Surprised by diagnosis, no symptoms, is Tysabri right for me

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Surprised by diagnosis, no symptoms, is Tysabri right for me

Postby MomOf4Kids2Dogs » Thu Nov 20, 2014 7:14 am

Hi friends, over the past 3 weeks, after an unexpected MRI result for a different issue showed lesions on C4 and my brain and my spinal fluid was positive, I was diagnosed with MS. I have no symptoms other than GI issues a year ago that were fairly serious and led to a temporary colostomy. But I am not aware of neurological symptoms. I am 48, active, my kids are ages 9-15. My doctor is saying maybe we caught the MS early and we should go after it aggressively to make sure I stay well since I am at an age that is higher risk for progressive disease. I am usually more of an acupuncture/meditation kind of girl but I don't want to be irresponsible and ignore advances in Western medicine since I have a family to consider. Has anyone started Tysabri without having symptoms, does anyone have any advice for me about drugs to take or not take? I just got the welcome call from the TOUCH program and of course it does mess with my head that the risk of death, 1 in 1,000, is about the same risk I had of getting an MS diagnosis. Or is that death risk skewed? I can understand taking the chance with symptoms to fight, but has anyone taken Tysabri on faith without symptoms. Thanks for your advice. Warning, this is all new to me and I might need help understanding some acronyms, etc. -- I have been googling now for a couple weeks but there's a lot to learn.
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby NHE » Thu Nov 20, 2014 3:19 pm

Tysabri wouldn't be my first choice. In addition to the risk of death, the risk of disability from PML is particularly high. Tysabri is looking less and less like a long-term solution.

tysabri-antegren-or-natalizumab-f11/topic24476.html#p223183
"Right now, the risk of PML in patients treated with [Tysabri] for more than two years is about one in 75 patients. That's a very high risk," said study author Eugene Major, a senior investigator at the U.S. National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Md.


In addition, in the following study, folks on Tysabri that got PML had roughly an 87% chance of becoming moderately to severely disabled from the PML.

RuSmolikova wrote:Among 38 patients with Karnofsky performance ratings by their physicians at least six months after PML diagnosis, only five were in the "mild" disability category. Half were rated as moderately impaired, and 37% were severely disabled and required custodial care.
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby MomOf4Kids2Dogs » Thu Nov 20, 2014 4:10 pm

Wow NHE, the 1 in 75 statistic is certainly making me pause right now. It's hard to accept that when you feel fine. I thought I could try this medication but I felt panic when the infusion center called today and feel even more reading this.
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby cheerleader » Thu Nov 20, 2014 6:20 pm

Please look into the first line treatments, like Copaxone. Especially since you are doing well.
Here's what I put together for my husband, when his neuro started pushing Tysabri, even though he was doing well. He never took it. And is still doing well, almost 8 years later.
Follow your gut.

https://www.facebook.com/notes/ccsvi-in ... 1616067211

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby MomOf4Kids2Dogs » Sat Nov 22, 2014 10:40 am

Thanks cheer, others had been suggesting that I read your research and I had been looking for it. I have been talking with my husband and kids about not taking Tysabri and it is a relief that they said I wouldn't be letting them down by considering other alternatives, even though my neurologist has warned that I may not have the cognitive ability to understand the argument for drug treatments if I delay starting Tysabri. It's just hard to think about trying something with that level of risk and downtime from side effects when I feel just fine. Very grateful to have your notes to help me.
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby MomOf4Kids2Dogs » Sat Nov 22, 2014 11:07 am

Follow on question -- they gave me 5 days of Solumedrol (1000 mg infused per day) and that plus the spinal tap and blood patch to fix the leak of spinal fluid have me feeling pretty wretched. I probably should have asked questions before accepting the steroids but I was scared about the idea of losing cognitive ability. Does anyone have an opinion on declining the steroids or even the diagnostic stuff (I got sick from the MRI contrast injection)? Is there any reason I can't just go along my merry way until something actually feels wrong? Or would it be foolish not to at least try steroids, or even Copaxone?
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby cheerleader » Sat Nov 22, 2014 3:15 pm

I cannot believe your neuro actually said that to you about losing your cognitive ability if you don't take Tysabri....unbelievable!! Would it be possible to find a new neuro who might support you in your search for better health? There are good doctors out there. Might be worth it to look.

As far as IV steroids---you should be fine. They are helpful in the midst of a flare, and relieve inflammation. You've already had the 5 days of solumedrol, right? Did you do a taper? You should do that. They are oral pills, you take until you get back to baseline. Not a good idea to just stop steroids cold turkey. You'll feel better once you're done.

Take some time, do your research. Look into Dr. Wahls and Dr. Jelinek's diets...everyone is different, and some programs work better for others. Keep moving, keep learning. There was some exciting research from the Karolinska Institute just the other day about how an active, learning mind remyelinates.
http://ccsviinms.blogspot.com/2014/11/h ... n-new.html

Don't feel pressured to do anything until you understand how your body is responding.
Hang in there!!!
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby NHE » Sat Nov 22, 2014 10:06 pm

cheerleader wrote:
MomOf4Kids2Dogs wrote:even though my neurologist has warned that I may not have the cognitive ability to understand the argument for drug treatments if I delay starting Tysabri

I cannot believe your neuro actually said that to you about losing your cognitive ability if you don't take Tysabri....unbelievable!! Would it be possible to find a new neuro who might support you in your search for better health? There are good doctors out there. Might be worth it to look.

That sounds pretty arrogant. Ask him how much of a kick-back he get's from Biogen for prescribing Tysabri. Ask him about the risk of immune reconstitution inflammatory syndrome (IRIS) which can cause fulminate MS leading to death after stopping Tysabri. tysabri-antegren-or-natalizumab-f11/topic21087.html#p200117 Ask him if an absolute risk reduction in disability progression of only 12% is worth taking to risk having a brain that looks like this... tysabri-antegren-or-natalizumab-f11/topic22315.html#p213915 Ask him if all of this is really worth $250,000 per year. daily-life-f35/topic21322.html#p201655
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby NHE » Sun Nov 23, 2014 1:58 am

Just for fun, you can search Propublica's "Dollars for Docs" database to see if your doctor is listed and who's paying him.

http://projects.propublica.org/docdollars/
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby Youarethecure » Sat Nov 29, 2014 10:14 am

NHE wrote:
cheerleader wrote:
MomOf4Kids2Dogs wrote:even though my neurologist has warned that I may not have the cognitive ability to understand the argument for drug treatments if I delay starting Tysabri

I cannot believe your neuro actually said that to you about losing your cognitive ability if you don't take Tysabri....unbelievable!! Would it be possible to find a new neuro who might support you in your search for better health? There are good doctors out there. Might be worth it to look.

That sounds pretty arrogant. Ask him how much of a kick-back he get's from Biogen for prescribing Tysabri. Ask him about the risk of immune reconstitution inflammatory syndrome (IRIS) which can cause fulminate MS leading to death after stopping Tysabri. tysabri-antegren-or-natalizumab-f11/topic21087.html#p200117 Ask him if an absolute risk reduction in disability progression of only 12% is worth taking to risk having a brain that looks like this... tysabri-antegren-or-natalizumab-f11/topic22315.html#p213915 Ask him if all of this is really worth $250,000 per year. daily-life-f35/topic21322.html#p201655


B I N G O

I don't see how one goes straight to the most aggressive drug on the market.

I mean lets be real, what happens when down the road when it could get bad and you NEED tysabri? Yet you have had too many already and are JVC positive.

I don't like your neuro. To say what he said to you is unbelievable. It truly sounds like he gets a kick back from prescribing the drug.

You seem to be doing fantastic so going to the most aggressive drug is honestly just kind of stupid.

Look into other treatment options and a new neuro. Copaxone is simply a synthetic strain of protein that seems to stop the body from attacking itself. Minimal side effects as well. I take copaxone. I started early this year and have had 0 problems from it.
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Re: Surprised by diagnosis, no symptoms, is Tysabri right fo

Postby vesta » Sat Nov 29, 2014 11:47 am

In my opinion, it would be insane to launch into major drug therapy when you aren't even sick. Below are my steps to MS health, which just means being healthy.

THE FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet. https://www.youtube.com/watch?v=kgcGlei_JLo
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)
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