Sunday, October 14, 2018

IVIG and MS - Plasma for one

I recently had an IVIG infusion and got a lot of questions about what IVIG is and how it is used in relation to Multiple Sclerosis.

Great questions. 

I'm not entirely savvy on IVIG usage medically, but I can give a non-technical little overview.  With the help of google and some medical documents of course.

So first, why we choose to use IVIG.  In my DMD history I've used Rebif, Tysabri, Tecfidera, and Rituxan.  I have also used Plasmapheresis as a treatment.  Rituxan was my latest DMD and I really did give it a good try.  My body has a hard time with all drugs but rituxan, damn, it was brutal.  Quality of life was not worth it.  And, we couldnt confirm if it was or was not working.  It was an easy decision for me to be like "no thank you, no more".

I went with no DMD medicine or treatments for 10 months and though I wouldve loved to go further, my doctors advised me to consider a treatment.  I agreed.

I received IVIG at my MS clinic's infusion center at a hospital in downtown Pittsburgh.  The nurses were fabulous and got a IV line in one try. I love nurses!

So here we are: IVIG.  IVIG, immunoglobulin therapy, is a blood product of plasma serum collected from blood donors.  In the average dosage, anywhere from 1000-15,000 donor's plasma are used per batch.  (THANK YOU TO ALL DONORS).  It's a clear product and is given intravenously (through an IV).  The infusion can take anywhere from a 2-8 hours, depending on how much plasma serum someone is receiving. 

IVIG's on label use is for people with immune deficiencies.  The plasma is full of immunoglobulins, that's basically what the plasma is; these fight off germs and viruses (they are the antibodies).  If you want a good google search, look up immunoglobulins - good stuff.

This was one of the reasons why I was cool with IVIG - after a recent check of my immunoglobulins, they all came back low, some extremely low.  Anything to help with the fight against germs I am a-ok with.

How is IVIG used with regards to MS?  It's an off-label use; the bummer about this means there is little study done on the effectiveness of the drug or more specially, HOW it works.  The hope in using IVIG is the same hope put in to a DMD: slow the progression, reduce long term disability effects, and reduce symptoms.  It is not commonly used in a relapse in the same was as steroids or even plasmapheresis is used; it is used more specifically in treatment. 

How it does this, again, isnt necessarily determined in scientific fact.  The theory is that since IVIG is full of health immunoglobulins, it can help fight off a disease of the immune system, such as MS.  In a sense, override the damaged cells of the immune system that are causing the attack on the myelin sheath. 

And that's about it.  It's pretty basic at it's core: it's a plasma based serum of healthy immunoglobulins intravenously administered in hopes of boosting the immune system to fight germs and disease. 

Side effects are mild but still, damn, not cute.  The most common is a headache (similar to an after lumbar puncture spinal headache).  Drinking lots of fluids can help to bring this headache down (or so they say.  I drank a lot of water and electrolytes and I was down for the count.  Thinking next time I'd like the IVIG to be administered with a drip of saline to hopefully help).  You can also have flu like symptoms and infusion site reactions.  The actual consistency of the plasma is very thick and can be harsh on your kidneys and veins.  This is why drinking water is so important (keep it all moving) and I've also added a few supplements to help in kidney health. 

the puppies were so cute and didnt leave my side (heart)

I highly encourage others to look in to googling IVIG themselves to learn more.  I've heard a lot of people have great success with IVIG and it's good to know your options for future usage if you get at a crossroad. 

It is a limited resource so use with care.  So many donors are needed for one administration and I'm SO THANKFUL for all who donate their healthy blood for this.  So so thankful.  And if you are healthy, maybe think about donating.  I've heard they give out cookies. (:

I'll keep you posted on the IVIG journey.  I'll be receiving it every 4 weeks.  They do say it can take a few months before any effects are felt.  Hopefully this brings some relief because it's been a tough year.  Come on plasma!!!