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!

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.