Thanks for the warm welcome. I was diagnosed with CIDP 5 years ago and have has several infusions of IVIG. They don't seem to be lasting as long each time, and I don't know if I'm going into another relapse or the weakness and fatigue is just getting worse. I'm getting along in years, probably one of the seniors in this group, but will know more after another visit with my Dr. this week.
Good morning I have had CIDP for 6 years and had IVIG for 18 months I did not get a lot from it. My doctor told me that not everyone gets good results and a very from patient to patient. Because it is not that good for the kidneys he wanted to stop it and told me there is no cure and we can only treat the symptoms I have CI DP from my knees down in my hands arms and face. I live with the fear of relapse every day of my life because I VIG I did not get the best results I wish you well and this forum has help me good luck to you and I hope everything works out well.
I was surprised to learn that some of you have had CIDP for many years. When I was diagnosed the doctors made it sound like something rare. I have my MD looking into the subcutaneous treatment that I read about here, but at my age (86) they won't due the periserisis, and wouldn't do it even 5 years ago. Finding this site has made things easier for me, I realize that many of you have been suffering much longer, and in much more trouble .All I can say is keep up the support.
I have been doing regular (every 4 weeks) IVIg for almost 3 years now.
IVIg does not work for everyone as it depends on the underlying cause of the problem, but if it does work all it can really do is repair damage that has not gone too far and stop new damage happening. You have to get an adequate dose and the level in your body must be maintained. Have a look at the official product information for information about half-life and dose per Kg (lbs) but remember that everyone is different and for you the half-life might be less or more. So - put all that together and you know how much you should be getting and how often (unless you are a "different" body).
There are other treatment but IVIg is by far the safest with far less nasty side-effects. Some B group vitamin is implicated in some conditions but your doc should be able to get a quick test to check on that. Just remember that excess of some B group vitamins can do more harm than good - get professional (doc) advice.
And CIDP is rare - aren't we lucky!!! You will probably find that if you do some intensive real research into CIDP by reading technical scientific publications (not the usual internet rubbish - use Google Scholar) you might soon know more than the average GP.
Just curious...do you know how much IVIG you are getting during your infusion? I had similar results as you until I was put on the correct dose for my height and weight.
Hello Thanks and a very warm welcome to the forum. I've had CIDP for many years but was only correctly diagnosed 4 or 5 years ago. I did IVIG for over a year it definitely helped by slowing down the progression of the CIDP. There are lots of ups and downs with CIDP so don't get discouraged. Be strong.
Blessings
I get the standard grams/Kg at the fastest recommended rate. No problems except short term mild headache and/or mild nausea on occasion in the hours after. Keep busy and I just forget about it. But in that respect I am one of the lucky ones.
DazedandConfused said:
Hi, FL Girl. Glad to see you are meeting your fellow members and getting some valuable insights!
If I can jump-in with my IVIG rates (I know you asked this of Michael Stark), I'd be glad to share, if you have no objections.
Hello DazedandConfused,
Thank you for your very informative reply.
Since I receive a rather high dose of IVIG; 2 grams/kg of body weight, I can assure you that I appreciate how important it is to follow best practices when administering IVIG. Starting the infusion at a slow rate and gradually increasing it, to avoid undesirable side effects!
I received .75g/kg of weight for a whole year and kept declining. I experienced tremendous muscle wasting and fatigue. Recently I started getting 2g/kg of weight and I am doing amazingly better!
I would like to share a link from the GBS-CIDP foundation about IVIG that I found very informative. The link is for the Summer of 2013 newsletter. The article is on pages 3-4. Enjoy!
http://www.gbs-cidp.org/wp-content/uploads/2013/08/Summer2013Newsletter.pdf
DazedandConfused said:
Hi, FL Girl. Glad to see you are meeting your fellow members and getting some valuable insights!
If I can jump-in with my IVIG rates (I know you asked this of Michael Stark), I'd be glad to share, if you have no objections.
My neuro uses a "Grams per Kilogram" of body weight formula for determining the "correct" IVIg dosage.
I weigh an embarrassing 250 pounds.
Since one pound = 0.4535 kilograms = 113.375 Kilograms. At a 1gram to 1kilogram body weight dose, your weight in kilograms should equal the number of grams of IVIg you are receiving in your infusion(s).
Some doctors use 0.5 grams/kilogram, some doctors use a factor of 1.25 grams/kilogram, etc. It all depends on patient tolerance, side effects, severity of your disease, and even "doctor's preference"!
One key factor in how fast your dose is infused is any underlying medical conditions such as diabetes, allergic reactions to the IVIg, kidney disease, etc. Your body can only "process" just so much extra fluid pumped into the bloodstream at once, and since IVIg is a large protein, too much, too quickly, has been known (in peer reviewed medical literature) to lead to renal failure and other side effects that could require hospitalization.
That's why, (my doctor explained) they start very slow on the infusion pump and check to see if my body is handling the infusion well..then slowly increase up to a maximum of 150ml of IVIg fluid per hour. At 10% dilution, that means at a maximum, I receive 15 grams of IVIg (not fluid volume, but actual IVIg contained within that fluid) per hour.
My infusion nurse, who has been doing IVIg for about 35 years, says the most common "formula" for helping patients tolerate the infusion well is starting very slowly, perhaps at 30ml of IV fluid per hour. Then after 30 minutes, double it to 60ml of fluid per hour (on the pump settings). Check vitals, double again after another 1/2 hour to a maximum of 150ml/hour of IV fluid.
The important thing here is that that the infusion fluid is a 10% dillution, not "pure" IVIg...so there are 10 grams of IVIg in every 100ml of IV bag fluid...
150ml of IVIg fluid per hour is the maximum safe rate according to my doctor, and several infusion nurses I've spoken with. That is in my experience, and is not meant in any way to imply that a faster or slower rate is either "worse or better", but some doctors or infusion centers will push the maximum rate to 200ml/hour, even up to 250ml/hour!
On the serious downside to "fast infusion" of IVIg, every time I hear my neurologist or infusion nurse speaking of someone with acute renal failure or aseptic meningitis, it's because another doctor or an infusion center (anxious to shorten the time someone takes on their infusion table) will pump the IVIg too quickly, and the kidneys basically can "clog up" from the excessive protein load in the blood stream, causing them to shut down or lose much of their function. Renal failure is an emergency requiring immediate hospitalization, so spending an extra couple of hours on the pump, vs. "forcing" the IVIg fluid into the body and risking adverse effects seems to be a no-brainer. Keep it slow!
So, 150ml/hour of a 10% IVIg solution is what I've been told (and have experienced) as the safe maximum dosage rate.
Now, if you need to find out how much actual IVIg you are receiving, you can do a lot of fancy "reverse math", or simply ask your doctor or infusion nurse "What is the number of grams of IVIg I am receiving in every infusion?" Again, not to be confused with the amount of IV fluid that holds the IVIg in suspension so it can be infused.
It was difficult for me to wrap my head around what the pump setting versus the actual amount of IVIg I was receiving...until I asked my infusion nurse to explain how it works!
Most all IVIg (not sub-q, but IV) are at a 10% ratio. That's 10 grams of IVIg into 100ml of IV fluid.
Since I receive 70 grams each infusion day, then the volume infused would be 70 grams x 10ml of fluid, or 700ml of IV fluid in the IV bag.
Instead of guessing, it's easier to ask, but the information here is something that I hear a lot of people on the board mention, and there a lot of people using the infusion pump setting (say, 150ml/hour) as the "amount of IVIg" they are receiving.
If your IVIg brand uses a 10% dilution, just take the pump setting (150ml/hour) and divide by 10. That will tell you how much IVIg product is going into your body per hour. So, take away set-up time, and count only the time you are actually being infused IVIg, and you can 'guesstimate" the number of grams of IVIg you are receiving in any one infusion.
Here's a chart showing which brands use 10% and which use 5%, along with some other valuable information:
http://www.medprorx.com/drug-therapies/ivig-therapy/ivig-comparison...
For example, Octagam generally uses a 5% dilution rate, whereas most other IVIg brands use 10% dilution (see the 3rd column over, in green, which says "% Available". That is the dilution ratio for that particular brand.
All things being equal, it is easier to ask your doctor or infusion therapist how many grams of actual IVIg you are receiving, but I went through all this math because the more informed we are as patients, the more understanding we, as patients, have about what is going into our bodies, the better off we are.
An informed patient is an empowered patient!
That way, if you are, for example, dealing with a "rollercoaster" effect, where your IVIg dose doesn't last until your next infusion, and your symptoms come roaring back too soon, you may wish to discuss either adding another infusion day near the time your symptoms start to return (perhaps a smaller "carry me over" dose"), or asking your doctor to increase the amount of total IVIg you receive during your current infusions.
Let's face it. CIDP is a chronic disease, and IVIg infusions are boring, sometimes dangerous, and just a pain to deal with...but since they slow and sometimes stop the progression of the disease in many patients, they are the best thing we have going for us as patients (along with plasmapheresis, with prednisone coming-in a distant 3rd due to the damage they cause to the body with long-term use).
I hope this has answered some of your questions, and has opened up the "mysteries of the infusion pump settings" vs. the actual amount of IVIg being infused. Thank God I have an infusion nurse who is willing to teach while infusing, so if we ever have to undergo an infusion (in a pinch) by someone other than our usual infusion nurse, then we will know what our settings should be and when.
Be well, and God bless!
FLgirl said:Just curious...do you know how much IVIG you are getting during your infusion? I had similar results as you until I was put on the correct dose for my height and weight.
Thank you DazedandConfused for your detailed and informative post. You are a wealth of information and a very caring person. FLgirl...I received 126g of IVIg every two weeks for over a year. I am 76" tall and weigh 264lbs. At first, the infusions took 8 hours but, when I got used to them, they only took about 5 hours. I took Tylenol and IV Benadryl before the infusions and the Benadryl helped me sleep much of the time. This is just my personal experience. Thanks for the links!
God Bless you and stay strong!
I have been receiving ivig gamma globulin nearly monthly for the last 3 1/2 years. I am 68, and wonder how long I can do this. On the other hand I count my blessings that the treatment works for me and keeps me rather normal for about 23-24 days a month before I began to exhibit symptoms. I find as long as I exercise, walk and don't allow myself to go too long between treatments that I seem to maintain muscle tone and strength. The best. M