Gilenya vs. Tysabri?

[debgen]

Last week I posted "Devastated" and received many helpful responses- tha thank you.

Since then my MSpecialist recommended that I begin Gilenya. I love the Ida of taking a pill instead of injections, after injecting every day with Copaxone, but some of the side effects scare me.

I originally wanted to try Tysebri, but thought that I couldn't once I tested JC positive.
Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off! Has anyone gone off Tysabri and had these negative effects?

Of course the decision keeps getting tougher for me. Today I began a 5 day steroid i infusion treatment to reduce inflammation from my many recent flare ups. While at the infusion center I spoke with a few people who ere there for their monthly Tysabri infusion. They all are having amazing success with it. All told me how much better they feel. Non have had any flare ups or relapses and swore that they were actually improving. One woman used to always walk with a cane and doesn't need it anymore. Another said the same thing about her walker. I felt such hope! Are these stories too good to be true?

At this point I am thinking that if I can get a few great years o Tysabri and finally get some of my life back, I would like to try it. I am also thinking hooefully some new DMD will be on the market to try in 2 years!

Please share your Tysabri and Gilenya experiences with me. I realize it will obviously be my personal decision but I really want to make an informed decision and honestly there is no one that I trust on MS matters than our wonderful community. You are all the bes!!!

(((hugs)))
Deb

[Michelle2319]

Hi,

I was diagnosed with MS in 2005. I have been through 4 different treatments including Tysabri and Gilenya. I was on Tysabri for 4 years before I was able to take the JC test in which I was positive for the antibodies,  so they have now switched me to Gilenya. I am on the fence at the moment of whether or not to change to a different medication.  I have fatigue and or wobbly left leg after I go for a walk. My ms attacks the right side of my brain so my left side continues to weaken

[LivGrey]

Hi Deb,
I've been on Tysabri for 4 years, and yes, it has turned my life around.  

In a matter of months, I went from walking & working as a computer/network technician to feeling useless in a wheelchair, then I started Tysabri.  It healed the lesion on my spine, and though I have to walk with a staff if I want to walk for very long, I can walk as much as a mile.  I couldn't even walk one block before I started.

Recently I tested positive for the JC virus. It is terrifying news.  I have decided to say on Tysabri, and get tests done much more frequently, for now, because I hate the idea of being trapped in a wheelchair as much as the idea of dying from pml, but I don't have to live past dying.  :P  

I know it's not a good choice, but there isn't anything better right now (or even anything as good).  If your ms isn't bad enough to need the Tysabri, and Gelenia is enough, I would suggest going that route, but if Gelenia isn't enough, give some serious thought to Tysabri, and I hope for the best for you, either way.

[Cosmobirdy]

I haven't been on the forum in a while, and I just saw your post.  I am on Tysabri, and will get #50 next week.  I am also JC positive.

The test was not available when I started Tysabri back in 2008.  I had worked in health care for 25 years, so I just assumed I was JC positive and made decision to start Tysabri with that in mind.  I found out for sure a couple of years ago when I had the first test for the virus.  We decided (my neuro, me and my hubby) to stay with Tysabri as it seemed to be slowing down the parade of symptoms - I had been on Rebif and was on a rapid downhill slide.

It has not been an easy ride for me, but we all feel it is the best of the options for me at this time.  I keep up on the PML stats, and the changing risk estimates, and discuss this with my neuro regularly.  He watches me closely, and is the one who actually starts my IV each month, so i have regular face time with him.  I get an MRI every 6 months.

I have not forgotten how hard it is to make this decision.  You are looking at all the aspects of your choices, which is great.  Feel free to PM me any time - I'm happy to help if I can ...:-)

Rita

[debgen]

Hi JJLL

As Shell said, welcome to our forum and thanks for your response!

I am so happy to hear that your wife is doing so well on the Tysabri and I truly hope she continues to do well.

I feel like this is the biggest decision of my life and I am so grateful for everyone sharing their experiences with these 2 drugs with me.

Hugs to all!
Deb

[sllowe]

Hi JJLL,

Welcome to our forum. I've only seen you one other time on the forum, so thanks for coming back by!

Glad the Tysabri is working for your wife! Great news!

Many of us are on varying CRABS, or what some call DMDs for MS, and are successful since what works for one, may not for another. I'm glad we have the options we have, and don't feel it's a waste of time trying them :)

Very much hope she continues to do well. There are a couple members JC+ still on Tysabri on the forum that I'm aware of. A risk they are willing to take due to their overall stability. I cannot imagine the decision process that one must go through when facing tough decisions like this. She's lucky to have you by her side :)

-shell

[JJLL]

After wasting her first year post diagnosis with the CRAB drugs, her neuro switched my wife to Tysabri.  The two factors that dissuade neuros from use of Tysabri are (1) testing JCV+ AND (2) having previously taken strong immuinosuppresent (chemo) drugs.  But after 4 years on Tysabri, my wife tested positive for JCV, and yet her neuro suggested that she stay with Tysabri because she has been doing so well with it.  She just had her 60th infusion.

[debgen]

Thank you Ann! This is my first response from someone on Gilenya and it has been very up lifting. I didn't know the death rate of either drug. It all scares me. I am much older than you (55) and have had MS for 30 years so I have a lot of nerve damage. I am considering the Ty because I have heard that it actually can reverse some of the damage.

I will be discussing all this with my neuro next week.

Thanks again for sharin your Gilenya experience. I truly appreciate it!

Stay well :)
Deb

[opie74]

Hi!
I am on Gilenya.  I really have had few if any side effects.  In the beginning, there was a slight thinning of my hair, and I did have one major relapse the first year.  My doc said that since I am now 38, and have a healthy heat and liver that I was a good candidate.  He likes to save Ty as a last resort. There havebeen more deaths on Ty than gilenya. I have 3 children, and I need my energy to chase after them. I have not had any worsening of fatigue with Gilenya. Also Ty SEEMS to increase you risk of catching every little thing that comes along.  with 2 of mine in lower elementry, it is like living with 2 Petry dishes!

I know that this is a tough decision. I am in no way telling you what to do. However, I did want to share with you a positive experience with gilenya.  It has cut my relapse rate in half or better! I don't enven know that I am taking it. I have their co-pay assistance and it is FREE.

Let us know what you decide. In the end the only bad decision is not taking positive action. Make your decision and make peace with it. Staying worried will not help you fight your MS.

Blessing to you,
Ann

[debgen]

Thanks Lu!

My head is spinning. I am literally making a pros/cons list of Tysabri and Gilenya and will review it eith my neuro when I see him on Wednesday. At this point I am leaning toward Tysabri because of reasons I just posted.

Ugh! This is such a huge decision...

Thanks for your support!
Deb

[Lulu54]

That is a great strategy - buying time until the next choice comes along.  I am on Ty and had a relapse earlier this summer.  I have had 7 infusions.  my decision was simple because I  am JC negative.  I do know they have many safeguards in place.

The recent studies show that coming off Tysabri can be wicked - it takes a good 4 months of so to stabilize and during that time many many people report serious relapse problems.  If you go off ty and want to try Gilenya, you will probably have a 3 month washout period before you can start the new drug.  many people are treated with regular doses of steroids during that time.

Good luck with this decision - it's not easy.
Lulu

[debgen]

Hi Chris,

It helps a lot! That it what I have been thinking too. I just want the Ty to buy me a couple of quality years when hopefully some new drug will be available. So many treatments are already in stage 3 trials. It is looking promising. My neuro also told me it was my best chance of slowing down my rapid progression. I hope your flare ends soon.

Stay well!
Deb

[saucygrl]

Hi Deb.  I have my 4th Tysabri infusion this Friday.  I am currently having a flare, but my neuro said that I hadn't reached the "fully protected" point yet.  I have to say that it is MUCH LESS severe than my last one.  She told me we could do steroids, but I chose not to.  Even though my symptoms are irritating, they aren't worth the side effects of the steroids.  

I've also read that people have worse flares once they go off of it, but I have a friend who was on it and has stayed stable.  I'm hoping that my time on Ty will buy enough time for other/better possibilities.  My neuro said right now it is the best possible medication to try and slow down my very active MS.  

Hope this helps a little!

Chris

[debgen]

Thanks Michelle, Shell and Sarah for responding your comments and support mean so much to me!

I like the idea of the pros/con list for both drugs and will continue to research but I know the decision really needs to happen in the next couple of weeks.

Thanks again,
Deb

[SarahL2491]

I'm going out on a limb here because am sure all know I've had a rough time on Tysabri, so maybe I'm not the one to listen to, although I've certainly been "in the trenches" with it.

I'm JC+ also and true, there are those among us who've been on Ty for over 4 years and JC+.  I've only had 7 infusions so far.  The Ty rep told me at the last dinner I went to, that no one had died from the PML virus who was ONLY on Ty.  The deaths occurred from people taking more than one MS drug at the same time.

I too seem to be one of those with extreme drug sensitivity.  Even my regular MS drugs (and I detest taking drugs anyway) I have to occasionally go off of for a week or so.

I've experienced a range of side effects from Ty, the latest being a trip to the ER and now 8 days and counting, that I've been laid up, but my doctor feels this is the drug I need to be on and has really worked to come up with steroids and other drugs to counteract the side effects.  I am finally feeling better today.

The drug company has been extremely cooperative, I've talked with them, and have worked with their drug safety department and files have been sent to the FDA regarding my side effects.  They've been fantastic.  They all seem to take their FDA regulations (TOUCH program) seriously.  They are very supportive and always just a phone call away and you get to know the team.  I had trouble with one of the hospitals I was using and went to them and they straightened it out FAST without anyone knowing I was behind it.  I can't say enough good things about Biogen's team.

I continue on Ty for several reasons.  
1)I trust my neuro, he's been there to back me all the way and seems to really care about ME as a real patient rather than just a patient file,

2)I've had a relapse on Ty but nothing like the ones before I started it,

3)because its so tightly regulated, they pay attention to it,

4) its covered by Medicare and Medigap since its outpatient (my two insurances cover 100% of it)

,5) the once ever 28 days IS nice, and although Gly is supposed to be good, it scares me, its way too new for me.  Ty goes back more than 6 yrs on the actual market (I know about it being off the market for a few years).

So although I often say Ty makes me feel like I am being slowly poisoned, and that's what it felt like, my first move should have been to call my neuro!
I toughed it out and feel that had I got ahold of him right away, I might not have spent a week and a half out of commission.

In the end, its your decision, as Shell says, so true.  When I considered going off of Ty, I made a chart and put all of the DMD drugs side by side and blacked out the side effects I was unwilling to put up with, including the cost of the other drugs being Tier 4 with a 33% co-pay, and looked at what was left.  

I know where you are coming from!  It was a scary thought to make the decision but there are risks to everything, particularly DMD drugs.  

Hang in there, we're all here to support you regardless of your decision!

[sllowe]

Hey Deb,

I have no experience to lend, just felt compelled to say that this is surely a tough decision to make, and placing myself in your shoes, I truly would not know which way to go.

Besides asking folks here, and getting such good input from Michelle, only other thing I'd do is put thoughts and definites on paper like this  JC+  = increased risk of PML, Gilenya {add the effects that scare you }
Also add what appeals to you as well, i.e., potential years of feeling well, though since there are not guarantees, each side may have that as a want.

Wishing you well with this decision, and hope others see this and lend their thoughts soon!
(((Hugs)))
shell

[michelleric]

Hi Deb,

Both of those were also presented to me as options about 2 years ago, I think 2?

Gilenya came off the table due to asthma and eye issues.

Was on Ty since 1/11.  Had to go off last summer due to virus in vocal cords.  They thought, and still think it was related to Ty.  (I am the "weird" one, and tend to get bizarre side effects from meds.)

I had NO voice for 3 months.  It was awful.  Went back on in oct 11 and stopped 2 months ago.  Again weird voice started and I was still progressing downward.

Anyway, I have heard many wonderful stories about Ty.  I would say 90% of people I know on it are very happy with it.  Also I know people who are jc positive and have been on it for many years.

Good luck with your decision,  it's a tough one,
Michelle