This is fascinating!!!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: This is facinating!!!!!

Postby Jugular » Sat Sep 10, 2011 10:07 am

Even though I am convinced of CCSVI's link to MS though it lies on the doorstep of accepted and proven treatments, knocking to get it, I do still prefer placebo controlled double blind studies to support my MS treatment decisions. Dania's links point to a mass of supportive studies on the efficacy of Daflon 500mg in the treatment of CSVI. Including this gem:

A double-blind, placebo-controlled trial of a new veno-active flavonoid fraction (S 5682) in the treatment of symptomatic capillary fragility.

The efficacy and safety of a new veno-active flavonoid fraction (S 5682) consisting of micronized diosmin (90%) and hesperidin (10%) have been studied in 100 patients with symptomatic capillary fragility in a double-blind, randomized, placebo-controlled trial. Treatment lasted 6 weeks and consisted of 2 daily tablets of either S 5682 or placebo. Patients were examined at weeks 0, 2, 4, and 6. Compared to placebo, capillary resistance, assessed by the negative suction cup method, was significantly higher in the S 5682 group at week 4 (219 +/- 10 mmHg versus 159 +/- 8 mmHg; p < 0.001) and week 6 (261 +/- 12 mmHg versus 163 +/- 9 mmHg; p < 0.001). This resulted in a significant improvement of symptoms of capillary fragility (spontaneous ecchymosis, epistaxis, purpura, petechiae, gingivorrhagia, metrorrhagia and conjunctival haemorrhage) in S 5682 treated patients (p < 0.001). S 5682 was well tolerated. The rate of side-effects spontaneously volunteered by the patients was similar in both groups. We, therefore, conclude that S 5682 increases to a large extent the capillary resistance in patients with abnormal capillary fragility without significant side-effects.


Though other homemade concoctions of similar acting substances might be expected to be equivalent with less of this or more of that, once again these are proven results.

And as the above study underscores vasoconstriction may mean different things in different contexts and so in the sense of stopping capillaries from leaching their contents into our brains etc it may be a good thing for us. Also given the supposed prevalence of occued jugulars in the general population, one would expect dizziness, fatigue and cog fog to be reported side effects (classic symptoms associated with constricted jugular), yet none seem to be reported.
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Re: This is facinating!!!!!

Postby HappyPoet » Sat Sep 10, 2011 11:33 am

The Google Scholar Search Results Page for the search terms 'daflon' and 'jugular' shows this information in the first hit:

Google Scholar Search Results Page wrote:A Thapar, TRA Lane, V Pandey, J Shalhoub… - …, 2011 - phleb.rsmjournals.com
... prior venography revealed a short segment stenosis at the junction of the left internal jugular and brachiocephalic veins that had been venoplastied with a 10 x 40 mm balloon at 10 atmospheres. Postoperatively she received dagibatran 220 mg, aspirin 100 mg and daflon 1 ...

I really wanted to know why she was given Daflon after her IJV thrombectomy, so I clicked on the link and was sent to the abstract of the September, 2011, issue of Phlebology; unfortunately, the abstract didn't discuss Daflon. Does anyone have access to the full text of the study?

Imperial College CCSVI Investigation Group wrote:Internal jugular thrombosis post venoplasty for chronic cerebrospinal venous insufficiency
http://www.phleb.rsmjournals.com/conten ... 4.abstract

Abstract

Chronic cerebrospinal venous insufficiency (CCSVI) is a hypothesis through which cerebral venous drainage abnormalities contribute towards the pathogenesis of multiple sclerosis. CCSVI venoplasty is already practised worldwide. We report the case of a 33-year-old lady with multiple sclerosis who underwent left internal jugular venoplasty resulting in iatrogenic jugular thrombosis requiring open thrombectomy for symptom relief. This occurred without insertion of a stent and while fully anticoagulated. Clinicians should be aware that endovenous treatment of CCSVI could cause paradoxical deterioration of cerebral venous drainage. Patients with complications post venoplasty are now presenting to geographically distant vascular units.
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Re: This is facinating!!!!!

Postby Cece » Sat Sep 10, 2011 3:31 pm

HappyPoet wrote:The Google Scholar Search Results Page for the search terms 'daflon' and 'jugular' shows this information in the first hit:

Google Scholar Search Results Page wrote:A Thapar, TRA Lane, V Pandey, J Shalhoub… - …, 2011 - phleb.rsmjournals.com
... prior venography revealed a short segment stenosis at the junction of the left internal jugular and brachiocephalic veins that had been venoplastied with a 10 x 40 mm balloon at 10 atmospheres. Postoperatively she received dagibatran 220 mg, aspirin 100 mg and daflon 1 ...

I really wanted to know why she was given Daflon after her IJV thrombectomy, so I clicked on the link and was sent to the abstract of the September, 2011, issue of Phlebology; unfortunately, the abstract didn't discuss Daflon. Does anyone have access to the full text of the study?

The patient in that article is a TIMSer. She might know.

www.thisisms.com/forum/chronic-cerebros ... ml#p172238
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Re: This is facinating!!!!!

Postby HappyPoet » Sun Sep 11, 2011 2:27 am

Cece wrote:The patient in that article is a TIMSer. She might know.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17442.html#p172238

Thanks for jogging my memory, Cece. I wonder if she was given Daflon to help control bleeding in her context? What's your guess? I do hope she'll see these posts and will answer some of our questions.

Perhaps there is more than one role for Daflon: 1) to help control bleeding via vasoconstriction, 2) to help inhibit leukocytes, 3) to decrease valvular remodeling, and 4) to help inhibit "capillaries from leaching their contents into our brains" via vasoconstriction (Jugular's last post).

She is a very special lady, and now her case is helping us in ways I believe all MS pioneers feel is important when we opt to try something new in our war against MS tyranny--that our individual and collective CCSVI procedure(s) will somehow help further CCSVI research, will help doctors toward finding best practices for best outcomes, and will help future MS patients not to suffer all the ways we suffer now.

Question for readers of the thread:
Why would Google be able to retrieve and show text that includes the word "Daflon" and other text (e.g., short segment), but the word and other text doesn't show on the public abstract page at the Phlebology site??? Why/how can Google see more than we can see? Hope this makes sense!
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Re: This is facinating!!!!!

Postby daniel » Sun Sep 11, 2011 3:21 am

HappyPoet wrote:Question for readers of the thread:
Why would Google be able to retrieve and show text that includes the word "Daflon" and other text (e.g., short segment), but the word and other text doesn't show on the public abstract page at the Phlebology site??? Why/how can Google see more than we can see? Hope this makes sense!


Google uses many 'metrics' to try and figure out what a page is about, including but not limited to the anchor text used to link to pages but also tries to find how often certain words are mentioned together and will display similar pages if it can't find enough content with the actual word searched for...
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Re: This is facinating!!!!!

Postby Cece » Sun Sep 11, 2011 8:22 am

HappyPoet wrote:
Cece wrote:The patient in that article is a TIMSer. She might know.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17442.html#p172238

Thanks for jogging my memory, Cece. I wonder if she was given Daflon to help control bleeding in her context? What's your guess? I do hope she'll see these posts and will answer some of our questions.

Perhaps there is more than one role for Daflon: 1) to help control bleeding via vasoconstriction, 2) to help inhibit leukocytes, 3) to decrease valvular remodeling, and 4) to help inhibit "capillaries from leaching their contents into our brains" via vasoconstriction (Jugular's last post).

I don't have enough knowledge to even guess. The other two drugs prescribed were an anticoagulant (dagibitran, which is Pradaxa) and an antiplatelet (aspirin). If Daflon was to help control bleeding through vasoconstriction, then you are suggesting it was meant to counter the risk of bleeding due to the Pradaxa? Are the two commonly prescribed together? Some of the IRs, including our own Dr. Sclafani, have moved to prescribing Pradaxa as the anticoagulant.

Has costumenastional weighed in on this yet? Here is an interesting post from him:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic13020-15.html#p126268
Chris was treated in Tokuda by dr Petrov one day after i was. I was prescribed a 3 month regime of Plavix (which ended the day before yesterday) and a 6 month regime of Daflon and baby aspirin.

It sounds like they were prescribing Daflon in Bulgaria when patients were ballooned only, with a different regimen for stents, back in April 2010.
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Re: This is facinating!!!!!

Postby HappyPoet » Sun Sep 11, 2011 6:42 pm

Cece, thank you very much for the costume link. :) I'm still waiting to hear back from him again.

From my inquiries, my understanding is that blood flow is not the only concern in the early weeks and months after angioplasty, at least for some doctors--also important is the healing of the injured vein wall that Daflon will help, and speed in this regard is considered crucial. So, this seems to be another area where doctors will not always be in agreement with each other.

Edit: Isn't it cool how patients (thanks Dania and everyone!) found this critically important area of differences between doctors? There is a vital role for Daflon in some doctors' protocols even though it's a vasoconstrictor which means that no one, no one who is not a doctor, can say that the compound, Daflon, should not be taken by CCSVI patients just because it's a vasoconstrictor... it should be taken in consultation with one's doctor.
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Re: This is facinating!!!!!

Postby NormB » Sun Sep 11, 2011 7:38 pm

Hi everyone,
Just a heads up in case anyone decides to order Daflon 500 from any online pharmacies in the US and Canada, there are many that offer this product at much inflated prices (I have seen $150.00 +), first of all the manufacturer Servier does'nt offer or have
applied in both countries to Fda and Health Ministry of Canada for distribution. I have spoken with a Servier manager. They sell it only in Europe and some parts of Asia.

I have a brother in law who lives in Switzerland and is a doctor as well and he will ship me by regular mail one container of 60 caps selling for $20.00 manufactured by Servier.
Thought it could help.
Wonder if it should be copied to other Daflon threads. In any case I will try it for 30 days and will report here.

Take Care All

NormB
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: This is facinating!!!!!

Postby HappyPoet » Mon Sep 12, 2011 4:16 am

Daniel, thank you very much for answering my question. I think I get it... so Google was able to see the study itself because the whole study was set up in the description portion that Google is allowed to see? In that case, I want to be a search engine! ;)

Cece, I heard back from costume and received his permission to relay the following:

"I took it for 6 months post op. It has something to do with protecting the veins from injury, recuperation after the procedure etc."

These uses of Daflon in CCSVI are the first indications I've found of Daflon's (relative?) vasoconstriction strength--the vasoconstriction property could be strong enough to produce a doctor's desired effect on an injured vein.

I doubt any American doctors are asking any of their patients to take Daflon because we haven't heard of Daflon being used here, but the idea of short-term use makes some sense if there's damage done to the vein during or after the procedure. With the 'right-sizing' of balloons that's possible with IVUS, hopefully the number of injured veins will decline.

Will still look more into Daflon and will post anything new I find.
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Re: This is facinating!!!!!

Postby dania » Mon Sep 12, 2011 11:03 am

Why Daflon could be more effective than flavanoids.
Read pages 213-216.

http://www.phlebolymphology.org/wp-cont ... logy43.pdf

Micronization offers improved efficacy in CVI
By acting at the heart of CVI, daflon 500 mg is effective at all
stages of disease. However, flavonoids have a poor gastrointestinal
absorption. This is overcome, in daflon 500 mg’s case,
by the process of micronization: a high-tech process which
reduces daflon 500 mg’s mean active particle size by 35 μm
with a subsequent faster and better absorption in humans with improved bioavailability. This has been conclusively
demonstrated in a single-center, randomized, double-blind,
crossover study in 12 healthy male volunteers. Immediately
from 24 hours postingestion, daflon 500 mg’s absorption
(measured by urinary radioactivity) is almost twice that of
simple diosmins (P<0.0001). This improved absorption of
daflon 500 mg over simple diosmins is maintained after 2
weeks of treatment (57.9% vs 32.7%; P<0.0004).7 Therefore,
evidence that, thanks to micronization, daflon 500 mg’s
absorption is almost doubled, leading to significantly
improved clinical efficacy.
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Re: This is facinating!!!!!

Postby NormB » Wed Sep 14, 2011 1:45 pm

Hi everyone,
Is Detralex 500 the same as Daflon 500?


Many thanks

NormB
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: This is facinating!!!!!

Postby dania » Wed Sep 14, 2011 1:56 pm

Yes It is made by the same company, Servier. Just distributed under different names.
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Re: This is facinating!!!!!

Postby NormB » Thu Sep 15, 2011 10:38 am

Thank you Dania,
Does this mean it could be distributed in Canada under the different name?
In any case I'm supposed to receive a bottle of Daflon from Switzerland next week.
$20.00 for 60 caps. If I don't see any change within the month then I'll cease
taking it.

Again many thanks

NormB
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: This is facinating!!!!!

Postby dania » Thu Sep 15, 2011 10:51 am

NormB, I have called 3 pharmacies and I was told no. Gave the name Daflon plus the active ingredients.
If you are getting Daflon made by Servier, 60 caps for $20 that is really inexpensive. I have been shopping around and the price I am getting ranges between $0.67 to $1.00/capsule. What site did you order them from?
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Re: This is facinating!!!!!

Postby NormB » Thu Sep 15, 2011 11:19 am

Hi Dana,
The Daflon I will receive is from Servier. It is my brother in law who lives in Switzerland and is also a doctor. He made enquiries on the product and told me it might look benificial for us and the product is safe as long it is taken by itself with no other medicine aka interfferon or other. If it is the case then a doctor should be consulted before. He is sending the bottle via regular mail so not to be intercepted.
He picked up the product from a pharmacy close to his residence in Lauzanne.
I read from a post (think from oneeye) that Tisabri performs very similar, that it prevents the leukocytes sticking to the vessel wall thereby reducing inflamation. Don't know the price of Tisabri but must be much more expensive.
So if anyone have relatives in Europe this is the cheapest way.

Take Care

NormB
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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