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By: Kenneth H. Neldner, M.D.

A NAPE member asked about chelation therapy for PXE. My reply turned out to be so long that it has been converted into an article.

Chelation therapy is a controversial treatment that has been around for many years and has been tried in a great variety of disorders ranging from lupus and scleroderma to cancers of many types and locations – to PXE. There are actually very few diseases in the medical textbooks that have not had a trial of chelation therapy.

The treatment consists of a series of intravenous (IV) infusions (each lasting about four to five hours) of a chemical called calcium disodium EDTA, or calcium disodium versenate, or just ETA for short. The schedules vary, but a commonly used method is to have an IV infusion daily for three days, followed by on average of three weeks off and then three more days of IV infusions. This on and off schedule is usually continued for several months.

The mechanism of action of EDTA is to combine with many different elements in the blood and excrete them in the urine. The main elements lost are calcium, chromium, colbalt, selenium, and zinc. However, EDTA has its greatest affinity for lead, so it is the treatment of choice for lead poisoning, particularly as it occurs in children who chew on the lead in painted furniture. Chelation with EDTA is approved by the FDA for lead poisoning, but nothing else. Because of the overall relatively poor results for other conditions and the lack of insurance coverage, there are very few physicians who still offer chelation therapy. Most of the non-physician naturopaths who still do chelation have moved their operation to Mexico where our FDA regulations do not apply.

The major questions are: Does it do anything for PXE and what are the side effects? The second question is much easier than the first because there is very little experience with chelation for PXE. I personally have had only two patients with PXE who chose to have chelation. One patient had significant improvement with Intermittent Claudation (IC) plus more energy and stamina. He made many trips to Juarez, Mexico to get his treatments. The other felt that she had very little improvement, but I do not know how many treatments she had. It seems that if there is to be improvement, many treatments are required.

If chelation does help PXE, it seems that it would be by removal of calcium from the elastic fibers in the blood vessel walls, but this has never been proven. Removal of other elements could possibly have a beneficial effect by interfering with some abnormal enzyme, but this is also speculation.

There is a long list of possible side effects, but in general the treatments are tolerated quite well and adverse effects are reversible if detected early.

Kidney and liver toxicity are the major serious side effects, so it is important to get frequent urine and liver tests while taking chelation treatments. Anyone with previous kidney or liver problems should not have chelation therapy. Total body zinc depletion is possible but rare. It can be followed by checking serum zinc levels from time to time. Anyone receiving chelation therapy should be under the care of someone thoroughly familiar with the procedure and all possible side effects, and also be available to answer any questions that might arise.

I personally find it difficult to recommend chelation therapy for PXE. If anyone is willing to try it at their own risk, they must find someone of good reputation and experience with the procedure and then be willing to undergo a fairly long series of treatments, often at considerable distance from home and considerable cost – usually $2,000 to $3,000 for the IV infusions. If there is improvement, it is difficult to predict how soon it will occur or how long it will last, but it will most likely not be permanent.

If anyone is considering chelation therapy for IC, I would not recommend it as a first line therapy. My first recommendation is an exercise program consisting of walking daily (twice daily is better) as far as possible before the aches and pains develop in the legs. Then stop and rest until the aching is gone – then walk some more until it hurts again. Keep stopping and starting for a half hour total, but try to increase the speed of your walk and keep at least a crude measure of how far you can go without discomfort. With time, you will develop collateral circulation in your legs to get blood flowing around narrowed arteries and restore the blood supply to the leg muscles. As this gradually happens, you will be able to slowly increase your speed and the distance you can walk before discomfort occurs.

Some individuals with IC have found Trental pills (pentoxifylline) to be helpful, but not everyone. They have a side effect of stomach upset, which may limit the amount that can be taken for the dose to be effective. Other side effects include headache and dizzy spells. Many of these adverse effects disappear with continued use.

My request to anyone with PXE who had tried any of these medications – especially chelation therapy – is to please send a note to the NAPE office telling us of your experience. We are very interested in the bad as well as the good. Send information on any kind of treatments you have had for any aspect or complication of PXE. I’ll write a follow up article at some future date based on the information collected. I think it’s important for you to share PXE experiences so you can be of help to each other.

If you missed the upbeat report printed in our last newsletter about chelation therapy, be sure to look on page 4 of Vol. 8, Issue 4, for Barbara Clinkscale’s article. Her address and phone number are included so you can contact her directly for more information.
By: Kenneth H. Neldner, M.D. 9:1 (Spring 2001)