Share Facebook


05-11-2014, 08:58 PM   #1
Essieluv
Senior Member
 
Essieluv's Avatar
Ivig?

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.
__________________
Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
05-11-2014, 09:04 PM   #2
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Tagging Durwardian because he has exp with this. He started a support group here http://www.crohnsforum.com/showthread.php?t=60644
05-11-2014, 09:10 PM   #3
Essieluv
Senior Member
 
Essieluv's Avatar
Oh cool, I'll check it out. Thanks!
11-21-2014, 07:41 PM   #4
durwardian
Senior Member
 
durwardian's Avatar
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.
11-21-2014, 10:34 PM   #5
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
There are couple of parents with kids using Ivig I believe.

Paging Malgrave and DanceMom
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
11-22-2014, 06:19 AM   #6
sue2003
I took ivig years ago with no previous lab tests to confirm that I need it. It was just a last hope. I was better for only a weak or so then its effect disappeared. Now after reading what duwardian has said, I am convinced that I should do genetic test like UME 123 . But the test done in only USA. What about patients with CD not living in USA , how can they do the genetic test.?
11-22-2014, 01:26 PM   #7
durwardian
Senior Member
 
durwardian's Avatar
I took ivig years ago with no previous lab tests to confirm that I need it. It was just a last hope. I was better for only a weak or so then its effect disappeared. Now after reading what duwardian has said, I am convinced that I should do genetic test like UME 123 . But the test done in only USA. What about patients with CD not living in USA , how can they do the genetic test.?
What country are you located in?
11-22-2014, 03:41 PM   #8
sue2003
Egypt
11-22-2014, 04:07 PM   #9
durwardian
Senior Member
 
durwardian's Avatar
Let me look into that. Are you still teaching genetics?
11-22-2014, 04:46 PM   #10
sue2003
Yes I still do. Thanks you very much
11-22-2014, 05:22 PM   #11
DanceMom
Senior Member
My daughter is on IVIG every 4 weeks for an immune deficiency (initially diagnosed as Crohn's). It has helped tremendously. Due to the cost of therapy, many boxes must be checked before an insurance company will agree to pay.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
11-22-2014, 06:34 PM   #12
durwardian
Senior Member
 
durwardian's Avatar
#sue2003

I was also treated like I have Crohn's, IBD, Colitis, and many other diseases. By following the process back to the DNA, the mutations were found at VAL158MET, reduced plasma levels of CYP2C19, C677T mutation, increased plasma of UGT2B15 substrate. This is probably the cause of my immune system collapse, my hemolytic anemia, and the inflammation. This should also cause damage to the protective sheath around tendons, bones, veins, and organs. The breakdown of the intestinal protective lining is also obviously a product of this. I produce way too much toxins, and many of the foods i eat, and the medications I take, can cause more toxins, since they cannot be broken down into the proper components needed for nutritional value. The garbage disposal system is broken at a very deep level. Detoxification and stopping the input problem is key. Repairing the damage is key. Shutting down the immune response is irresponsible in my book, unless it is to save a life. But at the same time, the source for the problems needs to be found as quickly as possible. My main source appears to be the C677T mutation, which leaves me without the ability to process folic acid. We are currently attempting to supplement with Methylfolate versions to see if the process can be bypassed. To support this, i avoid anything high in folic acid. So far it causes intense migrains and dizzy spells. I am still getting once per week infusions of Hizentra, which is human blood plasma injected under the skin for slow and steady absorption. My immunologist doubts that I will ever be able to come off this treatment. I believe that is because they waited too long to test for broken genetics and the damage to the body and organs is done. We will see how it goes.
11-22-2014, 06:39 PM   #13
LodgeLady
Senior Member
 
LodgeLady's Avatar
 
Join Date: Sep 2013
Location: Westminster, Maryland
I am IGG deficient. I have IGG subclass deficiencies as well. My Crohns inflammation is very mild. Allergist feels my immunodeficiency could definitely be contributing to my Crohns symptoms. However because I am IGA deficient at times IVIG may be contraindicated.

I am trying Enteragam. It is bovine immunoglobulins that you drink. Brand new on the market. I'm just one week into it along with a month course of Prednisone. Here's hoping it works. So far so good.
__________________

Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

11-23-2014, 11:46 AM   #14
sue2003
#durwardin
Thank you so much for sharing your results. I am so interested to know my genetic mutations. I know for sure ( from a study I did for different reason as my sample was a control sample) that I have C677T mutation!. We studied this mutation as a potential factor in congenital heart,thrombosis and neural tube defects but never thought of it that way you mentioned. I didnt have any idea about its role in migrain for example. I have attacks of severe migrains and cluster headaches that lasts for days. I ll be very grateful if you can explain for me this more. At least I know that I have this mutation.
11-23-2014, 11:53 AM   #15
durwardian
Senior Member
 
durwardian's Avatar
Do you also have genome family T/T?
11-23-2014, 11:54 AM   #16
sue2003
No pnly heteroxygous C/T
11-23-2014, 11:55 AM   #17
sue2003
*only
11-23-2014, 11:57 AM   #18
durwardian
Senior Member
 
durwardian's Avatar
http://mthfr.net/mthfr-c677t-mutatio...ol/2012/02/24/
11-23-2014, 12:19 PM   #19
durwardian
Senior Member
 
durwardian's Avatar
http://www.ncbi.nlm.nih.gov/m/pubmed/24794492/
11-23-2014, 02:01 PM   #20
durwardian
Senior Member
 
durwardian's Avatar
http://geneticgenie.org/methylation-analysis-example/
11-23-2014, 02:12 PM   #21
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Hey guys I also have the +/+ C677T mutation. Currently on Deplin 15mg for it and changed my multi to one with methylfolate and methylcobalamin. Genetic genie is great as is the $20 app on Mthfrsupport. Honestly I have no regrets with my purchase since it's very informative.
11-23-2014, 02:19 PM   #22
durwardian
Senior Member
 
durwardian's Avatar
I wouldn't be surprised if most patients have metabolic issues directly caused by genetic mutation. And that Crohn's, IBD, Colitis, and many more issues are the end result of it.
11-23-2014, 02:22 PM   #23
durwardian
Senior Member
 
durwardian's Avatar
My insurance, once again a Blue Cross company, is refusing Deplin treatment, like they did IG infusions and every medication or treatment. Been fighting theem for months. I am building up to a major lawsuit to force them to be fair. So far they do nothing but block my health and wellness.
11-23-2014, 02:46 PM   #24
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
They won't cover it for me either but I go through the supplier so I get it at cost which is still expensive. There are generic types that I want to see if they will cover like Virtus. If not I'll either continue to spend on Deplin or just buy methylfolate at the vitamin store.
11-23-2014, 03:35 PM   #25
durwardian
Senior Member
 
durwardian's Avatar
http://www.dramyyasko.com/resources/...ery/chapter-2/

This is a very well written piece of work. Look specifically at the methylation cycle and highway accident section.
It explains a lot about the complicated pathways that in turn, could add to or be the cause of our issues. With very sound advice for treatments.
11-23-2014, 03:48 PM   #26
durwardian
Senior Member
 
durwardian's Avatar
Here's a quote from it...
Methylation is central to such critical reactions in the body as:

Repairing and building RNA and DNA
Immune function (how your body responds to and fights infection)
Digestive Issues
DNA silencing
Neurotransmitter balance
Metal Detoxification
Inflammation
Membrane fluidity
Energy production
Protein activity
Myelination
Cancer prevention

Because it’s involved in so many processes, inefficient function or mutations along the methylation pathway can result in a wide range of conditions, including the following:

Aging
Allergic reactions
Alzheimer’s
Anxiety
Arthritis
Autism
Bipolar disorder
Bowel dysfunction
Cancer
CFS/FM
Chronic bacterial infections
Chronic viral infections
Cytoskeletal breakdown
Diabetes
Down’s syndrome
Heart disease
Herpes
Huntington’s disease
Language and cognition impairment
Leaky gut
Leaky gut syndrome
Metal toxicity
Miscarriage
Mitochondrial disease
Neural tube defects
Pneumonia
Psoriasis
Renal failure
Rett’s syndrome
Schizophrenia
Seizures
Sleep disorders
Systemic Lupus Erythematosus (SLE)
Thyroid dysfunction

To name just a few...
Reply

Thread Tools


All times are GMT -5. The time now is 04:32 PM.
Copyright 2006-2017 Crohnsforum.com