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Bone pain dominant- GDD and DTPA chelation. The greatest number of battles to win the war.

This is an email exchange I just had with a GDD sufferer:

The bone pain issue is always the longest series of battles with GDD to win the war. Bone is the largest and most durable repository of Gd. This means toughest and longest to get out.

One thing I do struggle with is why your Gd levels are so low post chelation. The thing I have been thinking about for the longest time is whether instead of Gadavist you actually had gotten Dotarem/Clariscan or Prohance... But my latest thought, that just came on now. With bone dominant GDD, maybe the obvious thing has happened. Most of the Gd has actually been deposited in your bones (duh - which I am saying to myself since I have not thought of this till now)... and primary Gd removal from bone, even with DTPA; is only minimal, so 24 hour urine Gd levels immediately after DTPA chelation.

This may translate into, treatment-wise: longer intervals between chelation (4 weeks)to allow for more re-equilibration of Gd from bone  back to soft tissues, and if you go with one chelator, use Ca-DTPA, since it removes more Gd than Zn-DTPA.

So monthly  1-day chelations with Ca-DTPA. If the intervals stretch out to 2 or 3 month intervals, then even more secondary Gd removal from bone is allowed for... So if re-equilibration Flare is not intolerable, then stretch it out till then.

The other observation I have made with bone-dominant GDD is that it frequently is paired with a major peripheral nerve involvement. The pudenal nerve is commonly affected in these individuals, and maybe the next most common is the trigeminal nerve. And perhaps the sciatic nerve is most commonly invoilved and this may explain a fair amount of the leg pain. 



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