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Good news re:IVIG

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Ulcerative Colitis
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Posted 5/2/2014 11:39 PM (GMT 0)
As some of you know I've recently come out of hospital after a bad flare. I'm holding at 6 poops /day down from 40. No b or m. Slight cramps & urgency.

The hospital has agreed to 3 more infusions in May!!! If this kicks my flare to the curb I'll go back to my 1 infusion a month. I hope to be able to maintain this flare (or get better) rather than deteriorate to 20+ and start from scratch. Have to wait 2 more weeks for 1st infusion.

Good news. A relief.
Posted 5/3/2014 2:43 AM (GMT 0)
40 BMs per day?!?! Thats INSANE; Ive never heard a number as high as that. Any self pity I may have had for my 13/day has instantly evaporated. For your sake, I really hope this works for you!
Posted 5/3/2014 5:41 AM (GMT 0)
Im not familiar with your story but what is IVIG and Im glad you're doing better
Posted 5/3/2014 9:57 AM (GMT 0)
It's not a coincidence that IVIG nearly helped to nip your flaire. I think more research is needed on this for IBD.

When you were in remission how many IVIG infusions were you receiving? Was it an ongoing thing?

Post Edited (Guardian7) : 5/3/2014 4:00:09 AM (GMT-6)

Posted 5/3/2014 10:46 AM (GMT 0)
How much are you paying and how about your insurance? I've heard it is extremely expensive. I'm glad you're doing better, I've also read great things about it.
Posted 5/3/2014 11:52 PM (GMT 0)
rbarolo - is it true that IVIG infusion are 6 hours long each?
Posted 5/4/2014 11:30 PM (GMT 0)
Guardian: my case is tricky since I received it for another disease. At that time it was 3 infusions per month for 6 months. Then 3 monthly infusions every 3 months. This worked but I found that as the 3 month mark approached I would flare. So in 2013 they switched me to once monthly & I was in remission until dec.

Pmitra: it depends on getting the IV going, how long it takes to get the product from the blood bank, pre-meds & dosage. The dosage is based on weight...the heavier you are the higher the dose. But yes. Allow for 5-6 hrs in the hospital. I normally sleep the rest of the day & stay home for a couple of days following the infusion.
Posted 5/5/2014 1:04 AM (GMT 0)
Rbartolo,

You have asked me if I have given any thought into IVIG. Not yet but I believe I'm going to maybe have to think about options. I've had this flare since Nov 2013. Most of the time I not so bad, I even thought last week I was pulling out of it, but since Saturdays the symptoms are back.... I'm on salofalk enema, I tried Hydrocortisone enema but they didn't help so my GI put me back on salofalk.

My flare is not so bad on my worse days I have about 8 BM. But yesterday it was the first time ever I had to get up in the middle of the night to have BM and lot's of pain.

I'm very afraid of all the medications beside what I'm taking....
Posted 5/5/2014 4:43 PM (GMT 0)
I get it Chantrelle. But I don't think it's about being "not so bad." It's about quality of life and deserving the best shot at remission. I'd give anything to try FMT. They refused in hospital saying it's only for c-diff UC. But I hate taking these drugs and the side effects of IVIG are sometimes difficult to tolerate.
Posted 5/5/2014 7:53 PM (GMT 0)
FTM for C-dif UC ! I find it so stupid they don't try first on us things like FTM before trying hard med !

I guest it all comes down to money before health.

Do you know what is exactly C-dif /UC ? I mean c-dif is usually caught in the hospital... It is someone that gets UC because of c-dif or is it someone with UC that got C-dif ?
Posted 5/5/2014 9:37 PM (GMT 0)
I am so happy you're doing well :)
Posted 2/28/2015 3:46 AM (GMT 0)
My son has immune deficiency (pneumoccol), his mother is IgG deficient and uses gamma globulin (IVIG for a year and now does it subQ at home every 7 days)...now he has ulcerative colitis (autoimmune disease).

I am in search of doctors who prescribe IVIG for ulcerative colitis.
Posted 2/28/2015 10:47 AM (GMT 0)
Where are you ? There are people from every where on this forum.
Posted 2/28/2015 2:14 PM (GMT 0)
That's great news!
Posted 2/28/2015 6:56 PM (GMT 0)
Chantrelle99

I'm sorry - I am in Georgia.
Posted 2/28/2015 9:44 PM (GMT 0)
Fatherof3boys... momto2boys... where are the girls? tongue
Posted 3/3/2015 3:00 AM (GMT 0)
Momto2boys...I have a friend with 4 girls!!!

I would like to hear from rbartolo, who started this thread.
How is she doing? Her last post here was May/2014.

She got IVIG. I am in Georgia and interested in doctors who prescribe IVIG for UC; my wife does IVIG for IgG deficiency. Our son has immune deficiency (not bad enough yet for IVIG) but has now developed UC.
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