This Is MS Multiple Sclerosis Community: Knowledge & Support

I don't personally have MS. But my fiance does. She's currently in the hospital right now. The doctors found 5 new lesions on her brain and right now it's affecting her eyes. She's been on Copaxone since Mid-August or early September of this year and has had 2 relapses since then. The doctors are wanting to put her on Tysabri now, because they think that Copaxone isn't working. Which, I'm not sure if I 100% agree with. They said wait 6 months to really tell if it's really working or not, and this is about 5, so I think they should wait a few more months and see what happens. But I'm not a doctor, and I don't know a whole lot about MS, so...not my call obviously. But I'm mostly scared about her going on Tysabri. I've read and heard a lot about Tysabri and read a little on here. The brain infection is what scares me the most. I really wish she could skip Tysabri and go to another medicine, simply because of that reason, but she says she can't. I was curious if any of you were using Tysabri or knew anyone on it. What's the likely hood of something like that happening? What negative effects does Tysabri have? Or even positive notes about it. Any comments or advice would be nice. Thank you.

Hi Wesley199

I had Tysabri 55 last Wednesday. I have had no adverse reactions. I have had IV steroids twice in that time but they weren't major flareups. I am JCV negative. I found that my stamina improved greatly after starting Tysabri. I was diagnosed almost 24 years ago when there was no medication available and I often wonder if Tysabri had been available then would it have made much difference to my life. I like to think it would. I know a number of people on tysabri much younger then me and more recently diagnosed and they seem very happy with the treatment.

Best of luck to you and your fiance whatever you decide

Gymbuff

I'm sure that you have a thousand thoughts going through your mind because of the situation your fiance finds herself. When it comes to MS, there is no one answer that works because this disease affects everyone in a different way.

I don't have MS but my wife did. She had an initial attack back in 1971 but most of the symptoms went away and she went some 20 years living a normal life without disease activity. Back then, there was nothing to take for your MS. In the early 90s the symptoms started up again and they continued to become progressively worse. My wife died in 2007 from pancreatitis.

When her symptoms returned in the 90's, her neurologist didn't recommend any of the CRAB drugs (Copacone, Rebif, Betaseron,Avonex) because he told her they really didn't help all that much. Although not too many, some patients appeared to do OK on these drugs. The same can be said for Tysabri but since the drug is more powerful than any of the CRABs, the side effects can be more problematic. There are some patients, as you have read, that are doing well on the drug but there are also others who have had to stop it because of side effects. PML, of course, is the most serious one and they now test if the MS patient for the JC virus to determine if the use of Tysabri should be warranted.

This makes the choice of what medication to take all the more difficult. Some patients decide not to take anything but to try and control the disease with diet and alternative medicine. Some patients end up trying the various approved medications to try and see if one or any of them work. It is a painfully slow way of trying to cope with a disease that is so unpredictable, especially when starting out in life with a new partner.

Try and encourage your fiance to obtain as much info as possible so she can make an informed decision as to what direction to take. I've been in your shoes and don't envy your situation one bit.

Harry

Wesley,
I can empathize with your situation. I have been on Copaxone for over 2.5 years since being officially diagnosed with MS. I had done very well until entering a period of high disease activity with a severe relapse this last October. Until recently I had been very fearful of Tysabri as well. But within the last couple of weeks, after having discussions with my physicians and reviewing the literature out there, I have made the decision to switch over to Tysabri.
(So you know a bit about where I am coming from, I am a physician with MS; however, my specialty is pediatric emergency medicine. While I understand the medical literature I get my hands on, I still primarily rely on the expertise and advice of my MS specialists.)

The PROs of Tysabri (as I see them):
1. Most effective medication available
2. Very real hope of complete disease remission over a lengthy period of time
3. Very real possibility of recovery of some lost function

Tysabri seems to be the most effective medication we have right now at shutting down the disease process. A significant number of people are completely free of any disease activity at all (no relapses, no new MRI lesions) a year or two into taking the medication. In addition, a significant number of people taking the medication experience an improvement in their function, which is the most exciting aspect as far as I'm concerned. No other medication currently available can claim this.

The CONs:
1. PML
2. Rebound phenomenon

PML is the dark shadow hanging over this medication. Fortunately, over the past few years the medical community has been able to classify those that are at increased risk of PML. The risk factors are: 1) JC virus infection (there is a blood test for this); 2) Length of therapy with Tysabri (risk goes up after 24 doses, or 2 years on the medication); 3) Prior treatment with immunosuppressant medications. Taking these factors into consideration, your physician should be able to give you a indication of the risk for developing PML. Most of us physicians are reluctant to say never, but theoretically someone without prior JC virus infection should not be at risk for developing PML at all. And someone who has none of the risk factors is really at no risk, in my opinion.
(As for me ... alas, I am JC virus positive. My plan is to take the medication for a year in hopes of getting in under control and hopefully regaining some lost function. Then I hope to move to another medication after that. I have my eye on BG-12, which will be available by then, God willing.)

Another thing to discuss with your physician is the phenomenon of rebound after coming off of Tysabri. This is not well understood at this time. (Some believe it is real, others do not.) But there is the possibility that as Tysabri clears out of your system, the immune components in your blood that were suppressed by Tysabri will return and cause another relapse about 3 months after stopping the medication. This is particularly a concern for me, since I am planning on taking the medication short-term. It would be less of a concern for someone starting the medication who is JC virus negative and had never taken immunosuppressant medications (and thus is not expected to stop taking the medication for the foreseeable future).

In spite of the length of this post, it is a brief summary. As always, your physician (your fiancé's) will have more knowledge of her particular circumstances and offer better advice. But hopefully this provided more information for you and a better understanding of Tysabri. I would be happy to answer more questions if you have them.

God Bless you and your fiancé

I'd like to second everything Harry said. He's right on the money. One of the worst things about the disease is its unpredictability. People can go years between relapses or weeks. Thus, it becomes extremely difficult to tell what works (as you know from your current dilemma with Copaxone.) What's more, something that "works" for one person might not be working at all, they might just happen to have a mild form of the disease. However, what does work for one person is the way we form hypotheses, test them, and come to conclusions. Unfortunately, those of us with this disease don't have the luxury of waiting the years and years formal scientific research takes.

To that point, I would like to add that getting the disease under control and limiting damage early in the disease process seems to be critical. There is good literature (along with common sense) to support the fact that those who have less attacks and less disability early in the disease process do better in the long run. The brain can compensate some, but our ability to heal damaged nerves is quite limited. It is my personal belief that steps should be taken as early as possible to limit disease activity as much as possible as early in the disease process as possible. Of course, this will be a personal decision for your and your fiancé.

One book I found immensely helpful and empowering was Overcoming Multiple Sclerosis by George Jelinek. He explores the many ways there are to control MS--from diet and exercise to sunlight and supplements to medications and meditation--and the medical evidence that exists for each one. (BTW, no personal connections to the man or book. Just found it a wonderful, fascinating read as someone with MS.) I highly recommend it.

I believe one of the best things you can do for yourself and your fiancé is to begin to look for ways to educate yourself and, as a couple, take some control over her care. Having MS can leave people feeling helpless. Do everything you can to fight this by educating yourselves and being active in medical decisions. Your presence on this site indicates you are doing just that.

Wrkeller,

Thank you for your endorsement of my comments. It is appreciated.

Your closing paragraph, which I have quoted, is one of the best bits of information that I have read for young people trying to start out in a new life together with one of them having this lousy disease. It brings back a lot of memories in my situation.

Harry

Wesley, here are some numbers on the risks of developing PML while on Tysabri. These come from a presentation given to the American Academy of Neurology in April 2011.

JC virus negative: ≤0.11/1000
(Note: this risk is essentially 0. The only risk would be the very unlikely cases of someone testing negative for JC virus when they actually had the virus or if the infection developed in under one year, since those on Tysabri should be tested annually. Either of those instances would be very, very unlikely.)

JC virus positive:
No prior immunosuppressant use (0-2 years taking Tysabri): 0.35/1000
No prior immunosuppressant use (> 2 years taking Tysabri): 2.8/1000
Prior immunosuppressant use (0-2 years taking Tysabri): 1.2/1000
Prior immunosuppressant use (> 2 years taking Tysabri): 8.1/1000

JC virus is something (roughly) 60% of the general population will test positive for. From my conversations with my specialist, it seems that over a long period of time on Tysabri, the virus is able to go through mutations that allow it to gain access to the CNS and infect the brain tissue. So you have to have JC virus and you have to have time on the medicine to develop PML. Prior use of immunosuppressants reduces the time necessary for this process to take place.

Again, I am JC virus positive and am choosing to go on the medication for a year. From conversations with three separate neurologists (two of which are highly regarded MS specialists), the likelihood of developing PML within 12 doses of Tysabri is incredibly low. The benefits, at least in my opinion and these experts' opinions, outweigh the risks in my particular case.

I probably come off as being very pro-Tysabri. (I don't own stock, LOL). It's probably because I was where you are right now (contemplating starting the medication and being very scared) a short time ago and decided to go ahead and start the medication. But it was no easy decision, let me assure you.

Again, this will be a very personal decision between your fiancé, you, and her doctors.

Thanks so much for the information guys. I guess I'm starting to feel a little better about Tysabri. She just got released from the hospital today and before they make a decision on the medicine or not, she's gotta be off her steroids for about month and I believe she said the Copaxone for a little as well, so we'll still have to wait a little to figure it out I guess. I think Tysabri would help her a lot. Or I hope so at least. Just the PML part scares me quite a bit, but it seems like the chances are very very low for that, and they are going to check her blood, if they already haven't. The first time I ever talked to her we talked about her MS and stuff, and it didn't scare me away and I'm still with her today and not going anywhere, because of it. (Stupid reason to leave a person if ya ask me.) She has good days and bad days and days where she wants to give up, and I've been there for her the best I can. The days when she wants to give up is when I have to step in and be there a little more than other....if she lets me lol. She can be hard headed sometimes. I think she's been researching and looking at Tysabri also and is getting a little more fonder of it as well. I think she'll be thankful to not have to stab herself ever night, like with Copaxone. Also, Copaxone seemed to be extremely expensive, but she had health insurance pay for half I believe and Shared Solutions pay for what was left, but Shared Solutions seemed to be a little complicated sometimes, like they wanted to give her a hard time about it or not help her out or something. Is Tysabri that expensive and do they have any body willing to work with you if it is as pricey?

Also, if Tysabri doesn't work, what's after that? She's taken Rebiff, Avonex, and Copaxone (that's all as far as I can remember). She said something about oral drugs, but I haven't really looked in to any of these. Haven't really heard of any, so I guess I just don't know what I'm looking for.

This thread may answer your question. tysabri-antegren-or-natalizumab-f11/topic11899.html Your final out of pocket cost will depend on your insurance. Biogen does have an assistance program for under insured or low income uninsured patients.

NHE

Hi Wesley and welcome! Some of the other posters have given you extensive info about Tysabri, so I'll just note that the new oral med available here in the U.S. is Gilenya (formerly fingolimod in case you see it referred to in both ways).

There's a separate Gilenya forum here at TIMS also: gilenya-f43/ Being such a new med, it's not very active with posters telling their personal experiences, but there are quite a few links to info and if you post a question about it you're likely to get a response.

Other than that, I wish you well in your search;I've never taken any meds for MS. Good luck!

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

The wholesale cost of Tysabri is around $ 2300.00 per infusion. But the infusion cost is the stickler...it can range anywhere from about $ 1000 to $ 5000 (or even more in some places) for each session making the drug the most expensive therapy for MS to date. Only those who have insurance can seem to afford it. This info isn't to scare you but to let you know what the costs may be.

Harry

I am a 52 year old male, who has M.S. I am curently receiving Tysabri and I am JC possitive. I've been getting the drug for about 6 years now. I am considering the CCSVI proceedure now, not due to the threat of PML, but becuse this seems to be the best course for me. I've had the desase for about 14 years now, and am now having some trouble with mobility. This has been very difficult for me [I have always been a very active person]. Hope this helps. Brian

Greetings, this is my first time writing in this forum, hope it is for good... (pardon any error in orthography, since english is my second language). As well as some of you, I am considering with my neuro changing to Tysabri, after been on avonex since october 2010. This, because in the last MRI , an enhanced lesion appeared in the cervical spine. Well, at first I was also scared of the PML, but a lot of reading about the matter and testimonies from people using it, helped me decide to use it. Yesterday I receive my jcv results,and it turned out negative, so it is a good start. The only thing that concerns right now most, is my age... I have 20 years, diagnosed at the age of 16, so it would be like using the best catridges at the start and later what?... My best bet , is to consider new treatments will appear in the close future!

Any ways keep us updated about the situation of your companion, and your experience with T, it would also help people like me who are going to start it too....