Wednesday, November 13, 2013

FInal thoughts on IVIG...

Thank goodness we don't have anymore medical issues to talk about here!
But with that being said, I wanted to do a final round up all things IVIG.
When I found out I would need weekly IVIG, I had only read two blogs that had gone through IVIG.
One blog had been taken down, and the other blog only received IVIG once a month, at home, and experienced terrible headaches that lasted for days.  
So...let me offer you my take.

For starters, let's define IVIG.
Intravenous Immunoglobulin. 

It is used to treat a variety of diseases.  From the good 'ol Wikipedia
  • Adult HIV
  • Alzheimer's disease
  • Autism
  • Behçet's disease
  • Capillary leak syndrome
  • Chronic fatigue syndrome
  • Clostridium difficile colitis
  • Dermatomyositis and polymyositis
  • Graves' ophthalmopathy
  • Guillain-Barré syndrome
  • Muscular dystrophy
  • Inclusion body myositis
  • Infertility
  • Lambert-Eaton syndrome
  • Lennox-Gastaut
  • Lupus erythematosus
  • Multifocal motor neuropathy
  • Multiple sclerosis
  • Myasthenia gravis
  • Neonatal alloimmune thrombocytopenia
  • Parvovirus B19
  • Pemphigus
  • Post-transfusion purpura
  • Renal transplant rejection
  • Spontaneous abortion/miscarriage
  • Sjogren's Syndrome
  • Stiff person syndrome
  • Opsoclonus myoclonus
  • Severe sepsis and septic shock in critically ill adults
  • Toxic epidermal necrolysis

 I was initially told that I would have to be admitted overnight once a week to receive the IVIG.  
Now, I have a co-insurance, and even though it was ultimately done as an outpatient procedure, the hospital co-insurance is the one that footed the bill. 
I'm not sure why, and I didn't ask questions, but I'm wondering if that had anything to do with why I was told I had to be admitted.
However, I do know that there are several risks to IVIG, many of them sound pretty scary, so maybe admitting me would have been a preemptive measure. 

Again, trusty Wiki, here are the list of possibly side effects 

  • headache
  • dermatitis - usually peeling of the skin of the palms and soles.
  • infection (such as HIV or viral hepatitis) by contaminated blood product; there is also an as yet unknown risk of contracting variant CJD (vCJD) however the process whereby the product is extracted shows that the contaminants are usually not present in the product.
  • pulmonary edema from fluid overload, due to the high colloid oncotic pressure of IVIG
  • allergic/anaphylactic reactions; for example, anaphylactic shock, especially in IgA deficient patients, who by definition can still produce IgG antibodies (IgA deficient patients are more likely to produce IgG against the IVIG administration than normal patients).
  • damage such as hepatitis caused directly by antibodies contained in the pooled IVIG.
  • acute kidney injury
  • venous thrombosis
  • aseptic meningitis
 My doctor was able to get me out of weekly hospital visits, and reasoned that if I ever had an incident where I needed to be admitted, I would then continue admittance for the weekly infusions.  

I made through all 11 weeks with very minor side effects and no hospitalizations.  

So, what side effects did I have?
I had minor itching, soreness at the site that would sometimes span my lower arm, bruising and I think I maybe had a minor headache once.  
Soreness at the site are to be expected because a needle is hanging out in your hand for about 2-4 hours.  
Which brings me to my next point.  
The most difficult part of the IVIG was receiving the IV.  That can hurt like hell if not done right.  It is also no fun requiring multiple attempts.  
I had briefly entertained the idea of getting a port for easy access-but was warned against that since it can cause an infection and once weekly access does not warrant that type of intervention.  My hands were sore, but you can always switch hands, or go into the arm for access.  

What can you expect?
Expect pain from the IV.
Expect for your treatment to last awhile.  
I don't really have a reason to believe that my reason for IVIG warranted such a different dosage than anyone else.  The original dosage was around 6 hours.  When I freaked out at that, and because of my work schedule, it would have meant going for treatment twice a week, they lowered the dosage enough that I could squeeze it all in one time a week.
The cancer center where I got it done was incredibly accommodating.
Because of the limited number of seats-and when chemotherapy is involved, you never know how everyone's treatment will go, they could never say for sure what time I would enter my chair.  
Sometimes I would wait for an hour, and then be there until almost 8pm! On a Friday!!! 
You can't rush IVIG because the way to ensure the least amount of reaction, is to administer as slow as possible.  
When I would start to itch, or get a headache, or have pain in my arm from pushing too much medication too quickly into the site, we would just slow down.  The symptoms would subside almost immediately.
You can also expect to take some benadryl-which helps ease the symptoms.
That also means you will most likely be sleepy.
Thankfully, 4 hours was plenty of time to have a nice snooze. 

My advice?
Plan to be there for awhile-bring a blanket and pillow if you want.  Some magazines, books, your ipod and definitely your phone charger.  I used that time to make phone calls that I just didn't have time for otherwise.  
Bring snacks.  Sometimes the reactions cause you to feel dizzy and you need to eat or drink something. 
The procedure of putting in the IV caused me some dizziness a few times, so I had to drink and eat immediately.  
You could always find me with my iced coffee, snickers and gardetos mix!
Don't judge! 
Ask for administration to be as slow as possible-at least for the first time until you know your reactions.  I eventually learned I could tolerate a fast push of the medication, but it was rather uncomfortable, physically.  
So I always opted for a comfortably slow push.  

All in all, it was not a bad experience once I knew what to expect.
It sometimes hits me that I no longer report on Friday afternoons.
Of course, in my typical fashion, the infusion unit became a second home and I often think of the friends I made there. 
It was also a humbling experience as I was there for a happy occasion, while surrounded by people I would imagine,  in the darkest of times. 

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