meds - going it alone

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

What prevents you from self medication via offshore pharmacy?

Concern over quality or content of the medication
10
59%
Don't want to medicate without medical supervision
4
24%
I am happy with the treatment from my neuro or PCP
2
12%
Scared of doing something illegal or getting ripped off
1
6%
 
Total votes : 17

meds - going it alone

Postby feesher » Fri Jan 14, 2005 7:36 am

This is not an endorsement of any kind of self medication. But let's face it - it's there as an option. One could always order LDN or minocycline from overseas over the web.

Here's a poll...
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Postby OneEyeBlind » Fri Jan 14, 2005 7:54 am

Freesher,

Seems that the feelings are fairly unanamous! Interesting..
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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Postby flora68 » Fri Jan 14, 2005 8:26 am

One could always order LDN or minocycline from overseas over the web.


I'm confused. Why would anyone want to order LDN from overseas? Why bother?

It's so inexpensive anyway, that it might be cheaper to buy it here!

Not to mention the fact that not all LDN is prepared correctly. If I take LDN, I'll use Skip's Pharmacy, or another of the few with a solid track record of compounding LDN with the right binder, etc.
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Why?

Postby feesher » Fri Jan 14, 2005 12:20 pm

For example with LDN, not everyone is having success with their neuro or PCP to get it prescribed. There are instructions to make your own, so it's out there as an option.
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Re: meds - going it alone

Postby Alabama » Fri Apr 25, 2014 12:38 pm

As stated my concerns with legality, yet when a Doctor prescribe the need, and the cost in the US exceeds our home budget expenses (Avonex $4000.00 mth) does this leave many families in the US when options? There are many American Drugs with cost like Avonex, I am not knocking the cost of these manufacturers to develop these very effective new drugs but when families need medication what options are they; Try it or get Sicker and Die? I grew up thinking that $200.00 for a prescription was a outrages price, My views have totally changed when I turned 60yrs. two years ago and was diagnosed with MS. It was then I started to learn about others and their cost for there drugs to help with there life on a day to day basis.

Americans I ask that you at least think about the cost of manufacturing these drugs and yes the US needs jobs like these, but Earth and all of the sick people World Wide, does America need to readdress what it gives to other countries for political, health and others reasons, when it could be used for making American citizens healthier and more capable to helping these other countries!!!!!

To set the record straight, my Neurologist provided me with a group to assist me financially with Avonex, I have it free for two years. I will lose the financial support in 2015, I have no idea what will happen then.

Whats I think is important are the others with very high medical expenses with MS and other serious conditions.
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Re: meds - going it alone

Postby want2bike » Sat Apr 26, 2014 6:07 am

According to Dr. Bergman LDN is the only drug he has found which helpful in treating MS. It is cheap so the doctors do not like it. He says to use the drug until you get your body healthy again by following his program. You follow his program and get your body healthy you will not need any drugs. Using Avonex because it is free is not a good reason for using the drug. Like the drug dealer giving you cocaine until you are hooked. There is a study showing the MS drugs do not work.

http://www.youtube.com/watch?v=zGmyUppmt-g

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!
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Re: meds - going it alone

Postby HarryZ » Sat Apr 26, 2014 6:27 am

want2bike wrote:According to Dr. Bergman LDN is the only drug he has found which helpful in treating MS. It is cheap so the doctors do not like it.


So Wanna, all drugs made by pharmaceuticals are not "bad". Some are OK...as long as Dr. Bergman says so! And if another doctor prescribes LDN for your MS, then that doc is OK and not part of the criminal doctor group you say exist.
And if the drug is "cheap", the docs don't like it...makes sense to me!
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Re: meds - going it alone

Postby Kronk » Sun Apr 27, 2014 8:51 am

want2bike wrote:According to Dr. Bergman LDN is the only drug he has found which helpful in treating MS.


"Doctor" Bergman is a CHIROPRACTOR! He doesn't treat MS. He makes silly YouTube videos based on fractional evidence to support his outlandish claims for attention.

http://www.bergmanchiropractic.com/

Hey guess what everyone, eat more veggies and less red meat. I am a genius... Only problem is everyone knows that, but people lack the will power to follow it. And simply following a healthy diet will not cure you of any illnesses. The human body is not made perfect, there are defects that cannot be cured with eating additional Carrots and Kale. I find it offensive that this moron suggests my diet is to blame for the onset of my illness... how do Vegans get MS, or Cancer? How do babies get Maple Syrup Urine Disease or worse.

RIDICULOUS!
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Re: meds - going it alone

Postby HarryZ » Sun Apr 27, 2014 12:19 pm

RIDICULOUS!


Beyond ridiculous, Kronk! People like Bergman prey on the Wannas of the world who can't seem to understand how irresponsible he is. If Bergman jumped off a bridge, Wanna would be right there beyond him!!
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Re: meds - going it alone

Postby DrGeoff » Sun Apr 27, 2014 2:38 pm

OK, shall we take a really close look at this Dr Bergman?
In the "Staff" section of his website (just follow the link that Kronk provided), we find this statement attributed to Dr Bergman's son John:

I'm currently attending Cleveland Chiropractic College in Los Angeles to get my Doctorate in Chiropractic.

Now the website is Copyright: Bergman Family Chiropractic © 2014
What is the significance of this, you may well ask (unless you are some sort of Wannabe)?
Just this - the Cleveland Chiropractic College in Los Angeles closed in August 2011.
So, if Dr Bergmann does not know where his son is studying, is is likely that he knows Jack about anything else?

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Re: meds - going it alone

Postby centenarian100 » Sun Apr 27, 2014 10:46 pm

want2bike may be right about this case

Alabama is over 60 years old and may not have relapsing multiple sclerosis...in which case the benefits of avonex are doubtful. There are multiple negative interferon progressive multiple sclerosis trials

For instance:


La Mantia L, Vacchi L, Di Pietrantonj C, Ebers G, Rovaris M, Fredrikson S, Filippini G. Interferon beta for secondary progressive multiple sclerosis. Cochrane Database Syst Rev. 2012, Issue 1. Art. No.: CD005181. DOI: 10.1002/14651858.CD005181.pub3.

Rojas JI, Romano M, Ciapponi A, Patrucco L, Cristiano E. Interferon Beta for Primary Progressive Multiple Sclerosis. Cochrane Database Syst Rev. 2010, Issue 1. Art. No.: CD006643. DOI: 10.1002/14651858.CD006643.pub3.

Also, avonex is probably the least effective "DMD" and lost to copaxone in the CombiRx trial and to betaseron and rebif in separate older head to head trials.

For those who are curious, when want2bike says that "there is a study saying that interferons don't work," he is referring to studies like this:

http://www.ncbi.nlm.nih.gov/pubmed/22797642

These studies are nonrandomized, and it is well known that more disabled MSers and MSers with higher disease activity are more likely to pursue DMDs. In randomized trials in RRMS, the beta interferons have produced a modest but consistent effect on relapses, MRI outcomes, and short term disability ("sustained disability progression").
However, trials like the one linked above do suggest that beta interferons are by no means miracle drugs, and their efficacy in preventing long term disability is questionable.

To alabama, caveat emptor. Discuss risks and benefits with your doctor, and do your own research.
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Re: meds - going it alone

Postby HarryZ » Mon Apr 28, 2014 7:08 pm

Not sure what you have read or not read on this forum but it's no secret that the DMDs have very minimal effect on MS and are prone to all kinds of side effects. Very expensive to take and little efficacy on MS makes them a poor choice. Wanna's comments about them are old history.

It's all the other ludicrous comments that he makes that don't belong on this forum.
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Re: meds - going it alone

Postby centenarian100 » Mon Apr 28, 2014 10:07 pm

HarryZ wrote:Not sure what you have read or not read on this forum but it's no secret that the DMDs have very minimal effect on MS and are prone to all kinds of side effects. Very expensive to take and little efficacy on MS makes them a poor choice. Wanna's comments about them are old history.

It's all the other ludicrous comments that he makes that don't belong on this forum.


I am well aware of the general sentiment of this forum against the medical establishment. I don't think your statement is accurate for all MSers (except for the expensive part).

For instance, for a young person with low disability and highly active relapsing remitting multiple sclerosis who happens to be JCV Ab negative, tysabri is often highly effective (at least in the short run), well tolerated, and safe.

Of course, it is very expensive (especially in the united states), but if you have health insurance and don't have to absorb the entire cost, you probably wouldn't be too concerned about this.

You've never been to any NMSS meetings and talked to people who think tysabri is a miracle drug?

I think what you're saying is fairly accurate for CRAB drugs in people with non-relapsing MS or people with aggressive MS.
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Re: meds - going it alone

Postby HarryZ » Tue Apr 29, 2014 6:02 am

I am well aware of the general sentiment of this forum against the medical establishment. I don't think your statement is accurate for all MSers (except for the expensive part).


Of course my statement is not accurate for all MS users. When it comes to MS, as we well know, there isn't one statement or medication that would fit everyone. My comment was meant to cover the group in general and in general, the use of DMDs is not very effective. The University of British Columbia did a long term study (several years) to compare DMD users vs those who didn't take any medication and found that there wasn't any real benefit for those who used the DMDs.

For instance, for a young person with low disability and highly active relapsing remitting multiple sclerosis who happens to be JCV Ab negative, tysabri is often highly effective (at least in the short run), well tolerated, and safe.


The big concern here is "for the short term". Long term use of Tysabri is not known and they are discovering more and more abnormalities for these users as time goes on. If you want to call Tysabri safe then by all means do so but the PML danger and long list of side effects for this drug continue to escalate. We know that the "reported" cases of PML sit at 454 but there are others who say it is several times that. Cheer has posted information about this in another thread.

Of course, it is very expensive (especially in the united states), but if you have health insurance and don't have to absorb the entire cost, you probably wouldn't be too concerned about this.


How can the CRAB makers justify the continuing increasing costs of these drugs that have been out since the early 90's? Most drugs that have been available for this length of time have dropped in cost and/or have become generic But not these ones...well protected by Orphan Drug status that continue to bring in billions of dollars for their manufacturers!

You've never been to any NMSS meetings and talked to people who think tysabri is a miracle drug?


Of course some people think Tysabri is a miracle drug. The same as some people who say that they control their MS through diet, life style and alternative drugs such as Prokarin. There are also those who have tried Tysabri and become violently ill and say that diet with MS does nothing. Again, there is nothing that covers everyone when it comes to MS. What works wonders for one can severely injure someone else. When it comes to MS, it is a disease of unknown etiology and nobody has been able to prove how it starts.

But all of this has been known for a very long time. It's Wanna's ongoing ludicrous comments about medicine in general that don't belong on this forum. Saying that the FDA are all criminals and that following standard medical practices is a waste of time and will eventually make you sicker is simply irresponsible.
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