

I have been receiving IVIG (gammagard) for nearly 2 years. The nurses have to adjust the rate to slow it and that lessens the headache I get. I get 50grams over an 8.5 hour period. And I drink water before, during and after. Hydration is a must. My headache isn't so bad and usually goes away in 24 hours. Hope this helps someone.

3:07 AM on Thursday, December 17, 2020

I just completed my 6th IVIG treatment. Since the 4th one, my pain has become increasingly worse. I’ve had a constant headache with sensitivity to light. I can barely eat because of the pain (9-10 on the pain scale). My entire body hurts, walking is near impossible and my balance is completely off. My fatigue is the worst it’s ever been. I have been advised that my symptoms should improve over time.

4:44 PM on Saturday, January 02, 2021

Susan Caver,

I have been on high dose IvIg for a very rare form of CIDP for 3.5 or 4 years now. Started with doing it once a week, second year went to once every two weeks, third year went to once every three weeks and then in the fourth year I have now gone to a half dose once every two weeks. Almost every infusion I have a slightly different reaction to it, some I can't tell any difference than if they just gave me the same amount of water and I feel fine. Some infusions I get the aches and fever feeling so bad afterward that it lays me out for about 3 days, other ones are somewhere in between. My last infusion I got a bit of skin rash and some small hives as well as a cough and sore throat and itchy eyes all in the last 15 minutes of the 4+ hour infusion. So yes, pretty much every one can be different. My suggestion for anyone having adverse infusion reactions is:
1.) Hydrate better
2.) Slow down the rate of infusion
3.) consider pre-meds.

5:31 PM on Friday, January 08, 2021

I just finished my first infusion which was over two days. I received 95 mg total for autoimmune encephalitis (PANDAS). I was wondering if I should expect side effects to get worse or not at all during recovery. After my first dose (45 mg) yesterday, I felt nauseous but it subsided, had a mild to moderate headache, chills, lack of appetite and fatigue. After my second dose (50 mg) today, I have been experiencing a moderate headache (sinus headache and in the back of my head), body aches (especially in my legs and hips) I've been very hydrated throughout this whole process (I drank water and coconut water religiously before, during, and after infusions and received saline before and after the infusions).  Each day the infusion took about 5 or 6 hours. Also, I was pre-medicated both days with Benadryl, Tylenol (as well as an IV steroid today), but am curious as to when side effects normally subside after receiving IVIG/if I should be concerned about them worsening over time/should I be concerned about contracting Aseptic Meningitis. Thank you! Hope you all are well!

1:22 PM on Monday, February 08, 2021

Grace....see my 7/15/20 post regarding my IVIG.   Your preparation with hydration, benadryl and steriod sounds similar.   My first dose, a big one,  was similar to yours with migraine, severe chills, etc lasting maybe 48 hours.  Second dose was actually easier in those reactions but about a week later I developed a rash from hell that lasted nearly 6 months to completely dissipate.   It was particularly acute on hands and feet where the epidermis turned into a bizarre coating of plastic like skin.  On every part of my body actually except my face with hands and feet worst.   Treated with steriods and topicals.  Steriods were a miracle.   I can live with the neuropathy easier than the rash....IVIG worked but I can't live with the rash.  The rash is rare but other's have the same reaction.    

Susan Caver
8:11 PM on Monday, February 22, 2021

Anyone have a weight gain after octogam?

4:57 PM on Wednesday, March 03, 2021

Has anyone experienced such throbbing pressure in the front ant back old head ? I can’t bend my head back or forward without intense pain

robert t woods
2:15 PM on Thursday, May 27, 2021

I started Gammagard IVIG treatments for Diagnosed CIDP a few months ago. Started with a loaded dose over five day period back in Early Marh 2020 and am now preparing to have my third single dose monthly infusion. I haven't experienced any side effects since the first infusions excepting a headache I would call a 4 out of 10 on the pain scale which cleared up immediately after taking a days worth of tylenol. I think it was due to poor hydration. I am now experiencing a worsening of a mild case of tinnitus that I have lived with for the last 10-12 years. The ringing has intensified significantly in the past couple of weeks and has not subsided. Anyone else experiencing this as a possible side effect? Please advise.  

Marian Chiara
6:31 PM on Monday, July 12, 2021

I had my first five days for five hours each day. Headache, fever, and chills every other day. Ten days after the end of my infusion treatment week, bruises in red/black/purple/blue showed up on both breasts becoming increasingly more painful like pushing the center of a bruise with force but even when no touching is happening. Unable to sleep on stomach. Doctor recommended Benadryl. Will try today.

I have a different chemo infusion tomorrow, so hoping to reduce the pain prior to starting the “drip”.

I will also try to increase my fluid intake as some other patients have recommended. I imagine that will help by hydrating while taking antihistamine.

Thank you all for sharing your experiences as I am just setting out in this new journey for an added treatment regimen.

11:18 PM on Tuesday, July 13, 2021

I just finished my first round of 4-days in a row IVIG for CIDP in my legs/feet. I have spent the last two days in bed, in a very dark as possible room, little bit of diarrhea but had chills and hot flashes. Reading all of these posts helped my (now extremely heightened!) anxiety about the after effects but when should I consider going in to the hospital? I usually get migraine, this hasn’t helped. I’m going to up my water intake as it seems to be helpful. But I can’t sleep, I’m exhausted, my headache has been at a 7 for three days… should I be concerned or just keep taking my 800mlg motrin?

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