Will I get NSF?
I have heard this question recently quite often, so I thought to respond to it in a blog. If you have normal kidney function, received GBCAs, and are sick with symptoms of GDD, the short answer is no.
As I have opined in an earlier blog is NSF really just GDD in a patient with advanced renal failure. I am not sure, but I think no. In large part my answer is based on the lesser number of symptoms that NSF patients have been associated with, but this may be an artifact that the peripheral glove and sock skin woodiness and joint contractures have been so dominant of feature that other symptoms have been overlooked. That is why I have told NSF experts to look again at their patients to see if they have the additional symptoms.
What are these differences:
1. brain fog not described/emphasized in NSF
2. pins and needles not described/emphasized in NSF.
3. central symptoms: pins and needles, bone pain (in central bones, such as ribs) not described/emphasized in NSF.
4. onset within minutes/hours not described/emphasized in NSF.
The central picture of NSF is advanced renal failure (stage 5 or severe acute renal failure) and the use of the weak linear GBCAs: Omniscan, Optimark, Magnevist.
Extremely, extremely rare examples with other agents, Gadavist.
Some individuals have mentioned: but I have heard of NSF in a patient with normal renal function. I think this is very unlikely, I think they are describing GDD.
I am very skeptical of things that I read or hear unless I have specifically studied the case. Most people, this includes (maybe especially) radiologists and pathologists may not be experts in something, and because they have called something, something, does not mean it is true.
So, working on the basis that NSF may then be distinct from GDD, the fact that the cells responsible have been described as 34+ circulating fibrocytes, then maybe NSF results from primary (or sole) activation of chronic immune system cells: circulating fibrocytes and other bone marrow derived cells.
NSF can have a full range of severity of disease, as we know GDD can have. So simply having GDD and not NSF is not necessarily a great thing> GDD, in rare cases, can be even more severe than NSF. So NSF is not a diagnosis boogey man.
I have written about the features of GDD, both A symptoms (which are distinctive) and B symptoms (that are frequent but also seen with a wider array of other diseases).
1. you have near normal kidney disease, you have GDD.
2. if you have the broader array of symptoms of GDD, you have GDD.
3. if you had onset within minutes of GBCA injection, you have GDD.
4. if you have developed it from stable agents not associated with NSF: Multihance, Prohance, Dotarem, you have GDD.
On the positive side, whereas NSF appears to have stimulated release of pro-fibrotic cytokines, GDD appears to have stimulated primarily pro-inflammatory cytokines. This translates into that severe fibrosis is very rare in GDD, and the hallmark of NSF.
On the positive side, there is clear treatment that works well for GDD: chelation with Ca-/Zn-DTPA. But critical to pay attention to what I have written about the essential concurrent use of FRAME drugs in many patients: otherwise chelation alone can be a disaster. And that AMASE drugs is probably also important/essential for many.
GDD appears to stimulate the full array of immune system cells, hence why I call it very much like a persistent acute hypersensitivity reaction with recruitment of chronic immune system cells.
Overall GDD is much, much less severe than NSF.
I am very cautious-critical (yet friendly)in evaluating what is reported in the literature. This comes from having written 360+ peer-reviewed articles and serving as a reviewer and editorial board member for many journals for 20+ years, and also by knowing quite well the full range, positive and negative aspects, of the areas I review on.
So when I hear: some one with normal kidney function has developed NSF, I think 1000 to 1 it is because the diagnosis is incorrect.... maybe 100,000 to 1. So not impossible but extraordinarily unlikely.
But the other question not asked: if I have advanced renal failure, could I develop GDD and not NSF - on the surface I would have to say: why not, it is possible. This is unless there is some specific aspect of advanced renal failure that the host immune system stops reacting by releasing pro-inflammatory cytokines and can effectively only release pro-fibrotic. This is conceivable and may explain why NSF and not GDD occurs in advanced renal failure.
So, normal kidneys, could I have NSF. Essentially NO.
Stay tuned on the latest advancements: