Gilenya vs Tysabri

[sbates]

I was started on Gilenya a month ago. It is the only dmd I have taken so far. At my follow up visit this Monday, my neuro decided she wants an MRI of my spinal cord. Before they did not need it because of the amount of lesions on my brain and optic nerves, they did not need it to make a dx. She did tell me that if I have lesions on my spinal cord she would like to consider switching me to Tysabri. So I'm guessing that's a stronger dmd? I know there is a small risk but the whole PML thing is a bit scary to me. So is the fact that she is a ms specialist and told me that I have one of the worst cases of ms she has ever seen in my stage of the disease. (newly dx'd rrms)

I guess I'm asking for peoples preferences in the 2 drugs?

Does anyone have the trifecta of lesions in all 3 places? If so, how does that effect you overall, and what medication are you on?

[Marco]

sbates - sorry to read about your situation. I'm glad your current neurologist is trying to get the full picture of your condition and progression. Did they also draw blood for the JCV test?


Getting the progression under control is important to prevent a race for the bottom. I also have lesions in all 3 places. At one point, my neurologist had considered putting me on Tysabri for just 6-months to try and get an advantage over the MS. I am now on Tecfidera and will be for as long as possible. After Tecfidera, I will be moving to Tysabri, a CURE (hopefully) or a newer medication (Lemtrada or even newer medication).

Tysabri is normally used when other therapies have failed to adequately delay MS progression. It is also used for patients with more aggressive MS. Tysabri does have a small PML risk, but when adequately monitored is considered relatively safe until roughly the 2-year mark. Afterwards a second discussion should be had about the increased risks of PML.

Please keep us updated and I wish you well ...

[sbates]

Marco- Thank you for the info. They have done the jcv test and it was negative. They use the word aggressive frequently when they talk about my ms. It's just so hard to comprehend because I was only dx'd 2 months ago.

Everything has moved so fast since then. Hospital visit, 3 appts with my neuro, appt with opthalmologist, neuro psych eval, and coming up a MRI of my spinal cord and possibly a visit to a urologist. I am grateful that they are being so thorough but I need it to slow down!

Since my first flare up I've had 2 pseudo exacerbations which they say are most likely due to the 3 UTI's I've had. My immune system can't fight it all I guess!

How quickly did yours progress? If you don't mind me asking...do you have any disabilities? Is it more likely that a person will be disabled if they have lesions in all 3 places?

One last thing about the Tysabri....how often do they test for the JC virus while you're taking the medication? I get that the risk is slim for PML but as I told the doc...it's not a side effect like nausea or constipation...it's death. It's just all kind of scary. Sorry for all the questions Marco. Hope to hear back from you!

[golfore]

sbates I was dx'd in 1988 when there were no meds. Even after the med's hit the market, the a b c drugs, I didn't go on anything until 1998 when I had my second flare.

I'm JC+ and have been on Ty since about 2006, soon after it was approved. I had a "holiday" from Ty last spring while I had spinal fusion surgery. I was off Ty for about 4 months.

As far as having lesions in 3 places, I think the more important thing is how much disability you have. I have been told many times that there is no direct correlation between lesions and disability. Someone can have many lesions and not much disability, and visa versa.

Since I've been on Ty I have been tested 2 times for the JC virus. The testing was only started about 3 years ago,,, I think. I believe that being JC - makes PML extremely unlikely. Tysabri is by far the best drug on the market for MS. No side effects, an infusion every 4 weeks, and the best efficacy of any MS drug.

Sounds like you have been getting lots of tests and are in good hands. Maybe let your Dr. know that your feeling a little (a lot) overwhelmed.

Good luck to you, I think you will be OK!!

[Marco]

It's completely normal to be overwhelmed so don't beat yourself up about it. At first, there is a flurry of tests and appointments and you still haven't had enough time to process the phrase "multiple sclerosis." Things will settle down and like golfore said don't be hesitant about telling your neurologist that you are feeling overwhelmed, pressed or whatever you are actually feeling. Some things may need to be prioritized and possibly delayed.

All of us will progress at different rates, but I will gladly answer your questions.

Q. How quickly did yours progress?
I was having an "incident" every 6 months that required medical attention or hospitalization. This past time it was 14 months between "incidents" so that is a big improvement. This is the type of result your neurologist is hoping to get from the Tysabri, an advantage over the disease.

Q. If you don't mind me asking...do you have any disabilities? I no longer work and have a hard time walking. I can walk short distances around the house, but outside I use everything from a cane to a wheelchair. The wheelchair allows me to participate in more events improving my quality of life.

Q. Is it more likely that a person will be disabled if they have lesions in all 3 places?
Not necessarily. You can have dozens of lesions and show zero signs of disability. I relate this to real estate where "location, location, location" is important.

Q. How often do they test for the JC virus while you're taking the medication? This is up to your neurologist, but you can ask for more frequent testing and see what your neurologist says.

It really sounds like your mind is racing a bit and we've all been there before. Just to remember to "breathe in and breathe out" every now and again. Don't let MS stop you from living, make it the catalyst to live life all the more passionately. Maybe on Monday nights you can watch your favorite movie, reread a favorite book before bed or go fishing every other Saturday. Take time to smell the roses, spend more time with your loved ones, get extra cheese on your favorite pizza or whatever. It's too easy to get consumed in the disease that you lose sight of the rest of life.

When time permits, I would encourage you to look at what counseling opportunities exist for you. Your neurologist may have a list of resources locally available and so may the NMSS (1-800-fight-ms). You're going through a ton of life change, chronic illness and potentially the grief cycle and a good professional can help you work through this insane period of your life. Things WILL eventually settle down because the disease will abate and you will begin to "responding instead of reacting" to certain aspects of it.

I am so glad you are willing to share your experience with us. We all learn from one another and can find inspiration in one another's life stories. If you have other questions please ask and I wish you well!

[KatieAgain]

I have the "trifecta". I have numerous lesions on the brain, one on my left optic nerve, one small lesion on my lumbar spine, and recently added two whoppers on my C-Spine. The C-Spine lesions are the worst for me.

I was Dx in 99. I have been through most of the CRAB drugs, was suppose to start Tecfidera, but got diverted to Tysabri when the C-Spine lesions showed up.

Tysabri is not normally a first line drug. However, MS Specialists are using it for people who absolutely can not tolerate or do not respond to the Orals or CRABS. They are also using it for people who initially present with a more significant progression of the disease.

I can still see even though I have had 3 bouts of Optic Neuritis, I can still walk though I do use a walking stick for shopping trips and exercise (I take the dog for walks everyday) and I still drive. I did retire though at the age of 46...I am currently 50.

I am only two infusions into Tysabri and am JCV-. It is without a doubt the best DMD I have ever been on. But I did not go on it until it was absolutely necessary and before it was too late.

I have had some great MS Specialists. I have relied on their judgement.

Wishing you the best.

[22cyclist]

sbates: I am on Tysabri after flunking all of the other medications. I started it before the oral medications came out. I am still JCV-.

JCV testing is done per the TOUCH protocol usually every 6 months. If you exhibit symptoms that are consistent with PML, you get an MRI. They ask you questions before each infusion to determine if you have symptoms of PML like have you had any confusion in the last month? If so, you do not get the infusion this month without the neurologists approval.

Tec is about 50% affective in preventing new lesions and stopping exacerbations; Tysabri is 80% affective at doing this. Ty is the most potent mainstream medication they have for treating MS. It works quite well.

I do have some disabilities but they were there before Ty. They are: I walk with a walker, or a scooter. I can't swallow very well. My eyesight is permanently blurry and double. I have to self-cath.

I hope things calm down for you. If you have to go on Ty, don't be afraid. It really is a good drug to slow the progression of your disease.

I wish you the best.

Take care
Lisa
Moderation Team

[sbates]

First, thank you all for your replies. It's nice of you to take out time to answer questions for us newbies. I have done a lot of research on my own but I like to hear other peoples experiences. This is the first time I have heard that the location of the lesions can cause different symptoms or disabilities. It makes so much sense now why everyones ms is different. You think doctors might add that tidbit of info in.

That may have been why I only showed minor symptoms over the past 10 years or so that never seemed worth going to the dr for. All of my old lesions are scattered in various places and there were too many to count. They said some of them are clustered together. The ones that caused my first flare up and I quote..."In summary, she has relapsing remitting multiple sclerosis with significant numbers of enhancing lesions. The lesion in the left parietal lobe measures about 3 cm and has ring enhancement. This would qualify as a tumefactive lesion. That is the reason I would like to start with a little more aggressive treatment than the average person. Given the severity of her disease, and onset, I would favor Gilenya." That was from my initial visit from my ms specialist. My follow up visit this past week I guess they have reason to believe I have lesions on my spinal cord as well based on my symptoms.

They discovered I had lesions on both optic nerves when I was in the hospital. They did not give me a number but I am relieved to read that most people with optic neuritis gain full vision back.

Marco- I do not have an actual disability but I have enough things going on right now that prevent me from working. I am currently on short term disability. My biggest issue is fatigue. I almost feel like I could handle the aches, pains, balance issues, muscle weakness, ect IF ONLY I weren't sooo tired all of the time. I went back to work for 2 weeks after my first flare because my pcp said I could choose to go whenever I want. This was before I saw a neuro. I was so ready to get back to a normal life that I rushed into it and pushed myself so hard that I had another flare. Well not actually, I was told it was a pseudo exacerbation.

It seems like a vicious cycle. I was on steroids for a flare. Then I got a UTI which I was told could be because the steroids weakened my immune system. Then I had another UTI right after that one was cleared up. Then I got a yeast infection from the antibiotics. Then I was told the stress I put on myself plus the infections were causing pseudo exacerbations. Which means I may have to have more steroids. Where does it end? Seems like it goes in circles.

Oh and I'm going to be prone to UTI's forever because I have a neurogenic bladder and have to take meds several times a day to be able to go. I'm not able to empty my bladder completely which means urinary frequency and.....potential UTI's. Who doesn't love to pee 30+ times daily when they are already fatigued?

I really hope I haven't offended anyone with my rant. I know some of you have real disabilities and some of you lived in a time when there weren't even treatments. In some ways I am very fortunate but I'm just so scared of what the future holds. I have severe anxiety and have had it long before the ms diagnosis. I know I have an excellent neuro who is doing everything she can to find the best treatment for me. But even she can't predict the future for me.

I know it's an insane notion but I am a planner and I always need to know what's going to happen next. Even before ms I would play out every outcome to every problem in my head until I would make myself crazy. I just need to feel like I'm prepared and I'm in control of my life or my anxiety goes wild. My boss even told me that this was the worst disease for my personality type.

Back to the original topic...I am now considering trying Tysabri if that's what my neuro recommends. I'm not completely sold but I'm not so against it. It helps to hear from people who are actually on it. Thank you all so much again and best wishes to you all!!!

[Kimba22]

Hi sbates,

Sorry to hear your MS Specialist says you have an aggressive course of MS. Hopefully, going on Tysabri would change all that for you!

I am on Tysabri as well. I wish I could've gone on it sooner, but I was unable to get MRIs (until technology advanced so I could have my pacemaker replaced with a MRI compatible one). So I've tried and failed 5 other DMT's, as well as the chemo drug Cytoxan. I have lesions in my spinal cord, as well as my brain & cervical spine.

I am JCV-, but we didn't know that before the JCV blood test was available, and the idea of PML was just too daunting for me with only spinal taps and CT scans as diagnostic tools to check for it. I'm finally stable (for now), but not without accumulating a great deal of disability.

"Then I was told the stress I put on myself plus the infections were causing pseudo exacerbations. Which means I may have to have more steroids. Where does it end? Seems like it goes in circles."
I'm sorry to hear of your pseudo exacerbations. They can be as rough as the real thing, but the good news is they go away quickly once whatever event caused them (like a fever) resolves.

You are not treated with steroids for pseudo exacerbations. Steroids are used to treat the inflammation that occurs during a true exacerbation, there is no inflammation in the CNS during a pseudo relapse. Here's a link about exacerbations: http://www.nationalmssociety.org/abo...ons/index.aspx Read about pseudo exacerbations in the green box to the right, and click on the pdf at the bottom, as well.

Steroids don't change the course of MS, and their use has serious side effects. http://www.nationalmssociety.org/abo...ids/index.aspx

"Oh and I'm going to be prone to UTI's forever because I have a neurogenic bladder and have to take meds several times a day to be able to go. I'm not able to empty my bladder completely which means urinary frequency and.....potential UTI's. Who doesn't love to pee 30+ times daily when they are already fatigued?"

I suggest getting to a urologist sooner rather than later. You would benefit from learning how to self-cath if you keep retaining urine. It may not sound very appealing to you, but it really is no big deal once you learn how to do it. I figured if little kids could do it, so could I. Took me a bit to master it, but I'm glad I learned how to do it.

The urologist will do some testing first to verify your problems are indeed caused by a neurogenic bladder. I had several UTIs in one year, and two of them led to sepsis (one of those events led to endocarditis) within months from each other (with a bad relapse in-between).

Mine were caused because I was still retaining some urine, even after I peed (which was often, as I also had urge incontinence). I haven't had a UTI since I learned how to self cath several months ago. Self-cathing also helps with urge-incontinence. It's a really good idea for you to get a handle on this now, as I waited until I had some serious complications from UTIs. Tysabri can also make you more prone to getting them.

I hope your course of MS slows, soon. The good news is Tysabri has the highest rate of efficacy.

Best wishes,