Anyone done extensive research on renal failure/blood clots in ivig?

    • Anonymous
      March 4, 2007 at 11:19 am

      I just started doing research about the above mentioned side effects of ivig. I know that sucrose in ivig is the link to renal failure and sodium is the link to blood clots and I guess strokes.

      I would love to hear from someone who has done lots of research of this. Dell is getting about 2 grams per kg of weight but would rather up the dosage. The dr. is talking about him starting on some bad drugs. I would like to be able to present him with data showing the lower risk of higher dosages of ivig vs. Dell going on a cancer drug.

      I think I should tell you Dell is also on solumedrol but I don’t think they are high doses. Nothing like Pam was on. He gets 100 mg one week, then 200 mg the next (along with ivig).

      If it’s too complicated to post, I would love to talk over the phone. My cell is 228-282-5050.

      Thanks, Lori Massey

    • Anonymous
      March 4, 2007 at 11:51 am

      Hi Lori,

      The one and only fact that I know for sure is that if you are a diabetic, never ever take IVIG with sucrose in it because it can cause renal failure in a very fast period of time. This warning is always for diabetics.

      Does Dell have diabetes? If yes, then have the Dr order an IVIG that is not sucrose based.

      As with any med or treatment there are many risks, but I have seen IVIG do wonders for Frank and the others here.

    • Anonymous
      March 4, 2007 at 12:34 pm

      Hey Lori.

      I’m going to do some research to find you specific data but that could take me a few days. You know how I am about my research, LOL.

      I was concerned about Emily getting a blood clot from the IVIG. I talked with one of her nurses that has been in the profession for over 30 years & has done IVIG infusions since it was developed in 1984. She told me that most people do not have problems with blood clots and IVIG. She said that if someone does start to show signs of it that they will be given Heparin or Warifan (I think that’s what the last one is called) to thin out their blood.

      She said when a person gets IVIG that is why the dr’s do a blood test every 4 weeks or so to check the protein & clotting factor in their blood. It’s a good indicator if someone is having a problem.

      I know I also read somewhere that people are less likely to develop clots if they get the IVIG through a port or other central line as opposed to an IV in the arm.

      Everything that I have ever read on the dosage is that it should NEVER exceed 2 grams per kg of weight per infusion – especially in children. However, I have NEVER read anything anywhere that says that getting the dosage of 2g’s per kg more frequently is bad. None of the literature recommends a dosing schedule. Everything says that it should be based on the individual patients response.

      I know I’ve said it before but I really think you should talk to the dr about doing IVIG 1 time a week for 1 month to see if it helps Dell. He’s getting treatments 1 time every 2 weeks, right? If the dr won’t go for 1 time a week then maybe try to convince him to go 1 time every 10 days. That would only be 1 more treatment a month then Dell currently gets & you might see improvement with that.

      We saw an immunologist once that suggested putting Emily on Methotrexate. We’ve never seen him again. I personally feel that it is utterly ridiculous to put a child on those heavy duty drugs before trying out every way possible for the IVIG or steroids to work.

      As you know Emily gets her IVIG at home. The home care company is extremely concerned about any type of lawsuit so they monitor VERY closely our IVIG schedule. They have a nurse that is very familiar with IVIG on staff & she has never expressed concern over the amount that Emily receives. I’ve been told that the nurse has cancelled other patients IVIG’s because of their blood test results or because of a possible adverse reaction.

      I know that you are very concerned about Dell’s safety but honestly I don’t think that doing 1-2 more treatments a month will cause anything bad to happen.

      I hope that helps & I’ll email you if I find any info out.

    • Anonymous
      March 4, 2007 at 1:00 pm

      Hi Lori,

      I have also posted in the thread you have started in the CIDP threads about increasing dosage of IVIG. Just a suggestion, maybe keep your questions in the same threads so people don’t have to go to other places to answer your questions. A lot of people don’t read all the treads in other areas, so keeping questions in 1 area would be better for you to see all the answers of your questions.

    • Anonymous
      March 4, 2007 at 9:08 pm

      When I first started taking IVIg, the doctor was very cautious about increasing frequency of the dosage. He said that it could cause kidney failure. All the research indicated that kidney failure is very rarely caused by IVIg. However, if the person is a diabetic then note what Brandy posted about IVIg with sucrose (sugar).

      Remember, I’m not a doctor so double check with a few people in the medical profession before making a decision.

      Jim C

    • Anonymous
      March 4, 2007 at 10:13 pm

      I am not the typical GBS/CIDP patient because I also have vascular problems and am very likely to get clots.I am on coumadine and have to have my blood checked(PT-INR) every other week.We noticed that I was developing clots just after my IVIG infusions.I have an ABF graft in place,and clots were lodging in it.My vascular doc looked into IVIG and working with my neurologist slowed my infusion rate.A fast rate makes you more prone to clot.They also give me a 40 mg’s of Lovenox before each dose.My dose of IVIG is 28 grams for 3 days every other week.I have not had a clot since we slowed the rate and started Lovenox injections.I am diabetic,but it’s mild and no renal problems so far.

    • Anonymous
      March 5, 2007 at 10:59 am

      There is more of a chance of blood clots with plasma pheresis I believe then with IVIG. I don’t recall hearing anyone having blood clots with IVIG, but I’m sure there can be.

    • Anonymous
      March 5, 2007 at 5:06 pm

      Dell is not a diabetic but lots of the ivig’s have sugar in the ingredients. It doesn’t say sugar but it’s a form of it. The one we’ve been using has maltose.

      Dell has a fever today, another thing to worry about. He has recurring fevers that my neurologist here and my and husband and I think have to do with his illness but that the neurologist at John Hopkins thinks has nothing to do with CIDP.

      I got the info on blood clotting from the guy who sells our ivig.

      Thanks, Lori

    • Anonymous
      March 5, 2007 at 10:21 pm

      Hey Lori,

      I’ve been doing tons of research on the blood clots & IVIG. I can’t find anything specific other than “it could happen but rarely” kind of info.

      There just isn’t anything out there about it. I’m going to assume that it is an extremely rare side effect.

      I hope this helps. I’ll keep looking though.


    • Anonymous
      March 6, 2007 at 10:47 am


      Thanks for your research. Looks like we are scheduled for another 3 day round. Don’t know the grams yet, I need to get my ducks in a row then contact the dr. Usually, we see him while he’s writing the orders so he usually does what we ask for. All in all, I love him because he listens to what we have to say.

      I’ll keep you posted. I’ll probably call you soon.

      Love, Lori

    • Anonymous
      March 8, 2007 at 10:46 pm

      Hi Lori,

      Here’s something that may put your mind at ease –


      This is a discussion of ivig and renal failure – primarily from sucrose. Here is a small quote from the article, concerning the use of maltose:

      Intravenous immune globulin preparations containing maltose, glycine, or dextrose as a stabilizing agent are better tolerated because renal tubular cells can metabolize these molecules.


    • Anonymous
      March 9, 2007 at 8:33 pm

      Thanks for your reply. I did look up the site you posted and it’s a great site. I want to send it to the dr.