Peter,
Hopefully you'll never end up with a chronic disease and have to make one of the toughest choices a person has to make. Do I believe big pharma and the science or go the alternative route and follow the anecdotal evidence? Until a person personally walks in those ms shoes I'm not sure they can say which way they would go.
You are absolutely right of the difficulty in making a decision in this circumstance. My wife has made the same statement to me many times and she has suffered from MS for over 30 years!
If big pharma could be trusted the decision would be easy but what we have seen in the past number of years is that they can't. One only needs to look at Warner-Lampert who are under criminal charges for their disgusting fraud with Neurontin. Another problem is that the MS patients' docs don't always properly discuss with them all of the possible treatments available. In many cases they simply tell the patient that they are going to be prescribed "this drug" and the docs don't even bother to tell them much about the drug that they are going to use.
On the Cochrane report I still have a hard time accepting their results. Somehow the inclusion of the PP study in with the RR studies in a drug approved for RR seems counterintuitive. Wouldn't you use only RR data if you were studying a drug approved for RR? It looks like an apple & oranges kind of thing to me.
The Cochrane people looked at Copaxone overall, including ALL the trials they did for its effect on all MS. From what I have read, the vast majority of the trials were for RRMS. They came up with their unbiased report and I have a tendency to believe them far more than Teva. The Cochrane people have nothing to gain, especially monetarily from this report and everything to lose because they knew what kind of reaction they would get from the established MS world of medicine. Interesting to note that the recent response from the "established MS world" centred on continued support for Copaxone and the CRAB drugs but it did not appear to challenge the technical info that the Cochrane report stated.
It certainly does leave the MS patient out in the cold as to whom to believe.
The Cochrane report did say one interesting thing:" Glatiramer acetate did not show any significant effect on disease progression, measured as a sustained worsening in the Expanded Disability Status Scale (EDSS). On the other hand, a slight decrease in the mean EDSS score, driven by a major study, should be considered " Is it just me or is this a contradiction?
I guess it all depends on what their intent was here. I think the overall bottom line is that they stated that Copaxone simply wasn't beneficial based on the data that they reviewed.
If LDN is as good as Copaxone and Copaxone is no good, how good is LDN?
You have to take this statement within the context of which it was written. That is the difficult part of understanding what a person means on the internet. The validity of LDN's anecdotal effect was questioned. I was merely quoting an internet survey that was done by a statistician who compared what info he got with LDN to that of published data on Copaxone. The results were the same. Based on this, I would prefer taking LDN which is far less expensive, has few if any side-effects and extremely easier to administer.
The LDN data was simply a survey...certainly not scientific. Copaxone's data has been challenged by the Cochrane report. If you use the lowest common denominator here and state that neither drug can show effect, I would still use LDN and avoid all the pitfalls of using Copaxone.
With the caffeine in Prokarin it's not a surprise that it helps with fatigue. When I'm fighting ms fatigue a couple pots of coffee usually gets me going. I wonder how Prokarin would do in a head to head with Jolt chewing gum.
You know, Peter, this perception about Prokarin is one of the most misunderstood parts of the medication and some docs make the same ignorant(please don't take this word in a derogatory manner) comment about it. Often they will suggest you stop at Starbucks along the way and get the same kind of reaction!!
Now let me give you the scientific information. Prokarin uses caffeine citrate in it. The drug is used solely to control the metabolism of the histamine diphoshate into your system. Otherwise, the half-life of histamine diphosphate is about 50 minutes and if allowed to break down uncontrollably, it is of little use to you. The amount of caffeine citrate in a daily dose of Prokarin would be equivalent to sipping on ONE cup of coffee over a 16 hour period. And that assumes you absorb 100% of the Prokarin and that rarely, if ever, happens. Now if that gives any MS patient a continuous buzz and avoids fatigue, then I suggest they dump all their meds and drink a lot of coffee during the day
)
Another fact.....during the Prokarin double blind trial, the patients on placebo had a higher caffeine blood serum level than did the patients on the Prokarin. Nothing like scientific fact to destroy humorous fiction!!! THe docs that highly criticized the trial conveniently overlooked the data that was clearly written in the actual study.
Again, I never tell a MS patient what they should take...I always strongly advocate that they demand their doc to go over all the possible medications with them and allow the patient to become part of the decision making process. That, unfortunately, doesn't happen as much as it should. And I still don't trust the pharmaceutical industry when it comes to telling everything about their drugs.
Harry
