Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Is IVIG available for UC?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 12/28/2020 7:05 PM (GMT -8)
Hi all,

I am researching new treatments for UC. IVIG looks promising and does not have the immunosuppressant effects or serious side effects of biologics (although rare). It is generally safe and well tolerated treatment. I have not heard of anyone trying it on this forum.

Anyone have any experience with it? How does one get this treatment approved with insurance?

Post Edited (Jane974) : 12/28/2020 8:08:25 PM (GMT-7)

profile picture
U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1158
Posted 1/5/2021 5:09 AM (GMT -8)
I've been on IVIG for over 10 years. First to treat PG then found it worked for UC; now I have crohns. I believe had they not dramatically cut my dose I wouldn't have evolved to crohns. It's massively expensive. I'm in Canada so it's given at no cost to me; but my dosage went from 3x month to once.
profile picture
Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/5/2021 5:44 PM (GMT -8)
Hi UB tough,

Do you get side effects from IVIG? How did you get access to it? I don't know how to get access in the US.
profile picture
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16430
Posted 1/6/2021 6:04 AM (GMT -8)
I would assume IVIG is off-label use for UC. Nonstandard treatments are harder to get prescribed by gasteroenterologists and approved by health insurance. You have better luck if you've failed standard treatment like remicade and azathiopurine.

If you search this forum, you will see some historical posts on IVIG. As there's been discussion about it before, successes and failures in treatment.
profile picture
U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1158
Posted 1/8/2021 9:33 PM (GMT -8)
Hi Jane,

I had horrible PG (skin disease) that wasn't responding to traditional treatment and I was very close to losing my leg. My very savvy and keen resident dermatologist found a small study (I believe from Switzerland) that showed improvement for PG. Within weeks my skin started granulating and within 6 months my skin had fully healed. However, in that time I began to notice an improvement in my UC so my derma continued to use it after PG cleared until such time as it had to be transferred to different GI's. I think I've been to 3 different hospitals in my city to keep it up. As I mentioned, they cut my dose due to cost and its off label use for UC. I can still use the PG as a loophole to continue using it as a preventative measure. At one point when I was severely flaring - 40x day I fought for my original dose and within 8-10 hrs my bm's were cut in half. It's truly lifesaving. But it's a commitment. I spend 7-8 hours in a hospital chair for treatment - now once a month. For PG it was 3x month.

I had significant side effects at first - severe migraines, nausea, fatigue - but I was also a terribly ill person. It was worth it though. I only have mild headaches, nausea (I use zofran) now; maybe for a day; maybe no side effects at all. I had to have a port implanted though as I've run out of veins.

Last year there was a gentleman on the CD side that was trying to get it. He had the support of his GI. Unsure if he ended up on it.

You really need a GI willing to fight hard for you to get it. I'm exceptionally lucky with the many GI's who had compassion and were willing to bend the rules to treat me with this - at no cost. As successful as it's been for me I don't believe any of my GI's have prescribed it to their other patients. It's simply too cost prohibitive and takes a lot of nurse power to administer.

I really hope you can get it!

BTW I just noticed on the Hailey's letter thread that Fatherof3Boys' wife uses IVIG. Perhaps he is in the US and can help you.

Post Edited (U B Tough) : 1/8/2021 10:48:09 PM (GMT-7)

profile picture
Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/9/2021 7:35 PM (GMT -8)
Hey UB tough, thanks for sharing your complicated journey. I'm so glad that IVIG helped you and so frustrated to hear about insurance access issues. Unfortunately, I don't have a path towards getting IVIG since they don't prescribe it in the US and I don't have a long hx of failing multiple treatments. When I asked my GI, he said that they don't use it for UC and that it's pretty hard to get.
✚ New Topic ✚ Reply


More On Ulcerative Colitis

8 Foods To Avoid With Ulcerative Colitis

8 Foods To Avoid With Ulcerative Colitis

Taking Action Against Fatigue From Ulcerative Colitis And Crohn's

Taking Action Against Fatigue From Ulcerative Colitis And Crohn's


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.