Considering Tysabri - questions...

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

Considering Tysabri - questions...

Postby kw202 » Tue Jan 12, 2016 11:50 am

Hello,

I won't repeat a lot of my story, which you can read in all of its turn-of-the-screw (updated! new!) glory here: introductions-f20/topic27058.html

I got some labs back today. I am JCV negative, which is a relief since I'm consideing Tysabri. I haven't seen the actual result to see where I am on the scale yet, but apparently it's below the marker.

I have some questions and would appreciate any an all tips or pointers.

My MS specialist has recommended that I go on Tysabri right out of the gate. I'm not really sure why - I didn't think to ask at our visit - she spent a lot of time highlighting its efficacy, and also said she does not prescribe injectables because they're no more effective than pills. She did warn me about PML risks and ordered a JCV ratio test. At the time we were unsure about my JCV status and she was recommending Gilenya as a second choice depending on how I felt and what my JCV risk came back at.

So now that I've come back JCV negative, I have an (admittedly easier) decision to make and I am pretty sure that she will be recommending I go with Tysabri.

First, are there any statistics about how long people are recommended to (or typically stay on) Tysabri if they are JC negative? I've seen the PML risk factors laid out for 1-2+ years on Tysabri and how it changes geometrically over time if you are JCV+, but I haven't seen such a thing for JCV-. I realize, of course, that my JCV-/+ status could change and that will still require monitoring.

Second, I've seen some suggestions that Tysabri is a pretty high-powered drug that most people seem to be put on after failing other therapies. I didn't think to ask this at the visit because there was just so much information coming at me, but what would the purpose be for recommending such a drug the first time out? Aggressiveness? Lesion load? Any thoughts welcome. (I suspect lesion load will be it in my case, even though prior to this incident I've had no real reason to believe anything was wrong with me).

Third, I do have insurance, but I'm curious about out-of-pocket costs. I realize these can vary across the board, but I'm trying to prepare myself for how this could impact my wallet. What are peoples' typical out of pocket costs with private employer-based insurance, to the extent that can be generalized?

Fourth, is there any hard data to suggest that coming off Tysabri itself can trigger serious relapses? I've seen some scare stories, but I'm not sure what to think.

Last, has anyone JCV- gotten PML while on Tysabri?

I'm sure I'll have other questions, but that's it for now. Thanks for reading.
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm

Advertisement

Re: Considering Tysabri - questions...

Postby NHE » Tue Jan 12, 2016 5:37 pm

I have some notes on the costs of MS meds, including Tysabri, but I haven't updated it in a few years. If you let me know your info, I can add it to the table.

daily-life-f35/topic21322.html#p201655
User avatar
NHE
Volunteer Moderator
 
Posts: 4274
Joined: Sat Nov 20, 2004 3:00 pm

Re: Considering Tysabri - questions...

Postby cheerleader » Wed Jan 13, 2016 6:41 pm

Hi kw202--
I wrote this up for my husband when his neuro suggested he try Tysabri.
Her rationale was that he was a man, he had RRMS, and was bound to progress.
After reading this info and discussing it with her, he decided not to try Tysabri and is still doing well, now 9 years past diagnosis with no MS progression.
I'd suggest reading it thru. It is long, but it has links to research.
May give you some more things to discuss w/your own neuro.
Let me know if you have any questions after reading it.
https://www.facebook.com/notes/ccsvi-in ... 616067211/
all best to you!
cheer.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5352
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Re: Considering Tysabri - questions...

Postby StaryNight » Thu Jan 14, 2016 9:08 pm

I did well on it except for some HTN ( Hypertension) but I was taken off this drug due to testing postive for the JV Virus.
I liked being on a once a month treatment. At the time my insurance was great and everything was covered. Was very upset when they took me off it.
StaryNight
Getting to Know You...
 
Posts: 18
Joined: Tue Dec 08, 2015 6:54 pm

Re: Considering Tysabri - questions...

Postby kw202 » Fri Jan 22, 2016 11:06 am

Well, thank you all for your answers.

I've decided to go with Tysabri.

Best to you all.
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm

Re: Considering Tysabri - questions...

Postby NHE » Fri Jan 29, 2016 4:33 am

kw202 wrote:Well, thank you all for your answers.

I've decided to go with Tysabri.

Best to you all.


I'm not sure how a newly diagnosed MS patient with a confirmed history of B12 deficiency winds up on such an aggressive MS drug. However, I wish you the best and hope that it doesn't turn out for the worst, e.g., either PML or IRIS. You may wish to read the posts I've linked to here tysabri-antegren-or-natalizumab-f11/topic25590.html#p230527 Please stick around and let us know how things are going for you.
User avatar
NHE
Volunteer Moderator
 
Posts: 4274
Joined: Sat Nov 20, 2004 3:00 pm

Re: Considering Tysabri - questions...

Postby kw202 » Fri Jan 29, 2016 4:59 am

Well, by the time I saw my ms specialist my b12 had been boosted to around 730 with no appreciable help with symptoms. Personally I don't think that's what it is, on balance. My specialists recommended tysabri because of how active my ms was with this first outbreak and my already accumulated spinal lesion load. The most effective drug seems like a wise choice to me.

Also I'm jcv negative, so that made my choice a lot easier. I'm aware of the possibilities of false negatives and seroconversion but for now in comfortable with the choice.

I thank you from the bottom of my heart for all the help you and everyone else has given me.
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm

Re: Considering Tysabri - questions...

Postby NHE » Fri Jan 29, 2016 5:21 am

Hi kw202,
If it's not already in your supplement regimen, then you might want to consider adding omega-3 oils from fish oil. You want to aim for about 1-2 g/day of combined DHA and EPA. The brain is about 60% fat and about 30% of the fat in gray matter is DHA.

Essential fatty acids and human brain.
http://www.ncbi.nlm.nih.gov/pubmed/20329590

Docosahexaenoic Acid (DHA): An Ancient Nutrient for the Modern Human Brain
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3257695/

DHA/AA - Are They Important?
http://www.dhababy.com/aboutdha/dhaaaar ... rtant.aspx
User avatar
NHE
Volunteer Moderator
 
Posts: 4274
Joined: Sat Nov 20, 2004 3:00 pm

Re: Considering Tysabri - questions...

Postby kw202 » Fri Jan 29, 2016 5:45 am

NHE wrote:Hi kw202,
If it's not already in your supplement regimen, then you might want to consider adding omega-3 oils from fish oil. You want to aim for about 1-2 g/day of combined DHA and EPA. The brain is about 60% fat and about 30% of the fat in gray matter is DHA.


Another excellent suggestion, I do supplement with omega-3, following the Jelinek diet and supplementation protocol (which is basically no-oil, non-dairy pescaterian+vitamin D+omega-3 supplementation). I take about 30ml of flax oil a day (~1.5g of ALA for my current brand Barlean's, I won't even attempt to try to convert that to DHA/EPA :o ) plus I eat oily fish no less than 3x/week, following his recommendations.

He used to recommend mostly fish oil for omega-3 supplementation, but the HOLISM study showed flax oil was more effective at preventing relapses than fish oil (https://overcomingms.org/holism-study/) - specifically (https://overcomingms.org/wp-content/uploads/Omega-3.pdf). Most effective was combining flax oil with fresh oily fish.

If you're curious about the Jelinek OMS plan, that's his website (https://overcomingms.org/recovery-program/).

Thank you again!!
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm

Re: Considering Tysabri - questions...

Postby lyndacarol » Fri Jan 29, 2016 8:31 am

Hi kw202,
We wish you the very best with your choice of Tysabri; but, frankly, I am very concerned – the danger of PML is very real. As I recall reading, PML has even appeared in people who were JCV negative.

So, please work closely with the prescribing physician, with FREQUENT monitoring – blood tests and face-to-face evaluations.

As for your B12 level having been boosted to 730 pg/mL… remember that it is possible to have a good level in the blood, but if the B12 is not carried on the proper transporter molecule, it may not be reaching the cells – it is possible still to have B12 deficiency in the tissues (a.k.a. a functional deficiency of B12). If available in your area, try to get the HoloTc test.

Also, as I recall, your vitamin D level was 9.9 ng/mL at one time; then you got it up to 33.3 ng/L. Have you gotten it to and maintained it at 90 (which, I think, your neuro had targeted)? With recent attention on the Coimbra protocol (coimbra-high-dose-vitamin-d-protocol-f57/) I would hope a D3 level in the high-end of the reference range would bring benefits to you.

Please keep us up to date on your status. We really care about you and wish you all the best.
User avatar
lyndacarol
Family Elder
 
Posts: 3318
Joined: Thu Dec 22, 2005 3:00 pm

Re: Considering Tysabri - questions...

Postby kw202 » Fri Jan 29, 2016 8:53 am

lyndacarol wrote:Hi kw202,
We wish you the very best with your choice of Tysabri; but, frankly, I am very concerned – the danger of PML is very real. As I recall reading, PML has even appeared in people who were JCV negative.


Thank you! Trust me the PML risk scares me as well, but I scrubbed the literature and so far only three Tysabri patients who were JCV- have gotten PML; likely they were all false negatives.

One woman contracted PML 2 weeks after a test that returned a JCV- score, so that is concerning - however, this article (http://www.neurology.org/content/early/ ... 2330.short) suggests that MRIs she had soon before her test showed new lesions, which should not have happened on Tysabri and was a hint that not all was well with her JCV status and should have prompted more concern from her neuro. I discussed this with my MS specialist and she agreed that new activity really shouldn't show on Tysabri and so the MRIs should have been a big clue. She seems on top of it and I trust that we will make a good team -- I'll have MRIs and new bloodwork to check my JCV status every six months.

From my reading of the literature, no one has gotten PML until after the 12-month mark on Tysabri, so I should have two more JCV tests under my belt and at that point I think I can feel relatively sure that my JCV- status is not due to a false negative. It's a calculated risk, but aren't they all with MS?

Also, as I recall, your vitamin D level was 9.9 ng/mL at one time; then you got it up to 33.3 ng/L. Have you gotten it to and maintained it at 90 (which, I think, your neuro had targeted)? With recent attention on the Coimbra protocol (coimbra-high-dose-vitamin-d-protocol-f57/) I would hope a D3 level in the high-end of the reference range would bring benefits to you.


My last test, which was a few weeks ago, I had gotten my level up to 58 ng/L. I'm now doing my third round of megadosing, using the method that last time gave me a ~30-point bump. So if that holds true this time, it should boost me to ~90. I'll find out in March how effective this third (and hopefully last) round of megadosing has been when I get my bloodwork redone. Then I get to try to figure out a maintenance dose, which I'm not at all sure about!

Thank you again! I am not going anywhere anytime soon so y'all will have to put up with me for a bit longer.
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm

Re: Considering Tysabri - questions...

Postby lyndacarol » Fri Jan 29, 2016 1:01 pm

Posted by cheerleader on 3/31/2015: post233396.html?hilit=PML

Harry hasn't updated recently--thought it might be a good idea.
The cases of PML continue to grow--- Biogen reports 541
http://chefarztfrau.de/?page_id=716

and ehealthme.com, an independent site is reporting 2,943 people with PML
http://www.ehealthme.com/ds/tysabri/pml

dear mccpm---
you can change from being JC- to JC+.
There have been many more documented cases of people who initially were JC-, then changed to positive before developing PML. That's why it's essential to keep testing.
A longitudinal serological follow-up from the combined AFFIRM and STRATIFY-1 studies showed, however, that only 87% of patients who were anti-JCV antibody negative at baseline remained consistently negative every 6 months over a period of 18 months (53) meaning that nearly 13% could become positive during follow-up.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4283628/

Here's some research I put together for my husband, when his neuro was pushing Tysabri. He brought it to his neuro, and she stopped mentioning Tysabri to him. https://www.facebook.com/notes/ccsvi-in ... 1616067211

best of luck!
cheer


Just be careful, kw202.
User avatar
lyndacarol
Family Elder
 
Posts: 3318
Joined: Thu Dec 22, 2005 3:00 pm

Re: Considering Tysabri - questions...

Postby kw202 » Fri Feb 05, 2016 7:48 am

I will! You'll have to try harder to get rid of me. :o

Monday is my first infusion, and I'm a little nervous but mostly because I can be a bit hard to stick (thanks for the rolling veins, dad). Looking forward to getting this going. I'm choosing to view it as shoring up my armor, so I'm ready.
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm

Re: Considering Tysabri - questions...

Postby kw202 » Fri Feb 12, 2016 8:37 am

All right, that's done. It wasn't bad, really. In fact it was fine. The nurse got me on the first stick (BLESS YOU).

The infusion itself gave me a bit of a head rush-y feeling, but by the time I left the office it had dissipated to a bit of pressure behind my eyes, and that faded soon after. I did feel tired right after the bag finished, but the saline drip after seemed to perk me up. I was tireder than normal and went to bed earlier than my usual that night, but since then I have felt normal - my usual.

Hoping that's all the side effects I'll have. Thanks again for all the advice!
kw202
Family Member
 
Posts: 77
Joined: Thu Nov 19, 2015 2:43 pm


Return to Tysabri (Antegren or Natalizumab)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service