Intravenous Immunoglobulin (ivir) Anyone ever heard of this?

No one?..... hmmmm.... okay, well I will keep this updated so maybe it will help someone in the future.

Basically it consists of three different infusions over 3 days. They gave me Tylenol by mouth and benadryl by iv because the side effects are fever, chills, and allergic reaction. Then they give me and infusion of saline. Then they give me the iv immunoglobulin (ivig). If you are more stationary and don't walk much, they may give you heparin shots. They wait 24 hours and then do the next infusion the same way. Then wait 24 hours and do the 3rd infusion the same way. Then they release you.

Instead of suppressing your immune system, it more or less regulates it. It also makes you more resistant to colds and viruses. On rare occasions, blood clots have been known to occur within 2 weeks of treatment for individuals who are already at risk for blood clots.

I have only had 2 infusions and already feel significantly better! If you have any questions about this proceedure, I'll do my best to reply any questions that I am able to answer.

I have had my third and final infusion, and I feel much better. I think the treatment worked well. I get to go home today. My pouch is no longer full of ulcers (for now). The cuffitis is remaining in remission with the canasa suppositories. Hopefully it will be a while before I'm back here again.

This therapy is used to combat autoimmune responses. If you have any other questions about it, feel free to message me. Or you can email me directly at endi_jo at yahoo dot com.

Endi, Happy to hear you are doing better. Thank you for sharing another option to research in comparison to biologics. From what I read it sounds quite expensive.(What isn't these days!)
Does this have to be done inpatient,or can it be done outpatient ?

Thanks Endi,

Sorry I missed your posts in the beginning. I had never heard of this before and appreciate you posting your experience. In 3 days your pouch and cuff ulcers are in remission! That is fast.

I hope you stay in remission forever!

It has to be done inpatient. It is expensive but is being covered by insurance companies more often now. It is usually used as a last resort option. My doctor didn't want to start Humira without bridging it with Prednisone. But Prednisone makes me dangerously depressed. I refused the Prednisone. She felt the ivig was the next best option for me as she felt my Pouchitis was a Crohn's flare. I am feeling better and better each day. No more bleeding now.

Endi, I am so glad you are continuing to feel better and apparently have had no side effects! Much better than the devil drug prednisone, which I have also refused for years. Insurance companies make medical decisions for us that are not always in our best interests. This might have been one of them. It is best to leave "medical" decisions between the doctor and the patient instead of trying the cheap (prednisone) route first. I admire your doctor for finding a way around the system as I suspect she did. In other words if the side effects of prednisone were too severe for your body at this point in time and she made that case to them then this treatment might have been approved on those grounds. I am purely speculating but we don't always know the hoops our doctors have to go through on our behalf.

Are you going to go in humira now or wait for trouble to rear up again?

Stay strong!

Thank you for posting. I was interested in this treatment for my son and the GI refused because I guess it has not been studied in children yet. It sounded preferable to biologics. Did they expect you would still have cuffitis after the treatment? How often do you have to get it? Thank you

My insurance is through Blue Cross. They typically do not cover it and still consider it experimental for IBD. However, the case was made on my behalf before the treatment and it was pre approved. It really has made a huge difference. I don't know how long the effects will last. It could be several weeks. It could be several months. With this being the first treatment, we will have to wait and see. Humira or Remicade might still be options in the future. But at the time, it was severe and a quick acting treatment was needed, and prednisone was out of the question. I didn't feel like getting on a drug that made me want to shoot myself was a good idea and neither did my doctors. Additionally, I have never responded to Prednisone. After very high doses of it, I still ended up getting an emergency colectomy. The future is still up in the air. It has a "medium term" effect according to other reports. I will keep everyone posted.

IVIG is so expensive because it takes 30 blood donors to make one dose. Learned that after my daughter was treated for Kawasaki's.

Interested in hearing how long the effects last. Keep us posted.

Here is a new update. Today, I feel amazing! I feel better than I have in years. Ever since I had my j pouch in 2006, bowel movements have ALWAYS been very painful. I thought it was normal. But today, I had this slightly uncomfortable pressure like my j pouch was full but I didn't think that I needed to go because it didn't hurt. It was such an odd feeling to me. I went ahead to go anyways and my j pouch was FULL! It was so bazaar to me! Even when my cuff and j pouch were deemed fine and intact by my doctors, it was still always painful. And I slept last night and didn't have to use the bathroom at all! I still can't believe it. My j pouch is ACTUALLY absorbing water! I'm not dehydrated and my stool is not watery! I am ELATED!

I am a person of faith, so while I feel this treatment was so helpful, I also had my study group surround me last night and pray for me. I believe being blessed with great doctors and this treatment along with prayer have all helped me get to this point. I am still in shock at how great I feel and all the energy I have. Even after and hour drive home in horrible rush hour traffic! I will keep you guys posted.

After too many near death experiences and failing all conventional IBD therapies, including living with an ileostomy, I tried IVIG for my Crohn's. After the 3 days of loading doses, I developed aseptic meningitis and had the headache from hell. The next maintenance doses I did a few days of steroids before the infusion, and then iv steroids, and benedryl the day of. My Crohn's was too severe and I was too sick by this point to see any benefit from the IVIG. However, when all other options have been exhausted I believe IVIG is worth a shot. Not many people have heard of IVIG being used for IBD; the research is limited and IVIG is quite pricey. If you have any questions about it, I will try my best to answer them.
I hope you have greater success with IVIG than I did.

Also, I was living in Nashville (hence my screen name) and it was my doctor at Vanderbilt who suggested the IVIG. I see you are in Nashville, too. Do you see a doctor at Vandy?

Yes, my doctors are at Vandy. I'm happy that they have built and expanded the IBD Clinic in the last few years. Yes, I did respond to the ivig therapy very quickly. Of course, I was admitted very quickly after I started to flare. I had only been flaring for a week and a half before the therapy started. Yes you are right - once it's too late, it's too late. I think ivig like all other therapies, is great only when your body is receptive to improve, if that makes any sense. I really hope this therapy starts getting more recognition. Of coyrse, like I said, I think prayer is more than complimentary :-)

Commodore, do you mind me asking did you receive the ivig before or after your colectomy? What ended up finally calming you flare down? And how long after the infusions did the meningitis develop?

This is very interesting to me. While I have not had the IVIG therapy, it is something that my sister has been on for a couple years. I'm the one with the j-pouch... but she's the one needing the IVIG. Go figure.

She does her IVIG at home, but she is a nurse as well, so I imagine she gets some special "exception" because of that. Her treatment is for an auto immune issue.

Which brings me to my post... I've been wondering for a couple years now about the connection between auto-immunity issues and the manifestations... how some of us come up with UC or Chron's, and others have different issues. I also wonder about the familial component. And, then, I'll just throw this in for fun... I wonder if these auto-immune issues could be a type of birth-defect or disorder??? I'm merely speculating... but my mom smoked cigarettes, and didn't know any better back in the day. Smoked through all three of her pregnancies... and both my siblings and I have auto-immune issues. I was the only "lucky" one to end up with UC... requiring a pouch in 1998.

Just some random thoughts/questions. Let me know what you think! Thanks!

-- Linda

lclassen,
I've done extensive volunteer work with the March of Dimes in the past. Their mission is prevention of birth defects and one of the biggies is smoking cigarettes. As I recall the biggest reason is it can cause low birth weight babies. I saw a video once of a mother fitted with a baby monitor to see the affect on the baby's heart rate when she smoked. It increased dramatically when she smoked. It wasn't too bad with the first cigarette but got worse with the second. I forgot the interval - I saw this over 20 years ago.

Then there is the theory that nicotine helps UC patients. So go figure.

Interesting thoughts lclassen. But I'm thinking that although smoking during pregnancy provides a less than healthy gestational environment, I'm not convinced it would be the cause of immune issues. All but one of my five sisters and I have auto immune disorders. There is certainly a genetic component and then likely also some environmental triggers. My mother did not smoke. Apparently being female makes us more susceptible to developing an auto immune disorder. Exposure to particular viruses have been suggested. I sometimes wonder if I didn't trigger my own while traveling in India as an 18 year old where I developed pretty serious amoebic dysentery. Did I alter the gut flora? I imagine the field of immunity is extremely complex and I do wish 'they' would make more sense of it. I'm always hoping for the magic bullet.

Another interesting statistic,is for some reason smokers usually don't develop the autoimmune liver disease PSC.

Further on the discussion of smoking, my GI told me that nicotine keeps UC at bay and people sometimes use a nicotine patch. My symptoms appeared when I quit smoking.

Lclassen, in response to your post, I created a new thread if you'd like to check it out. Just go to the link below. It explains my opinion on why disease like crohn's and colitis are more common in developed countries than third world countries.

http://j-pouch.org/eve/forums?...867011276#6867011276

Endi, I received IVIG after the colectomy. I had my entire large intestine removed, and subsequently several small bowel resections once the Crohn's kept returning at the anastomosis. The bowel resections are what calmed my flares down and now I am about to have another resection and start Entyvio, since Simponi isn't cutting it. The aseptic meningitis began after the 3rd day/3rd infusion. They said it was from an overload of the IVIG since they did it 3 consecutive days. But once I did the maintenance doses I didn't have the same reaction, I think because they were spread out rather than back to back.

How are you feeling now?

I'm feeling really good. I will be continuing my treatment. I have put my ongoing experience with my ongoing treatments in a new post. You can click on the link below to read about it.


http://j-pouch.org/eve/forums?...897043276#3897043276

Endi - I have heard of IVIG. How often do you have to do IVIG and how many hours is the actual infusion?

After my initial 3 infusions for 3 days, I am now getting one infusion every two weeks. My next appointment is Monday. It lasts about 4 hours. The first few days after an infusion, I feel a nice slightly euphoric energy.