Gamma globulin infusion for c-dif

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barbj
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Gamma globulin infusion for c-dif

Postby barbj » Mon Dec 07, 2015 10:17 am

Hi, am 58 y/o otherwise healthy female. First post. Have been lurking! I am on my third round of vancomycin. I've tried taper and pulse, but the symptoms return with a vengeance within weeks to days of ending the Vanco. I saw ID this time. We are going to overlap rifaximin with the Vanco. If that doesn't work, he would then like to give me an infusion of gamma globulin. It's expensive, but he said it will knock it right out. Has anyone heard of, or tried that? I can't find much in the research. I keep testing positive for the D.

It sounds like I'm already planning for the rifaximin not to work, I know! But each recurrence is harder than the last. I get SO sick until I start the Vanco! I could rob a pharmacy for Vanco. Lol

Any ideas? Am taking Florastor and kefir which ID said not to bother with. It hasn't helped so far

georgina
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Re: Gamma globulin infusion for c-dif

Postby georgina » Mon Dec 07, 2015 11:01 am

Hi Barbj
Welcome to the site that nobody wants to join,sorry you are dealing with CDiff.There was a old poster who was cured by IVIG.Her name was Christina , you can search her old posts and also read her case hystory.

NikaNik
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Re: Gamma globulin infusion for c-dif

Postby NikaNik » Mon Dec 07, 2015 11:25 am

Hi, Georgina,

Sadly the IVIG did not work for Christina (only temporarily). What worked was a colonoscopy FMT which she mentions in her case history (believe she's been okay for about four years now - I messaged her recently).

Hope you feel better soon, Barb. Something will work! I know how frustrating it can feel. A 30-day Dificid taper with Enteragam worked for me (I'm just about eight months into recovery now). Hang in there! : )

Blessings,
Nikki

roy
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Re: Gamma globulin infusion for c-dif

Postby roy » Mon Dec 07, 2015 12:32 pm

I have moved this ti.questions so you get a better response.

seekingcure
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Re: Gamma globulin infusion for c-dif

Postby seekingcure » Mon Dec 07, 2015 1:59 pm

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.
No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

I just wanted to welcome you to the site and give you are standard introductory letter. I haven't heard a whole lot about treatment with IVIG for c-diff, but I know there are a couple of posters who have used it. As Georgina suggested, you can search the site for information. I believe it is used to boost the immune system in general in people with primary immunodeficiency and is sometimes used for refractory c-diff.

Have you looked into FMT? It has worked for many of us and may not be as expensive as the IVIG treatments, depending on your insurance. Good luck with whatever you decide. Keep us posted.
Bea

roy
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Re: Gamma globulin infusion for c-dif

Postby roy » Mon Dec 07, 2015 2:31 pm

If you type ivig into the search box top right of this page you will find all the old posts about this.
I would think tapers, dificid and FMT would be way in front of considering IVIGs.

beth22
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Re: Gamma globulin infusion for c-dif

Postby beth22 » Tue Dec 08, 2015 1:06 am

There is another similar treatment using monoclonal antibodies. Not sure where it is given. I know that one of the hospitals here in town does it and the doctor says the results have been excellent. You can "google" it to see if there is anywhere near you that does it or talk to your doctor about it.

barbj
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Re: Gamma globulin infusion for c-dif

Postby barbj » Thu Dec 10, 2015 4:19 pm

Thanks for all the replies. I had what felt like a recurrence on Tuesday, even on vancomycin, and taking Florastor. Had body aches and was extremely cold, but oddly, no shivering. Had several bouts of D, with the distinct odor, which I have only had once or twice. Am wondering if my bodies defenses are just shot. My doctor had me start the rifaximin early, so am now taking both. I had more blood drawn today. Have had a wicked headache, even though I am staying hydrated, I think. The doctor I'm seeing poo,poo's fecal transplant. Am thinking he doesn't do them. So he is trying to get the gamma globulin approved. The fatigue, and general I'll feeling, is really getting me down. I do have an appt early Jan with a doc that does FMT. But in the meantime, if I can get the IVIG, I figure nothing to lose. Is that wrong? I don't know what the side effects, long term effects of IVIG are, if any. Am foggy headed, nauseated, headache and profound fatigue. Wondering how I'll have family for Christmas. Any thoughts?

roy
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Re: Gamma globulin infusion for c-dif

Postby roy » Thu Dec 10, 2015 5:01 pm

In the UK we have turkey for Christmas, family are a bit tough to chew on!

I would ask if I could taper over the Christmas period but have enough meds to go back up to a full dose if I needed to and wait for that appointment in the new year
The odd day of feeling like its back is normal so look forward not back!

I would be studying the IVIG closely as its not used very often.
I think Beth considered it and said no due to the amount of doners that it takes to produce the infusion but I might be mistaken on that.
FMT has a proven cure rate.

beth22
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Re: Gamma globulin infusion for c-dif

Postby beth22 » Thu Dec 10, 2015 6:48 pm

I asked the ID doctor about it and about the monoclonal antibodies as well. They both use a lot of donors and since the IVIG did not work for Christina, I did not pursue it. I would rather do FMT with my own donor, which I did, or if using OpenBiome, then at least it would still be one person who was carefully screened. IVIG works well for other illnesses I understand, but I don't think it has had that much of a success rate for c difficile. That is why they were testing the monoclonal antibodies, that were more specific.

barbj
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Re: Gamma globulin infusion for c-dif

Postby barbj » Thu Dec 10, 2015 7:31 pm

Haha Roy! Yea family is a bit tough to chew! Mine especially these days...thinking about a long slow baste in a light bouillabaisse this time, see if that helps!

Good idea to taper the Vanco for the holidays. I am just so freaking tired, guess I'm hoping to be struck cured!

Beth did the FT work for you? How are you feeling?

Thanks for making me laugh!

Ps: Might be moving to Glascow, from US for husbands job. Overwhelming, and now with the pleasure of C diff, seems impossible. When I first started reading this board, Iwondered if some were a bit hysterical. Now I get it, boy do I get it O=

roy
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Re: Gamma globulin infusion for c-dif

Postby roy » Thu Dec 10, 2015 7:42 pm

Your not going to fit in if you cant spell Glasgow!

Look up the "Glasgow kiss"

beth22
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Re: Gamma globulin infusion for c-dif

Postby beth22 » Thu Dec 10, 2015 9:39 pm

The FMT did work, although I have other issues, like pancreatitis, SIBO, IBS. That is thanks to the c diff and the meds to treat it. No one knows what caused the pancreatitis, but I didn't have any problems before c diff. Unless you have other illnesses that are auto-immune, I think the FMT would probably be more beneficial and specific to treat c diff, but talk to an ID doctor about it. If the only reason your GI is suggesting it is because he doesn't do FMT, that would not be a good reason. Many other doctors do. I think the taper is a good idea. Maybe it will go away with that.

Bobbie
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Re: Gamma globulin infusion for c-dif

Postby Bobbie » Thu Dec 10, 2015 10:28 pm

barbj,
For all you want to know about GG, see CDI - National Jewish. They have a toll free number staffed by RNs who answer any questions you have.

I looked into it years ago. Your immune tests must be very low to qualify and insurance sometimes does not cover the treatments. One of our former posters, Jo, is on the treatments. If you wish, I will ask her if you can contact her.

Best to you.

barbj
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Re: Gamma globulin infusion for c-dif

Postby barbj » Fri Dec 11, 2015 3:18 pm

Thanks Bobbie, I can't find the National Jewish number to save my life. I'll keep surfing. I was able to get my appointment moved up for FMT consult to Dec 16. But then found out they only do the NG installation. As desparate as I am, don't think I can do that

Then after searching this site, I did find a doc whose nurse said he "can" do the pills. Have an appointment on Dec 21. Plus still waiting to hear back on IVIG. Bobbie I would love to hear from Jo, who you mentioned is getting that tx...

Thanks for ALL of your help. Having a moment of feeling relatively OK. The fatigue, and nausea are mostly unrelenting, and It sure feels like I've been kissed by a Glawegian, Roy. Think I'll fit right in

Hope you are all feeling well


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