Daflon 500mg tracking thread

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

Re: Daflon 500mg tracking thread

Postby dav » Sat Sep 24, 2011 7:24 am

Hi

I have a question, do you think that taking Daflon while on Tysabri would be ok.

A bit of info:
I have been on Tysabri since Feb-2008 and have so far tolerated it well, I also work hard at keeping fit and I and am in good shape but as all ms suffers I am constantly looking for improvements and I am keen to try and explore potential treatments.

So do you see there being any issues ? Can and do flavonoides present any issues when on tysabri?

Regards
Dav
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Re: Daflon 500mg tracking thread

Postby HappyPoet » Sat Sep 24, 2011 8:12 am

Hi Rosegirl,

Having five blockages venoplastied with no improvements must have been disheartening, to say the least. Will you be continuing with follow-up ultrasounds to check for restenosis, and if restenosis is found, will you have venoplasty again to keep open your veins?

Perhaps your symptoms are not due to venous problems but are caused by arterial and/or nerve problems like those found in misalignment of the skull base and first vertebra, the Atlas (C1). When veins, arteries, and nerves are pinched or compressed as they leave the skull, havoc rules. Have you looked into UCC which is Upper Cervical Chiropractic (aka CCVBP)?

My Atlas Orthogonal chiropractic adjustment is the reason I can walk again--it took away 100% of the numbness in my feet. UCC also took away 75% of my debilitating MS Hug. I wish I had pursued UCC before CCSVI. I recommend UCC, but I do not recommend CCSVI anymore as a first treatment.

Getting repeat AO adjustments is MUCH easier, cheaper and faster than getting repeat venoplasties; plus, it's painless. Dr. Flanagan (uprightdoc) can help you find the right kind of chiro for your needs--see the thread CCSVI and CCVBP.

I had only two IJV blockages that needed venoplasty, and I did have some improvements; however, those improvements are starting to disappear at the six-month mark. Medicare now denies payment for CCSVI procedures for MS patients, and I won't and can't spend ten grand every six months for more venoplasties.

Congrats on your improvements with Daflon! So wonderful that you and Jugular felt improvements so quickly. Thanks for the tip about taking Daflon with food. I'm looking forward to reading your updates and everyone else's, too. Hopefully, I'll be able to report an improvement or two of my own.

~~~~~~~~~~

Hey David, cute guinea pig!

~~~~~~~~~~

Edit: Yikes!
I mistakenly, unintentionally, accidentally said, "... but I do not recommend CCSVI anymore."
I meant to say, "... but I do not recommend CCSVI anymore as a first treatment."
Last edited by HappyPoet on Mon Sep 26, 2011 7:09 am, edited 1 time in total.
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Re: Daflon 500mg tracking thread

Postby Jugular » Sat Sep 24, 2011 8:21 am

dav wrote:Hi

I have a question, do you think that taking Daflon while on Tysabri would be ok.

A bit of info:
I have been on Tysabri since Feb-2008 and have so far tolerated it well, I also work hard at keeping fit and I and am in good shape but as all ms suffers I am constantly looking for improvements and I am keen to try and explore potential treatments.

So do you see there being any issues ? Can and do flavonoides present any issues when on tysabri?

Regards
Dav
Dav as per my intro to this thread, I'm no expert, so grab a grain of salt here. Daflon 500mg doesn't seem to interact with anything. But Tysabri would scare me with anything especially a substance that might do some of the same things. I believe they don't want you taking interferons with it either. It sounds to me like you have a good thing going with what you have and there is no point adding something which may do what Tysabri is supposed to do. I think the stakes are to high for you to play with Daflon.
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Re: Daflon 500mg tracking thread

Postby Rosegirl » Sat Sep 24, 2011 10:31 am

HI, Happy poet,

Yes, it is disappointing that I didn’t get that miracle that we all pray for. My only problem is walking – those pesky heavy legs – and repeatedly over the years all the problems go away – for a few minutes. I swear, there’s a flap somewhere that they keep missing. It’s like a wire with a short in it – either I can walk perfectly or I can barely walk at all.

I am still considering a third procedure. After the first one at Georgetown U., the IR said that, if he didn’t find and fix it, no one else could either. Then others looked at the images and found that he missed the LIJV completely, but he did get the azygous open. In the second procedure, the IR opened five blockages (70- 95% in both IJVs, azygous, renal and iliac). After about four months, it’s finally a tiny bit easier to move, but nothing that’s actually something I can work with. Again, I’ve been told I’m a non-responder. But maybe “non-responder” is IR-speak for “I don’t know what else to do”, hence I’m keeping my options open.

As for follow up, neither IR has recommended anything. Since my feet had started going back to being purple fairly often, I suspect something has closed up again, but no one seems concerned about that and my condition really has never changed. But maybe that is a sign that retreatment is a valid option? The last IR said to wait six months and then have another conversation. That will give me a month on Daflon, so maybe the timing worked out right.

That on/off quality makes me think that UCC isn’t likely to be the answer for me, but if the Daflon doesn’t do the trick, I’ll give it a shot. It’s got to be less stressful and cheaper that another angioplasty.

I’ve only taken two Daflons, but each time, within an hour, it’s a lot easier to move. No enough to get by with just a cane (yet?), but I’ll give it a month and see what happens. Obviously, I also need to build up some muscle strength, so I’ll pretend to be patient for a while longer.
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Re: Daflon 500mg tracking thread

Postby dania » Sat Sep 24, 2011 10:40 am

Rosegirl, I have also noticed that there are times that my body functions better. Does not last long but I do feel it. It is as I have better blood flow, why, I have no idea. Once and only once my swelling in my foot almost disappeared for about a week. Go figure.
Just ordered Daflon. Hope it helps.
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Re: Daflon 500mg tracking thread

Postby munchkin » Sat Sep 24, 2011 3:12 pm

I have just ordered a 1 month supply and will update weekly once I have started taking it. The original venoplasty had amazing results, all my symptoms were gone. Unfortunately. the LIJV became completely occluded and the RIJV was 85% blocked with scar tissue. All symptoms have returned with a few extra. The second procedure hasn't resulted in any improvements and I'm waiting on a ultrasound to determine if the RIJV has stayed open.

If this drug can offer any kind of improvement I will become a regular customer.
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Re: Daflon 500mg tracking thread

Postby Rosegirl » Sat Sep 24, 2011 4:24 pm

Munchkin,
How long was it between your procedures? Did you have any tests to measure blood flow before the second procedure? Or was it just obvious that you needed another?
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Re: Daflon 500mg tracking thread

Postby HappyPoet » Sat Sep 24, 2011 5:40 pm

Everyone, please read the last two posts on the thread This is fascinating which discuss the supplement Pycnogenol which is another fascinating compound, this one without vasoconstriction effects.

Keep in mind that the vasoconstriction effects of Daflon might have a short-term role after venoplasty to help stop/slow clotting. Also, Daflon may have important properties helpful to pwMS/CCSVI (that haven't been elucidated yet) which Pycnogenol lacks. Lots of questions!
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Re: Daflon 500mg tracking thread

Postby munchkin » Sat Sep 24, 2011 6:06 pm

I had my first procedure on March 2nd, the second procedure was August 6th. After the first one, because I was experiencing some return of symptoms, I went for a one month follow-up u/s which determined that the lijv was 90% closed and then a three month follow-up showed the rijv was at least 75% blocked and the lijv was now completely blocked. These were verified by ivus and u/s in August. The ivus showed the rijv to be 85% blocked by scar tissue and there was some valve issues left.

Rosegirl, how are you doing? This is one of the most frustrating times of my life. A part of me knows this is the answer but my only option now is a stent. In all of my years with MS I have never felt cured beyond a couple of days. Placebo or whatever. I had a month of feeling normaal, my body worked the way it's supposed to. Now it doesn't.

HappyPoet, I read some reviews on Pychogenol and it seemed that they were mostly talking about cognitive issues, I will have to read more.
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Re: Daflon 500mg tracking thread

Postby Jugular » Sun Sep 25, 2011 10:43 am

HappyPoet wrote:Everyone, please read the last two posts on the thread This is fascinating which discuss the supplement Pycnogenol which is another fascinating compound, this one without vasoconstriction effects.

Keep in mind that the vasoconstriction effects of Daflon might have a short-term role after venoplasty to help stop/slow clotting. Also, Daflon may have important properties helpful to pwMS/CCSVI (that haven't been elucidated yet) which Pycnogenol lacks. Lots of questions!

That is fascinating. Pycnogenol is made from bark from a species of pine tree found on the coast of France. I'm not finding the same sort of promising information about it regarding valve remodeling and Tysabri-like protection that I've seen with Daflon 500mg. It seems to me to be targeting edema associated with varicose veins. Then again, the company that's behind Pycnogenol, Natural Health Science Inc., does not seem to be as big of a pharma player as Servier, so maybe can't afford to plunge as deep into the research waters.

For now I'm going to keep playing the winning hand, but I'm keeping an eye on Pycnogenol.

The idea that there might be a pharmacological treatment for CCSVI is all so very exciting to me. So far IR's have lead the charge and so the focus has been on surgical intervention. For all the big pharma bashing that we like to do around here, keep in mind that 'Pharma' been fed misinformation from neurologists about the nature of MS and therefore their solutions have perhaps been for the wrong question. Put another way, with the possibilities that Daflon and Pycnogenol hold, perhaps they've been barking up the wrong tree.
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Re: Daflon 500mg tracking thread

Postby Robnl » Mon Sep 26, 2011 4:23 am

Venoruton vs Daflon
http://ang.sagepub.com/content/57/2/131.short

I used Venoruton for 2 weeks, totally no effect.....but the link shows that it should be more effective than daflon...
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Re: Daflon 500mg tracking thread

Postby Rosegirl » Mon Sep 26, 2011 5:37 am

Munchkin,

For a while I was desperate to be treated again, but I'm content to give Daflon a month and see what happens. My GP seems to think it can't do any harm and since he's quite into all forms of alternatives, I'm happy to give it a try for a month. So far, I've only had 3 pills, but within an hour, I move a little better. It's worth a test, especially since no one is begging me to have a third procedure.

Also, I think that the IRs will have lots of new information available in the spring when they have their annual conferences. Assuming nothing catastrophic happens, I can afford to wait.

One last thing -
The range of MS symptoms,. how long they last and how severe they are varies so much that I think the IRs are just at the very beginning of unraveling the mystery. Some people have stenoses, others have veins blocked by pressure from another body part. They are still figuring out how to best treat valves. And of course, they're still deciding how many places to look in the first place.

We still don't know how many people have been treated and what their short term outcome has been, and we barely have any data over two years.

I am very hopeful that CCSVI will mature into a valuable method of diagnosis and treatment. Those who need help immediately should be able to be treated. And maybe those of us who are impaired but stable should give the IRs a little more time.
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Re: Daflon 500mg tracking thread

Postby 1eye » Mon Sep 26, 2011 7:38 am

Another supplement which (correct if wrong) is made from tree bark is Ginkgo Biloba. This one got mentioned by Dr. Zivadinov in Brooklyn. I wonder if I could get a sponsorship contract... :smile:
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Daflon 500mg tracking thread

Postby HappyPoet » Mon Sep 26, 2011 7:54 am

Hi Rosegirl,

When was your second procedure? USs are usually recommended every three months for the first year. You don't need an IR to write the script--your primary can write it: "US internal jugular veins, bilateral." Then just make an appointment at a facility your primary recommends or one you like. This US does NOT need to be a Zamboni-style US; this US is just checking for occlusions, blockages, etc. to flow.

If you have an US, which I highly suggest you do have, be sure to ask the US tech how strong of a flow you have in each IJV (some techs will answer, some won't). As you may already know, the Azygos vein cannot be checked by US because of interference from the spinal column and heart.

Having the info from the US will help guide your decision making. For instance, let's say your IJVs have restenosed 80% (or more) in just a couple months--you might be more inclined to have a repeat venogram/venoplasty sooner rather than later. If your IJVs have restenosed only 20% in six months, then you would have more time in which to make your decision.

I would think for those with insurance, keeping the jugular veins and the Azygos vein open and flowing is a smart choice--if I may paraphrase you, Rosegirl, the future is coming with all sorts of advancements. One such advancement is already here--IVUS. I strongly recommend that your next procedure, if you have one, should be with a doctor WHO IS ALREADY EXPERIENCED using IVUS. The only experienced IRs that I'm aware of is Dr. Sclafani in Brooklyn or Dr. Cumming in MN.
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Re: Daflon 500mg tracking thread

Postby HappyPoet » Mon Sep 26, 2011 8:38 am

Robnl wrote:Venoruton vs Daflon
http://ang.sagepub.com/content/57/2/131.short

I used Venoruton for 2 weeks, totally no effect.....but the link shows that it should be more effective than daflon...

Robnl, thank you for sharing the link on Venoruton. The world of supplements is amazing. I think it's good to see Daflon being compared to other compounds, but I would like to see if those other compounds have been shown to have the effects that Daflon has been shown to have on valvular remodeling and reducing leukocytes and adhesion molecules.

Thank you also for sharing your experience with Venoruton. Perhaps you might give Daflon a try to see if you feel any effects quickly like Jugular and Rosegirl felt. I'm still waiting for my Daflon to arrive. If it doesn't help, I'll try other supplements--it's my only choice left since I can't afford $10,000 for what would be my third procedure (Medicare has stopped paying for CCSVI procedures for MS patients). I must find another way to help stop/slow my IJVs from closing, and so far, Daflon is the only supplement shown to affect veins.

I wish us all luck!
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