So... It's official. Time to move forward

New members should feel free to introduce themselves here

So... It's official. Time to move forward

Postby luckyme » Thu Oct 27, 2016 4:27 am

Went to see the neuro doc yesterday. So it's official. They want to treat me with trecfidera. They wanted to immediately order Iv steroids for 3 to 5 days but I refused. I believe I'm on the rebound from my flare up. My symptoms are a lot better than what they were so I'm just gonna wait it out. So now the game begins. The dx is no surprise to me. I was pretty sure for a while now. I'm just glad that they were sure enough to not require a spinal stick!!! That does not sound like fun!! Still not sure on the tecfidera although when I researched the drugs that were available to me that one stood out as my choice of all of them. I'm glad the neuro thought the same. I'm just not sure cause I am jcv positive. They weren't real concerned because she told me that there has only been 4 cases of PML out of approximately 450,000. That's pretty rare! She also told me that the efficacy is around 50% for trec which is better than the injectables which stands at about 40%. Besides that, who the hell wants to stick themselves over takin a pill? NOT THIS GUY!!! Anyway, I was just wondering if the stuff she was tellin me was true about it or was she blowin smoke to get me on it? I asked her for some info on it. Here's the funny part.... She told me she had a book on it for me. So I'm expecting some good info. She hands it to me and it's like a children's book!!! Lots of happy pictures and and big bold text all sugar coated like it was all lollie pops and candycanes! It's a joke. No real numbers or useful info whatsoever. It reads exactly like the annoying relentless drug commercials that you see on tv nonstop. In fact... I haven't seen one on tv yet for trec but I'm pretty sure I could follow along with my book word for word if it did come on!! These F'in drug companies are somethin! I should have asked her to invite me to the next drug rep lunch! So once again I rely on the wonderful people on this site because you guys/ladies are always truthful, knowledgable, and very helpful. Right, wrong or indifferent, I appreciate all of you and hopefully I may return the favor one day.
luckyme
Family Member
 
Posts: 28
Joined: Thu Oct 13, 2016 8:14 am

Advertisement

Re: So... It's official. Time to move forward

Postby ElliotB » Thu Oct 27, 2016 5:36 am

You bring up many, many valid points and concerns. Without getting into all of them at this time (as I don't know if you want 'sugar coated' responses), I will bring up probably the most important one - PML. PML is an incurable brain disease that will likely kill you if you get it.

Here is some info on PML:

http://www.ninds.nih.gov/disorders/pml/pml.htm


Here is some on the JC virus:

http://www.healthline.com/health/multip ... patients#1


Here is some info on Tecfidera and PML:

http://www.medscape.com/viewarticle/856148


There is a lot of info on PML here on this site and on the web. I suggest you spend some time doing a reasonable amount of research.I also suggest you look up the M&M analogy that is floating around on the web if you are not already familiar with it. FWIW by the numbers, you should not even have MS! There are over 7 billion people on our planet and only about 2 1/2 million cases of MS. So the odds of getting MS are quite small. The numbers for other illnesses like Cancer, Alzheimers and Diabetes by comparison are not as favorable, not even close. Not that it is good to be sick with anything but...

The bottom line is that since you have the JC virus, you may want to consider another treatment option, even if needles are involved. And IMHO, your doctor is not giving you the best advise, sorry (but this is only my opinion and I am sure you will find many that like you, think otherwise).

Keep in mind that DMDs do not alter the path/progression of MS, they only possibly reduce the number of relapses, which, if they work, is a good things. I am on a DMD (the daily injection type) and have been for 3 1/2 years. I can't tell you for sure whether it works or not. I hope it does. But the fact is that nobody knows for sure if ANY of the DMDs work.

Many of us here feel there are ways to improve our chances of a better outcome over the long term through diet, supplements, exercise, lifestyle changes to eliminate all stresses from your day-to-day life, and improved sleep patterns, to name a few. There is a wealth of knowledge on this site and on the web. Do as much reading as you can and be as pro-active as you can.

Wishing your good health!
ElliotB
Family Elder
 
Posts: 1282
Joined: Mon Feb 03, 2014 4:08 pm

Re: So... It's official. Time to move forward

Postby vesta » Thu Oct 27, 2016 9:53 am

Scientific Research doesn’t support the efficacy of Disease Modifying Drugs so why take the risk ? The following quote comes from my site MS Cure Enigmas www.mscureenigmas.net/ You can check out Joan Beal’s site The Vascular Connection (she writes as cheerleader here.) She has overseen her husband’s healing. Besides venoplasty, diet, supplements, UV rays (sun) he does use Copaxone. Or check out Matt Embry’s MSHope http://www.mshope.com
The following refers to Dr. George Ebers research.

QUOTE. On March 21, 2013 it was announced that he had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis. This freed him to give a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency. www.youtube.com/watch?v=OqY-_K1fYJY

(see blog entry for May 23, 2014 Vitamin D, Veins and Epstein Barr Virus)

His heresy was thus twofold.
1. The study of 1,000 patients over a 30 year period revealed that relapses are unrelated to long term outcome.
2. His 25 year study of Disease Modifying Drugs revealed they don’t stop descent into disability.
With this information in hand, one would be well advised to study one’s own personal situation. Is the primary problem a skeletal obstruction of cerebrospinal fluid circulation? Do major vein stenoses cause back jets (refluxes) into the Central Nervous system? Are the veins open to blood circulation yet collapse under body stress? Are their additional pathologies which hamper venous blood circulation? Remember, DMD’s are intended to prevent relapses but they don’t nourish the grey matter of the brain. In fact, the inflammation may be an immune system response which HEALS. When inflammation/relapses cease the brain atrophies leading to severe disability. One might be well advised to seek alternatives to current DMD treatment and/or complement the treatment to optimize a healthy brain and central nervous system. This means enhancing blood flow, enhancing free flow of cerebrospinal fluids, optimal nutrition and supplements, and getting 15 minutes of UV rays a day. (See Five Steps to Multiple Sclerosis Health under Cure or Control) END QUOTE

I agree with ElliotB. (I spoke recently with a Canadian journalist who had spoken with Dr. Ebers mentioned above and he was totally shocked that the Neurology community ignored the research. Also, they defunded the research center.)

Best regards, Vesta
vesta
Family Elder
 
Posts: 535
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France

Re: So... It's official. Time to move forward

Postby NHE » Thu Oct 27, 2016 10:56 pm

luckyme wrote:She told me she had a book on it for me. So I'm expecting some good info. She hands it to me and it's like a children's book!!! Lots of happy pictures and and big bold text all sugar coated like it was all lollie pops and candycanes! It's a joke. No real numbers or useful info whatsoever. It reads exactly like the annoying relentless drug commercials that you see on tv nonstop.

Try the full Prescribing Information instead.

http://www.tecfidera.com/pdfs/full-prescribing-info.pdf

If there are terms you need to look up, then you can use a medical dictionary. Here's a free one (though if you want a printed copy, the you can get one at a used book store, Stedman's is a good one to use).

http://medical-dictionary.thefreedictionary.com/
User avatar
NHE
Volunteer Moderator
 
Posts: 4609
Joined: Sat Nov 20, 2004 3:00 pm

Re: So... It's official. Time to move forward

Postby Scott1 » Fri Oct 28, 2016 2:30 am

Hi,

I'm so far removed from the DMD mantra these days so it is wrong for me to comment. However, from Elliots link it says this about PML-

"In general, PML has a mortality rate of 30-50 percent in the first few months following diagnosis but depends on the severity of the underlying disease and treatment received. Those who survive PML can be left with severe neurological disabilities."

It's chief characteristic is it destroys the cells that help make myelin. (https://rarediseases.org/rare-diseases/ ... halopathy/ ).

So while they wait to decide if your worsening symptoms are due to the MS not responding to the medication, or not, and they tell you to wait for an appointment to do some scans and a few tests to see if they should make a change, you can ponder if Tecfidera was the right choice when you know you have JCV.

Don't forget, all those medical advisors have lives, families, stresses and many other distractions that go with their job. That's all you are to them, another job. If you think the advisors you have today will be there by your side in a few years time then that is an heroic assumption.

The point is really that its your life and your responsibility. The person who told you to buy something is rarely there to tell you to sell it. You need to own this and not just rely on the assurances of someone who doesn't have to face the issues you may.

You know you have JCV. You know Tecfidera is associated with PML. Defaulting to unprovable assurances that you will be unaffected is not taking ownership.

I have managed my diagnosed MS very well for 23 years by always owning it. I would not make the decision you plan because a) there is no explanation of why Tecfidera is the primary choice and b) there is no explanation of why you wont get PML in the circumstances.

I took Avonex for 10 years when you still needed to mix the powder with sterile water. The needle was big, not like today. I hated the needle and I hated Avonex but I took it because I had tried to understand how it may work and felt it wouldn't make my disease worse. In the end I decided I didn't want it any more. Injections are not a deal breaker. You have a confirmed diagnosis now so your choices need to be real because you own them.

The truth is the best medicine is knowledge. I would agree with your desire to wait and take the time to read widely and critically. Medical opinions on MS move over time, but only slowly. Tecfidera is popular now and Avonex is no longer the gold standard it once was.

If you want help with other ideas while you ponder your decision then there are plenty of ideas and opinions here and ideas are more accessible now than when I was diagnosed.

Good luck with the decision you make but make it a good one.

Regards,
User avatar
Scott1
Family Elder
 
Posts: 1324
Joined: Wed Oct 22, 2008 2:00 pm


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service