I am curious to hear from any of you who are on/ have taken IVIG in the past. My crohn's is in a rocky remission right now, but I want to have a plan for when I am flaring again. Unfortunately, I have tried almost all of the usual IBD drugs with bad reactions, so I am interested in IVIG as a potential treatment option.
Hello #Essieluv, yes IVIG could be a viable treatment option if you have positive reactions to it. Some people don't, and then they need to dig for the reason, but they usually don't without a lot of trial and error. Without knowing all your health issues, it would be hard to tell. Usually, a visit to an immunologist while keeping updated with the Gastro or other doctors becomes necessary to figure it out. I lean towards the thought that Crohn's covers a large spectrum of other diseases with similar symptoms, and that the research to separate them properly is not being done. The main reason might be how difficult it is to figure out which of the many reasons might be the cause of your symptoms. Due to this, many of the treatment options don't work for many people. Because they don't have Crohn's... people with Crohn's can benefit from an immune boost if your immune system is down or damaged, like anyone else would. But, if the cause of the Crohn's is an overactive immune system, you could be throwing gasoline on a fire. So it is very important to check the numbers, look at the red and white cells, what condition they are in, and how your organs and body chemistry are doing. If the body chemistry is off kilter, and they can figure out a reason, then that might cure what is thought to be Crohn's.
Mine turned out to be a genetic mutation in two major areas. Those mutations kept me from processing certain drugs and foods. Instead of breaking them down into the proper components that most people do, mine was turning them into poisons that backed up in my body. So through the knowledge of what was causing the problem, and avoiding it, I am helping to maintain my own health. I will never get better without some form of gene manipulation. And since it knocks out my immune globulin production, I got IVIG for awhile, then had to switch to subcutaneous treatments because the massive once-a-month blast was too hard on my weak system. This knowledge was only possible through constant research and not becoming complacent. It will also be updated as science and medicine find more ways of figuring out what is broken.
The key point is, yesterdays food didn't make me sick, so I keep eating it. Then I eat something else, and I get sick and think it may be the last thing I ate, when it was really the food from yesterday and the day before. By the time it got to my system and started breaking things, I had moved past that and never made the connection. Since it turns out that folic acid is poison for me, and that I cannot remove many medicines from my body at a normal rate, I end up slowly becoming more and more toxic. There is a point where my gut starts to hurt and I am down with a fever. Then the sores and the rest of it all come out, A FLARE! It was the continued folic acid intake and no way for me to remove the toxins. One day I may sweat a little, so it isn't so bad because some of the toxins are gone. The next day I ate an apple, it is good for you they say. And then I am in the hospital, and they swear that an apple can't do that to you. But they only see the symptoms. That I had fava beans for two days before, and that the slow poison of those is killing me, doesn't even register in the doctor's brain.
Now that I know that I can't process many things, and they poison me over time, I need to focus on detoxification and watching very closely what I do eat or the medicines I take.
Boosting my IG with Hizentra only makes sure that I am a little better protected from recurring infections and helps my body to recover from the toxins I have put in there. It is not a cure.
So, if your doctor tries to help you with IG, the purpose is to keep you going, not to cure you. Try very hard to find the cause of your issues, never give up. Treat the cause, help to lower or alleviate symptoms. Maybe one day they will be able to cure us and stop throwing medicine at us?
One thing is for sure, most medicines these days are very potent, and very dangerous. BE SURE about why you are taking them and discuss it with the pharmacist, they know more about drugs than most doctors. Know the possible bad things that they do, and how much damage. While you can sit up and think, do the homework and find the answers. Most doctors are doing nothing for you when you aren't sitting in front of them. They open your file, take a look, and might order some tests. They become very complacent and will continue to treat you as they always have, including dismissing your inquiries as hogwash. Every time I've found something, I hold it up and tell them, this is what I am after, solutions and answers. Not drugs and I'm sorries.
The research people will complain they don't have the funding. The pharmaceutical companies aren't interested in a cure, it would put them out of business. Your doctor is busy and has limited time and resources. The insurance companies would rather not spend a dime. That leaves people like you and me to do our own homework.
It should be a crime, but we spend billions on Ebola help, billions on war, billions on helping rebuild Afgan villages and roads. We take very little time, or resources to figure out things that could save lives and/or reduce the suffering of people. The humanitarian efforts are gone, it is now greed and power that rule the world.
I don't see people doing nationwide Crohn's walks, or Immune challenged walks, or raising money for this kind of research. it is only stop smoking, get fit, stop bullying. The rest of us are supposed to take the rat poison they give us and shut up. So it is up to us to make the effort to be heard, and to promote as much as we can to get funding and attention. Without it we are stuck in an unreal Crohn's world that only treats flares and symptoms.
The Biologics research has been promising. But I don't see a lot in the news about it. There is a Canadian firm that is doing some testing. I would hope that they realize through this testing, who the medicine helps, and why, and who it doesn't and why. Then maybe, maybe, finally they would see that we don't all have Crohn's, and that some of us are just mutants. LOL
I hope my soap box rants aren't too much. I am very frustrated and angry with the whole medical mess and lack of care and treatment we get. They would rather cut us up and resect parts than to actually figure out what is broken. I'm glad that it keeps some of us alive and fighting, but it isn't a solution and never should we stop looking for the right answer.
Tell your doctor you want a MAPP test, find out if you have some gene mutations that are affecting your ability to heal or even poisoning you. The MillenniumPGT test is available in many places right now. Or the UMe123 version. Check for parasites, check for allergies, and keep looking.
IVIG is known to help with autism of all things now. Great news, but why?
So perhaps they will let you try it out if your IG levels are low. It is very expensive, so they are very picky about who gets this and why. Most places are now requiring at least multiple recurring infections that don't respond to antibiotics, and the low immune globulin levels for many months before they will pay the $3,000 to $8,000 per dose (yes, per infusion).
If you are rich, you can bypass the BS and get what you need. If you are poor, they make you jump through flaming hoops and beg. Then there is no guarantee that you get to keep the infusions for any particular length of time. For those who do, lucky you. I've had it taken away until I'm at death's door by the Government. I had to get the inspector general involved and threaten to sue, then they gave it back to me. After that, I was treated like some kind of traitor for fighting for my life.
So, this is the world we live in. We are lucky to get what we get, and lucky to be alive.
