Bad Reaction to IVIG
 

I am having some serious side-effects to my first IVIG. Besides the excruciating migraine. After the 5 days of IVIG, I experience extreme weakness, not just muscle weakness, weakness to my very core. I could hardly think. I also experience vertigo, and blood pulsating sound in my ear, skin on extremeities became mottled and I have brown urine. I called the neuro, he is on vacation and talked to the attending of the backup neuro. He ordered a bunch of blood test. All my blood work is off. Here they are:
creatine kinase low 23 normal range 38-234
RDW high, Hematocrit low, MCHC borderline high
WBC high 18.3 (normal 4-11), Neutrophils high 82% (45-75%), 15 tho/ul (normal 2-7.5)
Lymphocytes low 13% (normal 20-47%)
AST high 52 (NORMAL 15-42)
ALT high 56 (normal 14-54)
Bilirubin high 1.4 (normal 0.3-1.2)
Albumin low 3.2 (normal 3.5-4.8)

Neuro is too far away, so he sent me to my GP for an antibiotic - AUgmentin, in case the WBC elevation is an infection from high dose steriods. He reordered blood test and a bunch of new ones for Friday and an ultrasound of the upper abdomen. He also increased my pregnisone back up to 30 and told me to stop taking cholesterol meds.

At the GP my blood pressure was 130/98, pulse 100, respiration 70, oxygen 92 and I had a low grade fever.

Thyroid scan came back with nodules and notable lymph nodes.

Has anybody experience anything like this. I tried to look these up on line and saw a common trend of hemolytic anemia, connective tissue disorder and rhabdomyolysis-severe muscle breakdown.

This disease just keep getting worse. The treatments are worse than the disease.

kathie

so sorry to hear this!!! How many days post IVIG are you now?? Are you still drinking a ton of water?? did they give you some IV fluids??

I have had many of the symptoms when I get aseptic meningitis - a fever as high as 103, increased weakness in some ways- it's as the meningitis makes the IVIG less effective or soemthing the three times i've had it.. I also broke out in a rash on my palms - blistery rash and got strange eczema rash on my legs.. none of that happens anymore

The urine is a new one - are your kidney function tests (bun/creatinine ) normal? I don't know how a wbc reacts to IVIG, much less if you have meningitis (aspeptic), but i would think it would be increased as well.. are you on steriods/prednisone? As that will increase your WBC count quite substainally as well.. do you have signs of infection anywhere (aside from the headache)?

As far as rhabdomyolosis - that usually has a very high cpk (creatinine kinase) level...

so sorry your going through this - that can all be so frustrating!!!!

I am 5 days post-IVIG. I have some mild symptoms of a sinus infections but I am not sure. Neuro wanted to treat it anyway. My instinct tells me there is more than 1 thing going on. I think I may have an autoimmune hemolytic anemia that got aggrevated by the IVIG. I think I may also have Lupus as well. Neuro already has ordered an MRI, I think he is concerned about MS besides the MG. That would also fit.

I had the infusion at home, so additional IV fluids was not possible. I drink more than a half gallon of water every day. I was being weaned off pregnisone. I was down to 20 and they upped back to 30. I have a neuro visit in 2 weeks. I am not sure the IVIG has produced enough benefit for me to go through this again. But I hate to think of the alternatives, longterm steroids or plasmapharesis.

thanks
kathie

IT could be a lot of effects of the rate/aspetic meningits complication.. I for me with the initial loading dose, i had such a bad meningitis that it was hard to tell what part of me may have been helped by the IVIG, and what part was weak from the meningitis part.. the 2nd round of IVIG was a miracle!!! I started to get upset it wasnt' going to work, and then I awoke on day 4, and i felt cured!!! Could actually even smile (which I hadn't been able to do in forever).. we just went at a MUCH slower rate after that first go around.. and had much better luck.. but of course everyone is different! sorry your not feeling well, I hope they figure out something to get you feeling better - and that will work treatment wise!!

Thanks, Your results for the second round of IVIG may give me the courage to try it again. Unfortunately, it is schedule in just over 2 weeks. I hope I recover by then. I am going to ask if they can push IV fluids with the IVIG, maybe that will help.

I am beginning to think most of the symptoms may be aseptic menningitis. How did they treat your aseptic menningitis? Were you hospitalized. I am just surprised that the nurse that was here or the neuro I spoke with, did not mention that. I thought they would put you in the hospital for something like that.

But I also think there is some hemolytic anemia too. My rbc have been heading down for 2 years and my rdw and mchc have been moving up and abnormal for 2 years. the high bilirubin and ast & alt can be due to a hemolytic anemia too. Pernicious anemia runs with other autoimmune diseases like MG. Substitute neuro said if my counts don't improve they were going to send me to a hemotologist.

I already have MG and hypothyroid, both of which make you weak, now anemia too - more weakness.

It looks like they will need to operate on my thyroid, I hope they can do the thymus at the same time. Surgery is what caused my MG to go full-blown 2 years ago.

I think it is going to be a rough summer.
kathie

ugh, i know this summer heat in itself is enough to make it so much more difficult! I literally melt!!!

Yes, I probably drink at least 5 quarts of water on infusion day, plus 300cc iv fluids before and 300cc iv fluids afterwards.. I knwo some people at the infusion center get IV Fluids during the infusion as well..

well, I was already in the hospital when it all happened the first time - it was during my loading dose of IVIG (it was 3 days worth), and it was pretty awful.. I felt like I had the flu x 1000.. horrible body aches, AWFUL headache and temp to 103- i woke up and rang the nurse for motrin.. and then started to throw up and said - no I need something IV.. so they did IV toradol - it was AMAZING!!!! helped a ton.. my spine and head hurt so badly to move - just barely walking so gently on the ground hurt all the way up my spine.. i've had it two times milder - each time with a bit of a stiff neck and throbbing headache.. the last two times I didn't even tell them about it - as the main treatment is just comfort measures and hydration.. So, I took 600mg motrin every six hours, plus or minus tylenol and drank a ton of water.. but did feel weak for a good week or more afterwards due to it

when i was in the hospital they put me in isolation and gave me two iv antibiotics and an antiviral as they had done an LP on me to figure out what I have (i had crashed, coudln't breathe, and barely lift my legs - so I got admitted).. the LP came back half polys (could be bacterial), half lymphs (viral).. so they gave me all of those antibiotics- I think it was so silly, as everyone knew it was aspetic, so no abx are needed! but they waited for the cultures to confirm it..

as far as the anemia goes - most women run a touch anemic.. or at least it's VERY common.. due to menstral issues, diet etc.. I don't know if the bili being elevated to that degree signifies anything or not?!? with the dark urine it may .and with the elevated LFT's... I know if i don't drink enough water the days after IVIG I won't urinate very often, as, it seems to really dry you out (hence, why it can be bad for your kidneys).. I know when I was pregnant and throwing up a ton my LFT's were elevated into the 70's.. but no one knows why i was sooo sick the entire pregnancy either

oh, I know isn't it great how all these things run together! I have a sibling with crohns and I have all the same symptoms - ahh... fun fun! :)

yes, surgeries scare me now, since my last procedure made me go downhill and fast.... but as long as the surgeon/anesthesiologist knows your condition it should be good :)

Kathie,

So sorry you feel badly. However, I suspect you are not reacting to the IVIG as much as the way it was given (too fast.). Also, your hydration was iffy. I need around a gallon a day when getting a big dose like you had X5.

The liver issues are something else. I suspect you may have Tylenol damage. You were taking really large doses early on in the infusion and that coupled with the cholesterol meds may have been too much. It's incredibly easy to take too much Tylenol and the liver does not tolerate it well.

I hope you stay in close touch with your doctors. Feel better soon!

My experience with IVIG is that it takes several consistent doses to start to really show improvement.

I have been receiving IVIG since December. After the initial dose it was decreased to 1g/pound every 4 weeks but that was producing nominal benefit so it was increased to the initial loading dose 2g/pound and changed to every three weeks. After the 2nd higher/more frequent dose I have had a significant improvement (meaning every three weeks I have about 12 days of being at about 50-60% of my old self). Not great but markedly improved from the lower dose or no IVIG. Other than a bad headache the first time I have not had any adverse reactions but I receive 5% Octagam which takes 9 hours to infuse each of two days every three weeks. The nurse has mentioned there is a 10% formula but I think perhaps the reason I have not had problems is due to slower infusion rate so I'd rather not.

I drink LOTS of water and no tylenol at all because my liver cannot tolerate. I had started imuran but had to stop after 3 months 3/25/13 due to liver toxicity. I am now waiting for liver to return to normal and we will try Cellcept.

Also I have discovered I do have multiple serious health problems some of which I didnt even realize as once I got my diagnosis I perceived everything as MG related (i.e. tarsal tunnel, degenerative disc disease)

I'm really sorry to be no help to you here, I have no advice for you as I have never had IVIG but I just wanted to say how sorry I am that you are going through this and I really hope you get some answers as to what exactly is going on here very soon so that you can start to feel better!

:hug:

Another IVIG tidbit: Brand matters! Sometimes awful side effects can occur with one brand and with a change things can go beautifully. Gamunex C is considered the "champagne of IVIG" but there are many other excellent ones out there.

Thanks, they gave me gammagard. Any idea how that rates?
kathie

Kathie 3 weeks ago now I had a 5 day series of Gammaguard and had a bad reaction as well, I ended up in the hospital having blood transfusions. The dark urine is the key, you are most likely having a reaction called hemolysis. I had similar blood work results and what's happing is you are sensitive to one of the antibodies in that batch of IVIG.

The antibodies that you are sensitive to are attacking your red blood cells killing them off, thats why your urine is dark, your bilirubin is up and hematocrit is low. I am shocked with these results that they are giving you just antibiotics. The main issue is your losing red blood cells at a rapid rate and going into hemolytic anemia which results in weakness, tiredness etc. I could hardly stand for about a week and needed 2 transfusions to keep from going into shock.

What is your hemoglobin at? It should be greater than 14.2 that will be an important number, mine went as low as 7.

I would ask the doctor you are able to talk to about hemolysis due to the IVIG it does happen...

Joe, thanks for responding so quickly. I am calling the neuro now.

kathie

Thanks Joe, I was hoping you'd chime in. Interesting about the GammaGard. I've not heard a lot of good things about that one in general. :(

Kathie, I would ask for a haptaglobin and reticulicyte rate, the haptaglobin is a measure of how many 'scavenger' molecules are needed to remove the damaged blood cells, the reticulicyte rate measures how fast you need to regenerate the lost red blood cells.

The haptaglobin rate is key as its a measure of how fast the body needs to clean up dying red blood cells and would be a key indicator of hemolysis.

Joe

JoeNH, :Tip-Hat:

I agree with the others - Brand is Key... I was on one brand (can't remember the name) and had all the bad reactions.. once they switched to Gammunex I have been SOOO much better.. The infusion nurses basically say some of the brands are "dirtier"/ have more by products that can cause ill effects, while the Gammunex is "cleaner".. and causes fewer reactions.. How are you feeling? what did the neuro say?

I just had two days of Ivig on Wednesday and Thursday. From what I was told, I had a hefty dose of gammagard at 70 grams per day. I did okay the first day, but woke up with a headache the next day. As the day wore on, the headache got more severe, so they slowed the rate of infusion. Through the night and all day yesterday, I had a severe headache, and when I moved my head it would intensify. When I tried to touch chin to chest my neck would hurt down my spine to the level of my shoulder blades. Had numerous body aches and had to take narcotic pain reliever to dull it. Had a temp of 99.9, but considering my normal temp is 96.7, that was significant for me. I was told to drink Gatorade and hydrate as much as possible and continue Benadryl and pain meds. The doctor said if i went to the ER, they would only give me fluids and pain meds, and he didnt want to put me in the hospital unless he had to. Glad I stuck it out. This morning, I am not in pain and feel much better.
Now to wait for the good effects. I was told by the pharmacist that gammagard does not contain sucrose, which can be damaging to the kidneys.

I am at home and resting. I still feel very weak, I have a bad headache and a lot of muscle pain. Urine color is lighter but still tea colored.

Attending of substitute neuro called late yesterday. She only had a verbal read on the abdominal ultrasound. There were abnormalities of the liver and pancreas. He did not have a read on the spleen. Blood work will not be back until Monday. So I am sitting tight, resting until Monday. I ordered a combo oxygen, blood pressure, pulse meter online so I can monitor myself. I can tell my heart rate is fast with occasional chest discomfort but not as bad as it was, so I think I am improving. I am just concerned at how low my hematocrit has gone.

I don't think I will go through IVIG again. I am pushing for a Thymectomy as soon as possible. They upped my pregnisone to 30mg a day until I see the neuro in 2 weeks.

Thanks everyone with getting back so quickly. I was pinning all my hopes on IVIG since my MG has gotten worse, so I am very down right now.
kathie

Have you tried plasmapheresis yet? The only reason I went back to Ivig was that I was having such difficulty with everyone getting on the same page so I could get it started back. My neuro ordered it, but the nephrologist staff people do not want to be bothered with me as they have plenty of kidney patients to keep them busy.
Plasmapheresis made me much better, it's just being able to get it is the problem for me.

No, I have not tried plasmapharesis yet. My next IVIG is scheduled in 2 weeks and I want it cancelled. I want to try plasmapharesis to hold me over until I can get a thymectomy. I am feeling so weak, even a walk to the mailbox (10 yards) makes me feel ill. I need some fast relief.

kathie

I would think with the kind of reaction you had, which sounds pretty serious, they wouldn't want to try it again.

I cancelled the IVIG that was scheduled for 2 weeks. I called my GP to see if he could release my blood results online. But he said since he did not ordered them, he would not release them. So I called the neuro office. The office assistant said the neuro would see them when he gets back from vacation on Wednesday. I asked to move up my appointment, they said no.

So I have a bunch of abnormal blood results, that were so bad they needed them repeated in 3 days. Now no one will look at them or give me results for a week. I still feel very bad. Did I mention I fell down the stairs on Sunday. Luckily it was only a few steps. I am so disgusted.

I do not know what to do to get comprehensive medical care.
kathie

Kathie, I am so sorry for what you are going through. Believe me, I totally understand.
My doctor, that ordered my Ivig, called me personally this morning to see if I was over my reaction yet, and I was so shocked, I almost hit the floor in disbelief.
I have been so frustrated trying to get plasmapheresis, and there is such a breakdown in communication and I am thinking even caring about those of us suffering, that nobody takes responsibility anymore. He only ordered the Ivig to try because I couldn't seem to get plasmapheresis and could not get past the office staff at either the neuro or the nephrologist office.
Did they even give you an order to get the tests repeated, or is that something you have to wrangle out of them as well?
I have been left with a catheter in my jugular vein for two months and no one will take responsibility for that either.
I will think long and hard before I will allow anyone to put something in my body and just go their merry way.
I feel so bad for you because I know how it feels.

Good Grief!!! Limpy
 

Limpy, I really need to check my understanding. :confused: Are you saying that you have had a catheter in your neck, and have not received plasmapheresis for two months? And if so, is anyone at the hospital taking care of the line--draining/cleaning?

Ding ding ding! Yes, you are right. I practically had to walk over hot coals to get them to change the dressing. I was told by the nephrologist's nurse that it did not need to be flushed, even if I had no treatment. The longest period of time that I have found between flushes of an unused catheter is one month. It is a double lumen tunneled catheter packed with heparin. But not to worry, because I let my Ivig nurse know that I had it and she came prepared to flush it and change the caps.
The stuff she drew out of it was nasty and she couldn't believe it had gone that long either. She flushed and refilled it with fresh heparin, so I am good for a while now.
She even said that if I could get a Dr's order she would come to the house and change the dressing! It's a shame I had to go out of state to get proper treatment.
My neuro told me not to wait till my next appointment before calling if I needed him. I have done everything short of sending up smoke signals to get in touch with him so I could get plasma, but had to get my neuro at UF to order Ivig instead. And he managed to call and check on me??? Sorry for ranting again, but it is hard not to.

Limpy, I am so sorry you are having such issues too! But that makes me think twice about trying plasmapharesis!

I am sitting tight for a thymectomy and not letting them try anything else. There is on one to take care of you if something goes wrong. The office tells me, if you feel worse, go the ER. I am a single parent and I cannot go the ER. Who will take care of my teenage daughter! Is the ER the only place you can get medical treatment? I thought that was what the doctors who know your history and treatment were suppose to do.

If I knew a place that I could get the right treatment, I would move there. I am going to have to be dealing with this for the rest of my life and I cannot tolerate this kind of treatment. I will not survive it. And I have no advocate to go with me to help. I am on my own.

This disease is very isolating. My own GP wont even help me.
kathie

You can get a temporary cath put in for plasmapheresis that they do in the hospital then they take it out when your done. I had this one put in this time to be able to have it outpatient. I think that is where I made my mistake. Out of sight out of mind. I have been told to go to the ER, too. But what are they gonna do?
Tell you to follow up with your doctor. I have been tempted to just drop by there and tell him what is going on, that he probably has no clue about.
I feel exactly the same as you do, Kathie, and I am so sorry for you. At least I don't have kids at home to worry about.
I have an appoint,ment in the morning so maybe, I say with my hopeful voice, I will get it all sorted out then.
I will be thinking of you and saying a prayer for you and me.

Did I win anything? :D

I find your situation, unique, to say the least! I'm relieved to hear that the IVIG nurse took care of the line for you. Heparin hasn't been used here for quite some time. Instead, they are using Sodium Citrate--just an FYI in case they switch it on you. I cared for my own lines at home during treatments. You'll want to watch closely for infection.

I take little advice from a nurse/girl "at the front desk" unless he/she is a nurse practitioner, or is passing on information from my physician, or is one the brilliant nursing staff here, at the Apheresis Unit.

And as far as I'm concerned, whomever ordered the line for you is responsible!

*Note to Canadians--plasmapheresis is given only pre-thymectomy, or to brittle myasthenics. In other words, it's to keep one out of the hospital, and ICU, so generally speaking, if you are not experiencing concerning symptoms, you aren't a candidate. There are always risks involved with this treatment, and it's far too costly to use as a "feel better."

Kathie, :) I am interested to know why you cancelled.

Kathie,

Unfortunately, the ER is sometimes needed for things to be sorted properly and sadly, to be taken more seriously. The fact that you are staying home, in a way says, "it's really no big deal." Health care, when as seriously ill as we are, is something of a game, and you will need to learn to play it in order to get the proper care. Sad but true--and will get worse with time, I'm afraid.

As for your daughter, I know you've said she has 5 families who wanted to take her with them on their vacations. Surely one of them, or someone else (as it sounds like she has lots of friends), could let her bunk at their house for a few days if you become hospitalized. If nothing else, she could stay in your room with you (fudge on her age if need be!)

Now, about the thymectomy. Right now you are not a good candidate for the surgery, as you obviously have either a bleeding or liver issue, neither one of which would be happy with a major surgery happening. So that is likely going to be put on the back burner at the very least. You will have to be in much more stable condition for that.

Finally, the PLEX.... It is also VERY hard on the body, and you have to have good blood counts and a relatively healthy body in general to do that, too, as blood cells do get damaged during the whole "cleaning" process. You may have to have more testing done to determine what is going on with you now before they put you on such an invasive therapy. Also, you may need to consider that they may want you inpatient for it...which would be anywhere from 5-10 days in the hospital.

In any case, it would be good for you to round up support and care for your daughter. Any of the above scenarios will require it.

I would also suggest looking around for a new PCP--one who will work more closely with you and your neuro, like a team. The whole "Not gonna show the blood test reports" just BLOWS...I would be furious and probably would latch on like a pit bull until I got them (but that's just me.)

Hope you are feeling some better today. Hang in there!

Thanks so much. I guess I may need to accept the ER as a reality. The question is which ER - local which may mistreat my IVIG, or a trip down to the city.

But I began to feel very ill/weak at work today. I got fed up with the whole process. I called my GP and insisted on appointment They were more receptive this time. I think they saw my condition and felt sorry for me. I think crying helped. They did review my blood work. Liver enzymes are down to normal. Wbc are coming down towards towards normal, still high.

Albumin abnormal low and getting worse. All electrolytes are abnormally low. Hemoglobin is getting worse/lower (11). My CMV titer was positive. COuld this be due to the IVIG or do I really have an innumocompromised infection from the pregnisone?

I got referral for a PT evaluations for falling again, referral for a gastroenterologist. They are retesting the blood work this week to see if it is getting worse again. They will call the neuro to try and coordinate care and see what else they can do for me and what is related to MG or treatment and what is not.

So I guess I have anemia due to malabsortion, perhaps with a G bleed. I agree I need to get that under control. I am in no shape for surgery. Anything they do I will insist on being done as an inpatient so I can get proper care. I am very afraid of the ER, I hear so many horror stories from MGers.
Thanks so much for your frank evaluation,
kathie

Glad some of your bloodwork is improving.. interesting about the CMV titer.. when I was hospitalized when I crashed 2 years ago my CMV titer was also positive (it had been negative months earlier, as they tested it at the end of my pregnancy).. I think I Had already had one dose of the IVIG when they drew the blood, but I was so sick I'm not sure.. anyhow,, I have malabsorption/GI symptoms too - so it's still a big mystery.. just thought it was interesting about the CMV thing.. what did your dr's say about it?

Hope your starting to feel a little better- hows your headache?

Kathy the hemoglobin being at 11 is why you are so tired, was it low anytime In the past (before the IVIG) ? You effectively are running around with 40% less blood (it should be about 15 to 16), that will exhaust anyone, when I was at 11 2 weeks ago I felt like I was made out of mud...

The IVIG antibodies stay in your system about 35 days. In my case it took 30 days for the hemoglobin to start returning to normal. Kathie I would see if you can talk to a hematologist. Hemolysis is so rare few doctors besides a hematologist know what to look for. Why do they suspect a GI bleed? Are there signs or symptoms of that?

Joe

Kathie

Just wanted to add my support and good wishes. So sorry for what you are going through.
You are in my prayers. Good luck
Sandy:hug:

Just had more blood work drawn again this morning. I should have the results on Monday. I think I will be heading to a hematologist. I just got the manual CBC differential and it said there were a moderate amount of spherocytes. I looked that up and it means an auto-immune hemolytic anemia. Finally something someone will treat hopefully. I still have not had a call back from the neurologist. Even the GP did not mention anything about the spherocytes. I will call on Monday and get them to release the blood test and get a referral to a hematologist. If the hemoglobin is under 10, I will go to the ER.

Nobody is treating the CMV and I am not sure if I should be worried. CMV is only a concern in pregnant women or immunosuppressed patients like me on high dose steroids. It is suppose to be treated by anti-viral meds in immuno-compromised patients. I will pursue that on Monday too.

Just for reference when you have a bad reaction to IVIG, who treats the problem, your GP or the neuro that ordered the IVIG?

Besides Joe, has anyone developed a hemolytic anemia?

thanks
kathie

Kathy, Every time I think I'm getting close to having some understanding of the American health system, I get lost again. Will you help me with this? My question is: Why are you or others, having to orchestrate
your own appointments with specialists? Doesn't the PCP do this for you? As well, doesn't the PCP go over your test results with you?

Thanks in advance!! :)

Not in the american health care system. Doctors do not like to tread on each other territory. The GP position is, the doctor who ordered the test should monitor the results, informed the patient and treat or refer the patient.

The attending of the substitute neuro ordered the tests. All the tests came back abnormal. I can not get an answer from the substitute attending, the substitute neuro or the neuro who is now back from vacation. The GP said he is unqualified to deal with the complicated case and does not know how to treat reactions to IVIG. So when I wrangled an appointment with the GP and cried that all my tests are abnormal, I am so weak I fell down the stairs, they finally looked at the blood work and issued referrals to specialist - Physical therapy evaluation for in home safety, gastroenterologist for the chronic diarrhea and another endocrinologist and local neurologist to be the go-between. Of course I am on the waiting list for 1-2 month for some of these specialist, even with MG, abnormal blood results and nodules on my thyroid.

I know the GP is thinking GI bleed, but I am almost certain it is an auto-immune hemolytic anemia. My only concern is, it is more than a week since the last blood test and how much farther has my hemoglobin dropped.

kathie

You probably need to consider getting a new PCP. I feel certain that mine would have done better.

Thanks, Kathie, I really appreciate that! ..."Doctors do not like to tread on each other's territory!" Actually, I think that's global. :D