IV Immune Globulin

[Guest]

Has anyone heard of or tried receiving IV Immune Globulin x2 as treatment for CD? I understand the vaccine trial is on hold...this is another means of obtaining "passive" immunity. Any info available? Thankyou.

[Guest]

You bet - thanks for adding it to the "topics" list. I was shocked to discover we didn't have it already. <BR> <BR>There are a whole cadre of doctors in Boston who have done some studies with it. My understanding is that they've had particular success with children. I'm not sure which ones have done the research, but Dr. Cirian Kelly, listed under "Doctors" here, has a lot of fans on this site. He is involved in the vaccine research, but it wouldn't surprise me a bit if he'd done the immune globulin as well. During my own two year bout with c-diff, I figured that would be one of my "last resort" things to try if it ever came down to that. Luckily, in my case vanco always kept the problem well under control, so I just took it for a long time until I figured out how to pulse it (tapering never worked). There have been some British studies too, which may be more widely published. <BR> <BR>I can't remember where I found the studies, but Medscape is always a good bet. You have to join, but access to study abstracts is free.

[Guest]

CC- I am very interested in what you may have posted in the "topics" section; however, when I click onto "topics", my computer won't pick it up. <BR> <BR>I had an IViG at Johns Hopkins Hospital in Baltimore by a cdiff expert for the treatment of cdiff. The IViG was unsuccessful in curing me of cdiff. The doctor told me at the time that an IViG was on the "cutting edge of medical technology. That was a little over a year ago. <BR> <BR>Last summer, after my having cdiff for two years, I participated in the vaccine clinical trials in Boston. Since it was Phase 2 of the study, protocol does not allow the results be given to the general public. However, <BR>I can say that Dr. Kelly is profoundly dedicated <BR>in finding a cure for cdiff and that his team of researchers are working tirelessly toward that end.

[Guest]

CC - I neglected to tell you in my previous post that if you are considering having the IViG, it would be wise for you to check with your insurance company first. Most insurance companies do not pay for this treatment as they consider it to be experimental. The fee can range between $2,000.00 and $3,000.00 per IVIG (depending upon your weight, etc.).

[Guest]

I am happy to hear that others have heard of and even tried this treatment. I'm sorry that it didn't work for you....how disappointing that must have been. <BR>I had a consult with Dr. Lamont, a colleague of Dr. Cairan, and was very relieved to finally find a doctor that was knowledgeable about CD. <BR>He advised continuing a vanco taper that an ER doctor had started the week before. So far so good, although I have noticed some mild changes with the last taper. Dr. LaMont's next plan would be to try the IVIG. <BR>Cost would be an issue, that's for sure!! Since I've had CD I've been on STD 3 times. My employer is pretty fet up and won't let me return to work until a MD says I've had a negative culture and am not contagious. <BR>Do you know if Beth Isreal has any funding available at all? Any other sources I might consider contacting? Hopefully it won't come down to that, but I like to have my bases covered "before the game." Thankyou!

[Guest]

Addendum: Reference was to Dr. Cairan Kelly in previous posting. <BR>Thankyou

[Guest]

Hi CC, I honestly do not know if there is any funding available at Beth Israel for IVIG's. I would doubt it unless the IVIG has now been proven to be an effective treatment. When I participated in the vaccine study, most of my <BR>expenses were covered to travel from Maryland to Boston but I think that was because a clinical trial was involved in research. <BR> <BR>It is possible that my IVIG was not successful because I was only given one. A CD expert has since told me that it takes more than one IVIG. <BR>If you decide to have the IVIG, I would suggest you ask the doctor how many patients he has given the IVIG to and how many were successful. <BR> <BR> <BR>Best of luck to you ......sure hope the tapering works for you!

[Guest]

Hi, my doctor wants to give me the IV immunoglobulins now and wants me to do some research on it. I have been using alternative treatments since October to treat the CDIF. I recently did a test that came back saying that my SIGA levels are very low from fighting the infection for so long and that's probably why I am not over it yet but still having to continue treatment as many do (curious how many other people also have low SIGA levels from Cdif!). <BR> <BR>some research shows that I have found on the net that IV immunoglobulins has been used on CDIF successfully. I will try to track down info on the two docs mentioned in this topic, anyone that knows anything else at all about it, much appreciated to pass it on. You can also email me privately if you like, I included my email, I think you just have to click on my name at the start of the post. Melisa

[Guest]

I received IV Immune Globulin a few times as treatment for C-Diff. It seemed to really tone down the symptoms. I'd be happy to share more info via email.

[Rose2]

I've discussed IViG w/my doc as a possible treatment option. At this point, it's not what we've elected to do, but it's out there as a possibility. I do think it's important to note for people thinking about this to know that this product is a blood product that is culled from thousands of donors. Of course, blood products are now screened for HIV and Hepatitis, but for anyone considering this, there's always the risk of being exposed to a blood born pathogen that has yet to be identified. Also, if you're going to have this treatment done, it is highly recommended that you make sure they run the pump slowly. This will greatly increase your chances of reducing side effects. From what I understand, any healthcare professional who suggests running the pump more quickly than 4 - 6 hours is suggesting too rapid a rate. You might also want to consider being pre-medicated with benedryl and/or tylenol beforehand to reduce side effects.

Rose

[Bobbie]

Bobbie
Posted: Tue Dec 20, 2005 4:39 am
Read Dr. Borody's article. He mentions gamma globulin. Also, call National Jewish Med. & Research Center. It is the mecca for iimmunological diseases. IV gamma globulin is given to boast defective immune systems. They have a toll-free phone # that is staffed by RN's. Although, their primary emphasis is on resp. and immune diseases (there is some thought that C. diff. is one), they are experts in gamma globulin infusions. I don't believe they have a GI on staff, but you can ask general questions.

For further info. about the infusions, see http://www.njc.org or talk to a LUNG LINE nurse at 1-800-222-LUNG (5864) or e-mail lungline@njc.org.

Pauline
Posted: Wed Dec 21, 2005 12:08 am
I had two rounds of gamma globulin while I was hospitalized in Sept. It came in a glass bottle like the old fashioned IV's used to be. They run it in super slow-one bottle over 9-10 hours. I felt so lousy anyway I didn't notice any thing particularly heinous about it. I do attribute my slow but steady recovery to it-after my second round I started feeling a little like my old self again.

I hope it works out for you.

Pauline

Bobbie
Posted: Thu Dec 22, 2005 12:40 am
fluff,
National Jewish specializes in resp. disorders such as asthma and other diseases of the immune system, and to my knowledge doesn't have a GI on staff. They have a whole floor where they do GG treatments (or did when we were there), however. There is some thought that recurrent C. diff. is an immune problem.

If the nurse doesn't call you back, call and talk to another nurse. They are good about doing research and can tell you the pros and cons of the GG treatments. Also if you have a local "Ask a Nurse" hotline or a hotline connected to your insurance company, call them. They don't have a vested interest and can give you an overview.

From what I've heard, GG treatments are very expensive and have to be done on regular basis. Dr. Borody's article doesn't recommend them for C. diff., but one of the new articles about C. diff. does mention it. (See Media Reports.)

cindym
Posted: Thu Dec 22, 2005 2:02 am
Cindy is back and feeling okay........thank goodness! I just wanted to say that I am totally amazed that a doctor is jumping to do the IVIG treatments so quickly. Those treatments are about $5000 each and no guarantee of working for cdiff. My doctors are reluctant to do them......why I do not know........something about messing with immune system which could in turn cause other problems. Who knows who to believe these days? Geez.....I should have been a doctor! My coughing is now controlled (however still present) and I can breathe. Hope I continue down this road and maybe in 3-4 more days be over the junk.
_________________
Cindy

Bobbie
Posted: Thu Dec 22, 2005 2:14 am
Immunoglobulin (IVIG) therapy is the infusion of immunoglobulins into a vein. These immunoglobulins are a type of protein found in human blood that helps to fight off harmful bacteria, viruses and other germs. IVIG products are derived from the plasma of large numbers of individuals who have formed antibodies to a wide variety of microorganisms. All donors and their plasma go through several rigorous screenings and testing for safety.

These products became commercially available in the early 1980’s. There are six indications approved by the Food and Drug Administration (FDA), but IVIG is used to treat over 70 other “off-label” conditions supported by a consensus of expert opinion. Most disorders IVIG therapy is indicated for are either primary immune deficiencies or autoimmune neuromuscular disorders.

Patients receiving IVIG therapy for primary immune deficiencies usually receive the therapy for life, while patients receiving IVIG therapy for autoimmune neuromuscular disorders receive the therapy intermittently over a period of months, and sometimes years, depending on their condition.

Some Conditions Treated with IVIG include:

Autoimmune Neuromuscular Disorders:
• Autoimmune Diabetic Neuropathy
• Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
• Guillain-Barré Syndrome
• Myasthenia Gravis
• Multiple Sclerosis

Immunological Disorders:
• Common Variable Immunodeficiency (CVID)
• Hypogammaglobulinemia
• Severe Combined Immunodeficiency (SCID)
• Wiskott – Aldrich Sydrome (WAS)
• X-Linked Agammaglobulinemia (XLA)

Do some research on one of the medical web sites: www.mayoclinic.com, www.webmd.com, www.medscape.com

Phoebe
Posted: Sat Feb 11, 2006 12:50 am
I know this is kind of an old thread, but I thought I'd go ahead and post for anyone who is wondering about IVIG. I have Common Variable Immune Deficiency (CVID) and I get Gamma Golublin infusions every month. I'm small (about 108 lbs) and the amount is partly weight dependent. My infusions usually take about three hours. If I weighed more, they'd take longer. The most common side effect with IVIG is a headache 24-72 hours later. Drinking lots and lots of water a day or two before, the day of and the day after infusions usually stops the headache. Sadly, some people have diarrhea as a side effect also. I had the headache twice before I figured out what to do. Docs will usually premedicate (and if they don't, you should) with Tyelenol and Benadryl to prevent side effects during the infusion. If you do have side effects during the infusion, slowing the infusion rate will usually help. If you tell the nurses they'll slow it down. It's a clear liquiid in a bottle (pooled antibodies extracted from the blood of thousands of healthy donors) that drips into your vein. It's now also available through the skin instead of the vein and you can set up to do it at night at home. I don't think too many doctors know how to do that yet. I get it once a month to maintain a healthy level of immunoglobulins. I always notice near the end of the cycle - I start not feeling well. It sounds like for c. Diff, they do a more intensive infusion all at once. Supposedly it doesn't help all that much with GI problems so it's odd that they're using it for c. diff. On the other hand, I had a constant awful burning in my gut that all the docs said was GERD and it went away when I started the IVIG, so it obviously had some impact on some sort of infection in my gut.
You shouldn't need to go in the hospital for it. Hematologist/Oncologists are all set up to do it. They use it often with cancer patients to replenish their immune systems after chemo. I go to the outpatient oncology center. I sit in an easy chair, watch a movie and doze (Benadryl and my doc also premedicates with a hit of Demerol). I kind of enjoy it actually.

Rose2
Posted: Sat Feb 11, 2006 5:41 pm
Phoebe knows of what she speaks!

IViG has been around for years and is used to treat a number of disorders. It's just one of several treatments that doctors are experimenting with for recurrent c-diff. Like any experimental treatment (infusion, rifaximin, etc) there are no clinical trials to point to. It's all based on theories and some anecdotal reports. I think pursuing any experimental treatment is a very personal choice that a patient makes with a doctor who they trust.

As Phoebe noted, I'd recommend insisting on being premedicated with benedryl and tylenol to minimize side effects. Also, insisit that they run the IV slowly. Anything faster than 3-5 hours sound too fast. The faster they run it, the more likely you'll have side effects (like headache).

In my opinion, the biggest risk of this treatment is that it's a blood product drawn from thousands of donors. Although they test blood for HIV and hepatitis, etc, there's always the possibility that the product could contain a blood born pathogen that has not yet been discovered (as was the case during that window of years before we discovered HIV). The risk of this is probably extremely small, but it's a possibililty none-the-less. It's all about risk/benefit ratio and in the case of experimental treatments for recurrent c-diff, unfortunately, the benefit is one that isn't much more than a guess.

I think all of us with recurrent disease have different comfort levels with what we're willing to try and where we draw the line. I dont' think there's any right or wrong in what to do. Ideally, you have a doctor you have a good partnership with and, in the end, you listen to your instincts.

[Bobbie]

Allison posted this. Thx. Allison.
Posted Feb. 27, 2006

Folks -

The connection between impaired immunity and cdiff isn't new and at least one direct correlation is pretty clear (through about a cajillion studies) -a faulty antibody response to the cdiff toxins is a factor that leads to increased relapses and reoccurence. This has been one way that an immune response specifically targeted against cdiff can be measured.

So, ok, lets try IVIG therapy - give these folks pooled human antibodies and see what happens. When this was tried, the results were about the same as they were with other treatments (repeat vanco, pulsing, tapering).
There was no statistical difference between the treatment arms. Not the answer they were looking for.

No physician will doubt that cdiff is part of the territory of being immune impaired. It's a law of nature. All opportunistic pathogens will take greater advantage of a weak host. They've known this for decades. Afterall, that's the only population this bacteria used to strike. Immune problems can be obvious or not (underlying disease vs. apparent co-morbidity) but it's not always that important in the long run because treatment modalities haven't made a difference between the various patient populations that acquire cdiff. An immune impaired individual isn't going to be treated any different than one who is not in order to get rid of the infection. Three huge multi-center studies conducted on AIDS patients bore this out in 1999 and 2000.
(FYI - the AIDS patients had the same relapse rates as the general population - about 15 -20%, and got over cdiff with no more or less trouble than the rest of us).

All the research points to MULIFACTORIAL causes for cdiff infection, especially relapsing disease. Impaired immunity is but one, but it is not the only one. We are all familiar with the other factors - increasing resistance and virulence of the bacteria leads the pack.

[vicki976]

reading through the replies i bless the nhs in england as cost of treatment is not an added stressor. my husband terry started immuno globulin 48 hours ago and is responding well. his cpv reading has gone from -4 to 11.5 today although he is still grossly swollen and leaking on the backs of his hands. his testicles are like melons which just adds to his discomfort

but he is responding after renal failure, ileus and a confirmed diagnosis of pseudo membranous colitis

i sense he is coming round now and strengthening after two months of being, and still is, on the critical list

vicki

[Bobbie]

Christina supplied the following info. Thx.

I was "cured" by IVIG's. I was given 3 total, one every 3 weeks. Normal protocol for severe recurrent C-diff is two and I have no idea why my Dr. decided on two except that I was given the option for "good luck". Thankfully we did do three as the 1st two didn't take. My non medical opinion is that the 3rd one took because it was done during a very serious relapse. Not really sure if that is why it worked but that was the only difference.

Each treatment consisted of 400mg of Polygam S/D. I had no problems w/ the IVIG's themselves as they were very easy to take. They took 3-4 hours each at which time I was fed and played cards, etc. The hardest part was letting them do their work as it was a long road to recovery(about 5 months). I was pulled off of Vanco immediately following the first one not to be put back again unless absolutely necessary. The theory behind the IVIG's is to hold off the C-diff long enough without taking Vanco, for your normal good bacteria to replenish itself. Nothing more, nothing less.

The downside to this is because they are considered experimental for the use in C-diff most insurance companies will not cover them. Each IVIG runs about $2,600. If it is a last resort because all else fails it is worth giving it a shot but just like everything else w/C-diff it does not work for everyone.

--------------------------------------------------------------------------------

Studies on antibodies,IVIG, and antibody response in recurrent C-diff:

http://www.thelancet.com/journals/lance ... 0/fulltext

http://www.thelancet.com/journals/lance ... 3/fulltext

You will need to sign up to read these but it is totally free.

Moderators' Note: Remember, no treatment is without risk. What works for one might not work for another, but several people on this site have been helped by IVIG. Christina went through a lot & tried many options before she found one that workd for her. "Persistance pays off."

[Bobbie]

For more info. about IVIG, see National Jewish Medical Center at http://www.njc.org/

Questions? Ask a LUNG LINE nurse.
Call 1-800-222-LUNG (5864) or e-mail LungLine LungLine@njc.org

National Jewish Named Best Respiratory Hospital
For the ninth consecutive year, National Jewish Medical and Research Center has been named the #1 respiratory hospital in the nation by U.S. News & World Report.

I took my son there years ago & was very impressed. They are experts in immune diseases & can provide info. on IVIG.