Whereas underlying symptoms and causes for GDD are fundamentally interesting for sufferers, what people really are most interested in is: "what can I take so I feel better or recover from GDD?"
I intend that this particular blog will undergo frequent revisions as more becomes known about treatments, and the results of treatments. Also with this posting I am reaching out to the global community of sufferers to let me know if they have taken things that have made them feel much better. For a number of reasons, mainly based on science I will likely not post individual recommendations, if they don't clearly make sense to me, unless a number of independent sources report the same benefit.
I take seriously my role as an scientifically accomplished physician not to promote things that may simple reflect placebo effect or that may appear to result in improvement when in fact what may be observed is natural progressive quiescence of an immune system disease, and/or continued urinary elimination of Gd, if it is not challenged again. Primum non nocere. I also am sensitive to the fact that GDD sufferers have an immune system which is highly responsive, and therefore may also be sensitive to others agents tried on them.
What is also critical in the modern age, as we are all aware, is conflict of interest. A number of individuals may be highly influenced by conflict of interest, which is unfortunate, but it is the reality. So I will make sure the readership is aware if I obtain significant financial support from any company or agency. I have no financial support from any company or agency. So all my recommendations are based only on what my learning, experience and publications suggest are the best for patients.
Treatment of GDD logically should involve addressing each of the components of the disease. These include:
1. presence of Gd
2. immune cell reaction
Let us deal with each in turn.
1. The best current method to remove Gd is the use of iv Ca-/Zn-DTPA. By comparison, the thermodynamic stability of Gd-DTPA is 300,000 times greater than Gd-EDTA. Other ligands currently used in GBCAs may also serve well as chelators. Iron chelators (defuroxamine) does not make any sense to me as it is not specific enough for Gd. The problem is the agent has to be administered iv, and hence more intermittently, and fundamentally more painful, inconvenient, complicated and expensive. Theoretically oral agents should be better as they allow more continuous elimination of Gd. which is likely important as Gd presumably leaches out of structures, such as bone, by a slow and continuous process, and to facilitate or accelerate this process may require a more continuous low level blood level of chelator.
2. There are two components to manage the immune system reaction. One is to diminish release of or diminish response to polypeptides released by immune cells (histamine, cytokines, etc). The second is to diminish the direct immune cell activity by macrophages, T-cells, etc.
Reducing/dampening of release of immune cell substances are achieved by agents that are collectively termed antihistamines. Claritin and Singulair may have broader coverage than old school agents like benadryl. Clearly agents with broader coverage to the cytokines released in the presence of Gd are necessary.
Decrease of direct immune cell activity. Two main categories of drugs are: anti-autoimmune disease drugs, and immune modulation/suppression. GDD may coexist with other auto-immune conditions, such as rheumatoid arthritis, psoriasis, Crohn's disease, scleroderma, etc, so treating the auto-immune disease makes sense and may also offer benefit to the effects of GDD. Humira is the classic drug in this category, but multiple agents, also oral, have been developed: Entivyo, Stelara, Cosentyx, Xeljanz. Similarly, immune modulation should decrease the activity of immune cells activated by GDD, hence decreasing disease intensity. Cyclosporin is a drug in this category.
3. Neuropathy is a prominent component in a number of sufferers. Pins and needles skin sensation and muscle fasciculations (vibrations) are effects of neuropathy. Brain fog and some of the head pain may also reflect neuropathies. Drugs that have anti-neuralgia (nerve pain) properties may show benefit for these effects. Agents in this category are Nortriptyline, Amitriptyline, Gabapentin, and Lyrica.
4. Other agents I will list separately, as these do not directly counter the physical/physiological features of GDD. Some supplements make considerable sense, to either replace minerals and increase vitamins, or to increase substances such as neurotransmitters (eg: glutamate) also makes sense.
I am not in a position yet to confidently recommend agents in many of these categories, and I invite health care providers and patient sufferers to contact me about experiences that are especially positive (or especially negative). A larger crowd-sourcing project into this subject is in the planning phase.
What I recommend now. Gd is the source of the problem so enhancing elimination clearly makes sense. So currently iv Ca-/Zn-DTPA makes sense to me. In the antihistamine category I have heard some benefit from Claritin, and this also makes sense to me, maybe in combination with Singulair, but I think agents with better anticytokine properties is essential. I have also heard that Nortriptyline has been beneficial in some individuals with evidence of neuropathy and head pain. It is not clear to me if it should be better than Gabapentin (which is also relatively affordable) or Lyrica. This should be examined in a study setting.