CCSVI or Tysabri??

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

Do Not Change

Postby MarkW » Sat Mar 19, 2011 9:49 am

This is not a difficult decision - change nothing. When you are certain that you do not have any stenoses or valve problem (using complete intravenous ultrasound investigation by an expert) then start thinking about increasing your Tysabri dosage interval. Do not stop Tysabri abruptly the rebound is significant.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Do Not Change

Postby soapdiva884 » Sat Mar 19, 2011 12:29 pm

MarkW wrote:This is not a difficult decision - change nothing. When you are certain that you do not have any stenoses or valve problem (using complete intravenous ultrasound investigation by an expert) then start thinking about increasing your Tysabri dosage interval. Do not stop Tysabri abruptly the rebound is significant.

MarkW


You can NOT do this without a Physicians plan of action and approval. Do not increase your Tysabri dosage interval on your own please! And this is a VERY difficult decision for people to make!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Do Not Change

Postby MarkW » Sat Mar 19, 2011 4:24 pm

I said 'start thinking about increasing your Tysabri dosage interval', after a full IVUS check. Starting to think comes a long way before doing anything.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Kara1234 » Sun Mar 20, 2011 6:29 am

I have had 55 infussions of tysabri and I have had CCSVI twice. I have noticed much more stability in the last 4 years on tysabri than a change with CCSVI.
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Postby MaggieMae » Sun Mar 20, 2011 9:38 am

My husband has been on Tysabri for over three years. At our last visit with his neurologist, the neurologist talked about PML and all that goes with it. I asked if it would help to have his infusion every six or eight weeks instead of every four. Neurologist said chances of PML would remain the same.
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Immune Supression Leading to PML

Postby MarkW » Sun Mar 20, 2011 9:56 am

I would question your neuro MaggieMae. Does s/he have any data to support this assertion ??? The manufacturers published data says the more infusions of Tysabri a pwMS has, the greater the chances of developing PML.
Increasing the time period between infusions after 15-20 MAY reduce th chances of developing PML, as the person is receiving less total immune supression in total. An educated thought thats all.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Sun Mar 20, 2011 11:39 am

Kara1234 wrote:I have had 55 infussions of tysabri and I have had CCSVI twice. I have noticed much more stability in the last 4 years on tysabri than a change with CCSVI.

Kara, thanks for sharing that.
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Re: Do Not Change

Postby bunny82 » Mon Mar 21, 2011 6:28 am

MarkW wrote:I said 'start thinking about increasing your Tysabri dosage interval', after a full IVUS check. Starting to think comes a long way before doing anything.

MarkW


Many thanks for your educated thought Mark, this is such a great idea, certainly food for thought... I will check with my neuro when I see him. Can I please ask when you say 'a full IVUS' it's not a typo, you do mean the IVUS, not just a Doppler? The Doppler would be so much easier and cheaper but having an IVUS would be equivalent to having a venogram again, wouldn't it?
Oh, and I meant to say so many times (but never actually said it, I think): I really appreciate all your insights and am really glad we have a qualified pharmacist among us! I'm following your advice as per vit. D as well...

Kara, thank you so much for sharing that info with us. If you don't mind me asking: if you had those two procedures during your time on Tysabri how do you know that it was Tysabri that helped you more, and not procedures? I know it's your body so if you say just gut-feeling then that makes sense, too. But if there was something more specific, would you mind sharing that, too? I really would like to understand your point of view as hopefully soon I will be in the same boat... :D
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HHi,

Postby Badger » Tue Mar 22, 2011 1:15 am

I was on Tysabri until this time last year and I stopped because I went over to Poland for CCSVI procedure.

I was great for 3 months then I got worse pretty quickly and I went back on Tysabri. I am still not back to the way that I was but I have improved and hope to get better.

So I would suggest sticking to Tysabri. :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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IVUS - IntraVenous UltraSound

Postby MarkW » Tue Mar 22, 2011 4:34 am

I did mean IVUS - IntraVenous UltraSound - Bunny82. To explain my understanding of the advantages of IVUS over Doppler or a catheter venogram. Both IVUS and catheter venogram can show pictures of the veins in the trunk (azygos etc) which are not shown by doppler as bones get in the way.
Both IVUS and catheter venogram are invasive but IVUS does not involve radiation (X-rays) or contrast medium but it is more expensive. It seems that IVUS gives more accurate pictures of valves but you should ask an expert not me. I had a catheter venogram and many X-rays in June 2010. However I am a 51 yo male, wishing not to start a family. Advice on X-rays could be different if you are thinking of a family later.

My guess is that IVUS will be come the gold standard for diagnosis of CCSVI in the future. We all know, gold is not cheap.

Thanks for your comments on Vit D, Bunny82. I am interested to hear of pwMS's vitD levels after some months on 5-10,000 iu/day. It is a very cheap supplement and it is my first suggestion for pwMS.

Sticking with your immune regulator and venoplasty for CCSVI is what Prof Zamboni recommends, Badger. So you and I are in good company, when we say this.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby MegansMom » Wed Mar 23, 2011 5:46 am

I hope this is still considered appropriate for this thread.
Yesterday I accompanied my daughter to her neuro appointment.

They asked my daughter if she would consider a blood test for research.
The maker of Tysabri is sponsoring the test. It's a test for the antigen that would be positive if you have ever had the CD virus ( I hope I got that correct) the said that they are trying to screen people for this. They said that the people who test positive have a specific gene that makes them more susceptible to get PML while on Tysabri.

Since she had to have other blood work she said OK . Honestly I would never let her take that drug , just too many risks of severe side effects and not enough of value. That's just my opinion.

(In fact I think that post venoplasty immune boosters maybe indicated not immune suppressive or modulators but that's my own theory. I think you may need a full WBC complement to clean up and repair damage.)

So if you have not had the test sponsored by the Tysabri maker to screen for people at high risk for PML perhaps you should call your Dr or the Pharma company. It was a free test.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Response regarding Vitamin D

Postby carollevin » Sun Apr 24, 2011 6:57 pm

Mark,
You asked people's experience about Vitamin D. I have worked with my doctor through blood testing to get my Vitamin D levels in a good range. I live in a warm-weather state in the U.S. so at first I sat in the sun every day for 30 minutes a day. After months of this my D3 level as measured by blood was only about 28 (I believe it was nl/mg) and I do recall the reference range from the lab was 30 - 100. So I started taking Vitamin D3 in supplement form and had to go all the way to 10,000iu per day to get my D3 level to 57 (again in this lab the reference range is 30 - 100). This has been the case now for at least 2 years that I have been taking 10,000iu per day and I get my D measured by blood several times a year and it always comes out in the mid 50s. I suppose if I wanted to get it more in the 75 range, which some say is more ideal for PWMS, I would probably need to take 15,000iu....As to why I wasn't absorbing D from the sun, my doctor said he has seen that with others and he doesn't know why some people just don't absorb D well from the sun. Plus I was starting to get a lot of signs of aging from all the sun bathing, so anyway for now I'll just continue with the 10,000iu, which I do take along with an Omega 3 and a cal/mag, as recommended by Ashton Embry. I can't say it's really helped the MS. I don't know. I have had PPMS for 5 years, no remissions, but progression has been very slow.
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Vitamin D levels

Postby MarkW » Wed May 04, 2011 2:21 pm

Nearly mislaid this question completely Carollevin. To get lots of info on Vit D3 go to:
http://www.thisisms.com/ftopic-14805-da ... asc-0.html
Take note of Jimmylegs posts on Zinc, Magnesium etc and have them checked.

The thread will give you the usual ranges of D3 and lots of reference material. I aim for 150-200 mmol/L of D3. I am not sure which form of vit D your tests refers to, also the units are different. Once upon a time I could convert the forms of D3 and units but that was over 25 years ago. Lets make sure we have the same D3 and units.

MarkW

PS Please the vit D thread in the future, as it will be easier for others to follow,
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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