Alternative Explanation-Diamox

Below is a link to a research article from South Africa. To put it in context, I will give a little background on acetazolamide (Diamox) and RP....

1) Your RS will view this from a "majority of the evidence" perspective. This is the difference between being a doctor and a patient. S/he will tell you acetazolamide was used to treat CME associated with RP. They will tell you this is the reason why visual acuity improves in those with RP and CME who use Diamox (generic name acetazolamide).

2) There have been studies that have shown acetazolamide improves visual function in those who have RP but no CME. See the following link for more info:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=8425835&dopt=AbstractPlus

Okay, so what gives? If the standard line of thinking among the RS community is correct, and acetazolamide only works because it helps the CME (and is replaced by other drugs now) , then WHY is it helping people with RP who do not even have CME?

That means either:

a) The researchers who reported the visual measures improved in people with RP and no CME while on acetazolamide were not telling the truth OR

b) The "significant peripheral field gains" in 3 out of 13 no CME/ RP patients was due to some testing flaw not experienced by the controls OR

c) Our three out of thirteen visual field testing rock stars were all just having a bang up day OR

d) There is another factor influencing the improvement in visual field gains in the RP no CME folks.

So since I come from the "weigh the risks and give it a whirl" versus a "preponderance of the evidence" school of thought, I decided to keep digging. The link below offers an alternative explanation for the effectiveness of acetazolamide in treating RP.

http://www.ncbi.nlm.nih.gov/pubmed/15295099?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

A possible explanation from a genetic perspective:

http://www.ncbi.nlm.nih.gov/pubmed/17652713?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

The authors of this case study also make a case for an alternative explanation and increased potential of this drug in RP:

ARTICLES AND REPORTSLong-term effect of acetazolamide in a patient with retinitis pigmentosaJC Chen, FW Fitzke and AC Bird Department of Clinical Ophthalmology, University of London, England.The authors studied the therapeutic effect of acetazolamide on a patient with autosomal dominant retinitis pigmentosa complicated by retinal edema. In addition to reduction of macular edema and some improvement of central vision, they found an unexpected progressive increase in extrafoveal retinal sensitivity with prolonged medication. It is proposed that the therapeutic effect is mediated by alteration of retinal pigment epithelial function and that disturbed polarity is restored to a more normal state. 12

So what if our "preponderance of the evidence" thinkers are wrong? What if the British case study explanation above can be further supported by the technical details in the South African article? WHAT IF THEY ARE RIGHT? And I am sitting here not at least trying a drug available on every corner within a five mile radius of my house? The acetazolamide, not the other one commonly used for glaucoma by old ladies in garden clubs. :)

I guess this drug is very difficult to take. Well, I know people with glaucoma who have been on it for decades and are happy to have vision. Everyone's body is different. There is no way to know how it will affect a person until they try it. It is not like it is an opiate.

The problem is there is no creativity in medicine because everyone gets sued. A lot. Sigh....