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

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.

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.
Kelly

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.

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

Lori,
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.

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.

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.

Kelly

Hi Lori,

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

[url]http://www.medscape.com/viewarticle/410629_3[/url]

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.

cd