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Posted 3/22/2013 4:14 PM (GMT 0)
has anyone on here done this before?

i saw my doctor today and after talking for a while and reviewing all of my bloodwork, he thinks this would be a good idea to try. i'm really nervous as i know nothing about IVIG and haven't seen it talked about on here. he said it's not approved for use in UC but i have other conditions it is approved for- neuropathy and here's a fun one: hypogammaglobunemia. when i saw a neurologist about a year ago, he never treated me for my neuropathy so my GI now thinks it could kind of be a treatment for my multiple problems.

some of you might remember my post about my constant low hemoglobin and iron numbers. well, my doctor thinks it's from hypogammaglobunemia. i didn't even know such a thing existed but at least i know it was from SOMETHING. i just had a feeling there was a missing link. turns out my IGG2 numbers are very low and they were never tested before until last week when i asked him about my IGG responses (since i'm all into the food testing business). i'm so glad he looked at these numbers since no doctor ever has.

anyway, he said he has a two dozen patients using IVIG therapy and 92% have seen a lot of improvement. he thinks it would be a really helpful treatment for my UC since in studies (animal studies)  it's been shown to stop bleeding and ulcerations from forming. he said it's also VERY beneficial for people who have recurrant c-diff infections. even though i have only had c-diff once, i NEVER want it again so i'm hopeful this will help me with that as well.

just wish me luck. i am thinking maybe this will be my super treatment since it will help with all aspects of my problems. it takes about 6 hours in the infusion center and will be given to me once a month. he said most patients notice a difference after 48 hours and that my neuropathy should go away very quickly (that is a very hard thing to have).

 

Posted 3/22/2013 4:19 PM (GMT 0)
Well if it works for you, it will work for me....keep me posted
Posted 3/22/2013 4:20 PM (GMT 0)
I think it's great. It's very hard to get ivig and very expensive. i do know someone who got remission from IVIG. Your GI actually seems on top of it.
Posted 3/22/2013 4:22 PM (GMT 0)
Your insurance covers it? i heard it is some astronomical figure that makes humira and remicade look dirt cheap... Which is why it is usually only approved by insurance when nothing else can be done for your condition. I guess bit is so lricey becauseit requires thousands of blood donors to make up one infusion... Keep us posted and best of luck!
Posted 3/22/2013 5:24 PM (GMT 0)
There is someone here that uses IVIG for a UC treatment and it works for them. I have had IVIG several times in the past for my last autoimmune disease. It worked wonders for me and also for the person here who was using it for UC. Unfortunately, it is similar to many of the other treatments here as in it works for a few weeks and then wears off. It is very expensive so make sure you know what the bottom line is for your pocket book. If it is successful you will no doubt have to return on a regular basis forever. It has been in the news several years ago for not only bad batches that made people sick but also there were times where it was hard to get due to shortages. If they haven't made a bad batch it is actually relatively safe compared to the UC biologics. It's always a good idea to premedicate with benydryl and tylenol whenever receiving these kinds of things. I think IVIG is a terrific idea and hope it works for you. Let us know. I would use it in a heartbeat but I would not consider either Remicade or Humira unless I was in really bad shape, and if that were the case, I'm hoping I would be smart enough to opt for surgery.
Posted 3/22/2013 6:35 PM (GMT 0)
This sounds really interesting. Will this be covered by your insurance?

Good Luck! Looking forward to your updates on this.
Posted 3/22/2013 6:43 PM (GMT 0)
my GI & I have discussed this, but haven't tried it. It's insanely expensive, & so far, I do alright on the biologics. They use it for lots of auto-immune disorders, so makes sense it would help with UC. On a side note though, these findings really back up my personal theory that UC is auto-immune. I mean, I know that's also the prevailing medical theory too, but I've always had some sort of auto-immune thing going on. One settles down & another one amps right up. Good luck with it! Have you checked with your insurer re. coverage yet? I'm interested to hear how much they'll pay, etc.
Posted 3/22/2013 7:51 PM (GMT 0)
IVIG is not approved for treatment for UC so in about 100% of cases insurance will not cover it for UC. Both bananagirl and the other person on here who have talked about using it for UC were actually approved due to other conditions which were approved for IVIG use so their insurance would cover it. The final cost would be determined by their particular insurance policy. It's cost is about $3000 - $5000 per infusion. When I got it for my first autoimmune disease they would give it to me for 2 - 3 straight days so the bill was close to $10,000 every 4-8 weeks. I do remember a screw up though because I got the infusions in my doctor's office, which was located in the hospital. On one of those times I got the injections my insurance company only paid a small fraction of that because they claimed it was done in my doctor's office and not in the hospital. If it had been "in the hospital" my insurance would have covered it 100%. After that the doctor's office billed it differently as being done in the hospital but I never did get anywhere trying to recoup my losses.
Posted 3/22/2013 7:58 PM (GMT 0)
somedude, haha I know right? i'll let you know when/if I get it done.

killcolitis, I was actually shocked he mentioned it. I had met a lady at the infusion clinic last year who got it done but she wouldn't tell me what for.

probiotic, yeah, I was told it's quite expensive! the doctor sent it to my insurance company today. he said I would be a shoe in due to the other problems I have. the nurse joked that they can get the insurance companies to approve anything with the correct wording... as in, they have no choice except to approve it haha

gary, what did you have it done for? did you have any side effects and how long were you on it? tell me everything!! muahaha

indycat, i'm crossing my fingers!

eva, when I googled IVIG, your old post from 2008 came up! I was hoping you'd respond to this thread.
so what made you/your doctor decide against it? my doc said the main side effect people complain of is headaches, but besides that, you either improve in symptoms or just stay the way you are.
Posted 3/22/2013 10:47 PM (GMT 0)
banana: I had it several years ago for my first autoimmune disease, ITP. ITP is an autoimmune blood disease where your body's immune system attacks and kills your blood platelets. Blood platelets are needed to clot your blood not only from injuries and cuts but it keeps you from having spontaneous bleeding just about anywhere in your body, including your brain. It can be fatal in extreme circumstances. Most people have at least 150,000 platelets in your body and any given time. It gets serious when your count goes below 50,000 and extremely serious if your count goes below 25,000. There were several times where my count had gone down to 4,000. In most cases you get hospitalized with counts less than 20,000. In any event, prednisone is the first line treatment and they started me out at 80mgs per day, and I am an average sized person. Pred did not work at all so I was stuck with it not only not working but having the side effects from it as well. On top of that you can just guess how long it takes to taper down off 80mgs. Next treatment was the IVIG, which was a miracle drug, raising my counts to up over 300,000 in just a few days. Unfortunately, my counts would drop down day by day until I was back down under 20,000 and having to do IVIG again. That brought my counts way up again and then they took my spleen out, telling me that that worked 80% of the time because they believed my platelets were being destroyed in my spleen. Unfortunately, that did not work either as my counts dropped back down low again and did IVIG again and they put me on another drug which actually did work so that was the end of my IVIG for a while. I never really did it on a regularly scheduled pattern over the long term. After several years I learned that allergies were triggering my ITP and after beginning allergy shots my ITP went away and I didn't have to take any meds at all any more. That was over 10 years ago. I never really had any side effects from the IVIG at all except for one time when the nurse had the infusion going into me at too fast of a rate. I started feeling badly and had a headache. I reported it to the nurse during the infusion and she slowed the infusion rate down, which rectified the situation. I never really had any side effects from the IVIG at all other than that. It is actually quite a safe and side effect free med to be on. Way better than anything regarding UC. I very much encourage you to look forward to it and not worry. I wish you the best of luck. Don't forget to find out ahead of time what the cost to you is going to be.
Posted 3/22/2013 10:50 PM (GMT 0)
right, I remember posting about it! Hard to believe it was 5 years ago! Frightening. We never tried it because at the time Remicade was working pretty well. Then, when it failed we switched to Humira, which has been holding me pretty steady. So things have not gotten any worse for me. I'm leery of rocking the boat too, if something is working ok, I'm terrified to drop it! At this point, I belive that if I take a turn for the worse, it would most likely be surgery as opposed to another med. Unless/until IVIG is easier to come by, cheaper, & more widely used I don't know that we'd use it. Probably cyclosporine before that, for UC. In a way, you're "lucky" to have another condition you can say is the reason for getting it- I don't have anything going on right now aside from UC. And when I was considering the IVIG, an old auto-immune disorder I had years ago acted up, so I initially heard about IVIG from my doctor who was treating me for that, not my GI. What a tangled web, eh? Hope it goes thru fine for you- I've not heard of any weird side effects, like the biologics can have.
Posted 3/23/2013 1:00 AM (GMT 0)
gary, i'm glad you were able to find a way to manage your blood counts. that seems like a really hard disease to have. I honestly don't mind having to take it if it means I feel well. like you, my doctor said the main side effect was a headache. as long as it isn't crippling, then i'm sure I can do the treatments. once a month really isn't that much time when you think about it. i'm hoping my insurance covers all of it. I've been very lucky with all of my past treatments being covered.

eva lou, yeah, i'm sure it would be impossible for me to get IVIG without the other things going on in my body. I feel you though. if you are doing well on the biologics, then stick with those. it's great that your old AI condition is okay now. it's hard to have multiple things going on when UC is so difficult to have on its own.
Posted 3/23/2013 1:43 AM (GMT 0)
I have seen a person here who was using it and having great success. The general feedback he/she received was similar to what you've received. I placed this link www.ncbi.nlm.nih.gov/pubmed/1728132 in the treatments post in resources quite a while ago but some said it was pointless to tell people about the treatment because it's too expensive and not readily available. Looking forward to hearing how it works for you!
Posted 3/23/2013 4:20 PM (GMT 0)
 I would definetely try IVIG. My daughter's immunoligist treats his patients that have Uc with IVIG.  He also has had alot of success with it. 

 

Posted 3/23/2013 4:28 PM (GMT 0)
IVIG is something my doctor provides. It is redonkulously expensive.

I find it interesting that it basically recruits the fighters from a broad variety of donor's blood and then gives them to your body. Its like calling in a calvary.

If had an HLA issue I would definitely try IVIG as part of my treatment strategy
http://en.wikipedia.org/wiki/Human_leukocyte_antigen


I dont, so Im hoping I can just talk my body into fighting instead and save the money for a trip when Im better. :)

Post Edited (PathogenKiller) : 3/23/2013 10:35:18 AM (GMT-6)

Posted 3/23/2013 4:31 PM (GMT 0)
Gary have you ever tried Papaya leaf? It is amazing for ITP. If you ever find yourself with an issue again.
Posted 3/23/2013 4:54 PM (GMT 0)
Never heard of that, although I haven't had an ITP issue in over a decade. I'll file that in my memory banks.
Posted 3/23/2013 5:43 PM (GMT 0)
www.amazon.com/Papaya-Leaf-Pawpaw-Regulator-Extract/dp/B005TK5MQI/ref=sr_1_1?ie=UTF8&qid=1364147904&sr=8-1&keywords=papaya+leaf+extract Its really a miraculous supplement for ITP. I first saw it used on a child. I know nothing about this particular product, but you can see just a few reviews so your memory bank file really makes sure to keep it in there ;)

edited link..

Post Edited (PathogenKiller) : 3/24/2013 11:59:12 AM (GMT-6)

Posted 3/24/2013 2:15 AM (GMT 0)
I've never tried it. My younger son has autism(he's very high functioning) and his neuro talked to us about the possibility of doing an IVIG infusion.
Posted 3/24/2013 12:53 PM (GMT 0)
That link didn't work. Are you from another country?
Posted 3/24/2013 3:24 PM (GMT 0)
I have been receiving weekly IVIG infusions for the past 17 years for a neurological condition called Multifocal Motor Neuropathy. I developed Proctitis only a year ago.
Although the IVIG works fantastically at keeping my neuropathy in check, It obviously didn't stop me from developing Proctitis. It is very expensive, probably about £200 to £300 a 100ml bottle (I have 4 bottles every week). Thank goodnes for the NHS here in the UK.
Posted 3/24/2013 6:00 PM (GMT 0)
gary, I fixed it.. sorry about that. Nope. Depends on what country you are in :) Im in the US.
Posted 3/24/2013 8:21 PM (GMT 0)
Holy Papaya! It better work for that price. I am in the US also.
Posted 3/24/2013 10:10 PM (GMT 0)
Gary,
I think its a bargain compared to IVIG ;)
Posted 3/24/2013 10:27 PM (GMT 0)
I can't wait to try it guys. I am hoping my insurance approves it. My neuropathy is just unbearable. I don't even care if it helps my UC or not since my symptoms aren't bad. I've been looking up ways to deal with the neuropathy (even just until/if I can the infusion). I found R- ALA supplementation. I'm seeing a new naturopath on Tuesday so i'm gonna ask him if he sells it.
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