Large peripheral nerve involvement and GDD.
A few individuals point out to me, where there are important gaps in prior blogs I have written. Some also end up writing very extensive questions. It is these types of situations that I will write a lengthy response to them, but the information I think is so important that I craft it into a blog. Since this blog also benefits from the continued knowledge and experience I have gained with treating and consulting for many patients, this may be one of my most important. In general, the recent large blogs are among the most important things to read among the things I have written. This blog covers many subjects, even beyond large peripheral nerves. It may be worth reading 5 times.
The issue of large peripheral nerve involvement with GDD:
1. Pain Management:
I tried amitriptyline 10mg with good pain reduction but had to stop due to eye-related side effects. What medications have you found effective for managing nerve pain symptoms during the waiting period? (Considering options like Cymbalta, oxcarbazepine, or opiates)
I have not to date been convinced that the 'nerve pain drugs' (amitriptyline, nortriptyline, lyrica, gabapentin) are especially effective for this indication. That said they may be worth a try. Of the 4 I mention gabapentin has the lowest side effects. Also the bonus it has sedative properties so is a good sleep aid at night. I would try gabapentin. I generally though like tried-and-true old school, anti-inflammatories: enteric-coated aspirin and advil. Take these at recommended dosages. Natural type anti-inflammatories: for example turmeric, ginger and fresh cut pineapple are worth also starting with because of their high safety profile. Possibly the supplement Gaba, can also be considered. Often times with the actual drugs, trials of effectiveness, also considering side effects, needs to be performed. So short answer: Gabapentin at night (start 100 mg can go to 200mg). Advil/ enteric coated aspirin during the day. Turmeric, pineapple (and others) all the time as part of your diet routine.
2. Treatment Frequency:
What would be the ideal chelation frequency for predominantly nerve symptoms - weekly, bi-weekly, or monthly?
Gd removal in the setting of large peripheral nerve involvement (trigeminal/vagus/ sciatic/ pudendal) tends to occur at a slower rate, and symptoms improve more slowly, than most other GDD symptoms (except bone pain, also very slow). So whereas most pains start resolving by chelation session 3 (even chelation session 1) and certainly become noticeable by chelation session 5, significant noticeable improvement may not be appreciated till chelation session 8. In bone empirically the delay makes sense: most of the Gd is there, and it is the most durable reservoir (tough to get out of the durable matrix of bone). In large peripheral nerves it is not clear to me at this point why this is the case, perhaps the size of the nerve means more Gd can be deposited there, perhaps there are more locales that Gd will be deposited in (not just synpases, but more in larger/ thicker nerve sheaths, more additional types of cells involved. Removal from durable locations usually benefit/ require more the removal through re-equilibration. Therefore 3 -4 week intervals between chelations - I recommend 3. This is especially the case when there has been few GBCA injections. The consideration differs when the person has received many GBCAs (> 5 and certainly > 10) where too much re-equilibration between sessions can result in massive re-equilibration Flare. So in your case I would recommend every 3 weeks.
3. Treatment Definition:
When you mention one "session" of chelation, does this include both CaDTPA and ZnDTPA, or is each DTPA administration considered a separate session?
In the strictest sense one session is full dose CaDTPA day 1 and full dose ZnDTPA day 2. Often though I blur them altogether as 1 chelation session, for simplicity. Also quite often it is the frequency of chelation that has nearly as important a role as the amount. Also some p[oeple with either small size or extreme sensitivity to Gd cannot tolerate full regimen. Others don't tolerate ZnDTPA well. So some tweaking is almost always necessary. But if you wanted to use a corrected approach: 1 day ZnDTPA alone is the equivalent of 2/5 of 'one session' and full dose CaDTPA 3/5. Taking these at 1/2 dose, also 1/2's again the amount to be considered as equivalencies to '1 session'.
4. Additional Medications:
What medications are typically prescribed during and between chelation treatments? What are their side effects?
I generally use just methylprednisolone as the immunity suppressor and atarax as the antihistamine. Things from pt 1 above can be added in, especially the dietary things are 'all the time'. If not much improvement is observed after 5 or so chelations I will in a number of individuals add in low dose Naltrexone (LDN). Other things are works in process and more proprietary still.
5. Mechanism of symptoms:
Is the nerve pain from direct gadolinium damage or an autoimmune response? Are there specific markers my immunologist should test for?
It is both direct injury and immune response. What to test for is still work in progress.
6. Safety Profile:
Your professional opinion on DTPA safety? I understand ZnDTPA is considered safer than CaDTPA (which can be dangerous if administered improperly).
DTPA is basically as safe as any drug we use in medicine. The whole concept of DTPA in all the forms is administered, eg: Gd-DTPA, Tc-DTPA, the DTPA is the safe part of the molecule, that renders the entire drug /more safe'. However in the setting of GDD, the removal of the Gd by DTPA is where the Flares come in. If the Flares are not properly managed, then it can be a disaster. This is why expertize on the part of the practitioner is important. What GDD has though taught us: nothing is 100% safe- but DTPA approaches that 100% better than almost everything else you can get by iv. CaDTPA you cannot give more than once per week, unless in an emergency situation (eg: Plutonium exposure), because it removes native metals, and restoration of those generally takes 5 days by your body on its own. Since ZnDTPA does not remove native metals, it is fundamentally safer than CaDTPA which does. Some people however do not tolerate Zn-DTPA well. My theory is it throws off the balance of supply with metalloproteases.
7. Exercise:
Weight training used to help my back issues but now triggers severe nerve pain for days. What exercises have you found safe for patients while avoiding muscle atrophy? (Walking and light elliptical seem okay).
I never recommend heavy exercise with GDD, this may extend to forever. The metabolic acidosis of heavy exercise exacerbates the symptoms of GDD. So yoga, Tai Chi, walking, maybe gentle elliptical. As your condition improves you can escalate the amount of exercise. Start with everything in moderation.
8. Legal Experience:
Have any patients successfully pursued legal action regarding inadequate informed consent about different contrast agents and their retention rates? Given limited recognition of GDD, what should I realistically expect?
I always recommend: "let us start by getting you better". At some point soon, all parties involved should be held accountable if they do not provide informed consent about the possibility of GDD. I think especially in the setting where the individual already has GDD and then gets another GBCA, because this always makes the condition worse. MRI centers, radiologists, referring doctors who use MRI a lot (eg: neurologists) at this point in time, today Nov 2024, must know about GDD. I consider this the sad and ugly aspects of medicine, but maybe essential to effect change. The unfortunate aspect of human nature: one doesn't learn things unless one s held truly accountable. Successful action is in the earliest stages.
9. Treatment Logistics:
How long should patients typically stay for chelation treatments? If the visit involves two sessions and a urine check, would 3-4 days be sufficient?
If flying in,, most subjects can leave the afternoon of the last day of chelation .. if chelation is done correctly.
10. Treatment Timing:
I'm starting a new job with limited sick leave (3 days per month, currently at 0).
Would you recommend:
a) Building up sick days first and then starting consistent treatment, or
b) Starting treatment as soon as possible, accepting potential gaps between sessions?
I recommend generally starting sooner than later, although one can wait till 3 months post start of GDD (this has been often my recommendation anyways). 6 months to 1 year may be optimal timing if you wanted to give a good effort to see if you recover on your own. This generally for people with (i) mild GDD, (ii) some spontaneous improvement by 3 months, and (iii) just 1 GBCA administration.
Large peripheral nerve pain often is not mild GDD.
Richard Semelka, MD