As you read more of the published articles about NSF, GBCAs and gadolinium, you will find a lot of confusing and at times conflicting information. One thing I realized while doing my research is that it is important to consider when the article was published. It wasn’t until 2006 that the connection was made between NSF and GBCAs, and as time has gone on some of what was said in the earlier articles has been further evaluated which resulted in new facts emerging.
To my knowledge, no one has been cured of NSF, but some patients with severe renal disease have seen an improvement of their symptoms after kidney transplant and dialysis. I think when we talk about NSF we also need to remember that it isn’t just a disease that affects the skin. A patient with confirmed NSF will in all likelihood have extensive internal fibrosis and calcification of tissue going on. Unfortunately there aren’t any good methods to conclusively evaluate the extent of that damage so we don’t know if transplant or dialysis has any affect on it or not.
I don’t believe that anyone can honestly say what someone’s chances are of getting NSF/GASF after just one dose of contrast. However, I can tell you that we have several group members who only received one dose and they have experienced a variety of unexplained symptoms since they had their MRI or MRA. But what most of us have seen is that the intensity of some of our early symptoms tends to lessen as time goes on. I know that has happened to me. Unfortunately in my case I appear to have several body systems where I believe retained gadolinium is causing problems to get progressively worse. For me some of those areas where things have been progressing include my eyes, GI tract – especially my esophagus, thyroid gland, brain, underlying tissue on my face and throat, and my vascular system. (On March 19, 2014, it was 4 years since my 5th (and last) dose of contrast.)
Personally, I believe it is doubtful that those of us with normal renal function will go on to develop symptoms that are consistent with full-blown, biopsy-confirmed NSF. I say that because more than likely none of us retained the amount of gadolinium that a patient with severe kidney impairment retained. I believe if we were retaining as much as they did that we would hear more about severe skin changes in patients with normal renal function and we aren’t. That doesn’t mean that some of us don’t have skin changes and signs of fibrosis and calcification because we definitely do, but it isn’t as severe or widespread as what has been seen in NSF patients.
As far as what might happen to us later in life if we go on to develop kidney problems – From what I have read in the literature, it appears to me that many of the researchers were always trying to link gadolinium-related issues to a patient’s level of kidney function. They did that because everyone was working under the belief that “NSF” could only happen to a patient with bad kidneys. As time went on they proved that patients with normal kidneys were retaining gadolinium too and now it’s believed that every exposed patient retains at least 1% of the injected gadolinium even if their kidneys were perfect and they didn’t have anything else going on to cause them to retain gadolinium. They also know that the primary place where gadolinium will ultimately deposit is in our bones. So researchers know that it’s there and they are trying to think through how it might be released back into circulation and then what will happen when it is back in circulation within our body. As far as I know, no one knows for sure.
The best advice I can give you is to always try to confirm what you read or what you’re told by others – including me. And please never take anything that anyone tells you as medical advice. You need to always consult your own doctor and do your own research too.
That is great insight. Now we can see what happens with a comment