Wednesday, November 04, 2009

I'm breaking up with Tysabri!

I was supposed to have my 27th Tysabri infusion today. I happened to have an appointment with my neurologist the hour before my scheduled infusion. I had a few things on my list of things to talk about. Tysabri was the first - there has been a lot of activity in the last few months - an increased number of Tysabri patients who developed PML, and a study that showed that the longer one is on Tysabri, the more likely that one will develop PML. I had read that there was a test they could do to determine if you have the virus that causes PML, which would indicate whether continuing on Tysabri was the right thing for you.

I could see on his face as I talked that he was not thinking what I was. I was hoping I could do the test for the virus, and that would be that, and I'd continue along on my merry way with Tysabri.

He told me that the recalculated odds for PML for Tysabri users over 24 infusions are down to 1 in 600 - it started out as 1 in 1000 for everyone after the trials. The PML cases to date have occurred after 24 infusions. The odds have not changed, or have likely improved for those on their first 24 months of Ty. Because they are so uncomfortable with these odds, the three MS neurologists at my clinic (University of Colorado Hospital Rocky Mountain MS Clinic) have decided to take patients off Tysabri after infusion #24. They are going to the big gathering of MS neuro's in NY or London next week. They are supposed to coming up with a common protocol recommendation at those meetings.

He says he feels the risk of the Tysabri-withdrawal exacerbation is less worrisome than the risk of possible post-24-infusion PML with Tysabri. We talked for quite a while about it.

I figured it was coming. I had told myself that I would stay on it for another 6 months. My own intuition was starting to speak up and say "I think it's time". But they are coming out with this a little earlier than I expected. I certainly didn't expect it today. His recommendation is to do a one-day course of preventive steroid infusion once a month for a few months to combat the risk of the Tysabri-withdrawal exacerbation. Then he would like me to use Rituxan. I know precious little about Rituxan, so I've got some reading to do. Apparently the efficacy of Rituxan is equivalent to Ty.

Have I mentioned I hate steroids? Yes, I have.

Still processing all of it. Tysabri has been great for me and I'm a little sad and scared to let go of it. ('Tysabri has been bery,bery good to me...' ) No drama, though. It just means I go back onto the roller coaster of trial and error MS meds until the next great thing comes along. My belief is that, because I am doing the MS-Diet, I stand a much smaller chance of having the withdrawal exacerbation. Apparently those tend to happen within 90 days.

In the end, I will likely do what he is suggesting with the steroids. I think one-day is tolerable. I do not tolerate the 3 or 5 day course. I will at least try it one time. I really, really, REALLY do not want to go backwards with MS. I have been there, done that, and I am willing to do a lot to avoid it. I don't know about Rituxan. I'll read about it and see what my gut tells me. I feel like the diet is really the thing that has so dramatically decreased my episodes, so I don't plan to rush into any other drug until I feel sure. I have gone to 4 neurology MS clinics over the last 11 years, and as far as western-medicine-type stuff goes, I trust this clinic. While I was there, we got another opinion from Tim Vollmer, another neurologist in the clinic. He agreed. It might be interesting to go to the clinic across town and see what they say, but because my gut was telling me to go this way anyway, I'd rather invest the time figuring out my next plan.

Thanks, Tysabri. You helped stopped my progression for two years!!


Courtney said...

speechless. Thinking about you! Keep us posted!

Lisa Emrich said...

I'm switching to Rituxan also. Since I also have RA, it won't be technically off-label. But I wouldn't have brought it up with my rheumatologist without the knowledge that it looks very promising for RRMS. And my MS has not been a good little imp lately.

trrish said...

Lisa, it seems like it could be the perfect med for your situation. I will keep up with you - I'm interested in how it goes.

sherri said...

I was on Tysabri 20 months. It certainly stopped my complaints here. I went off it in May of this year because I was getting recurring respiratory infections. My neurologist and I decided it was time for a holiday. I was so scared to go off the drug that I cried for days. All I could think about was the report I read months ago about how rapid the progression is after going off Tysabri. My neurologist reassured me that if progression returned, it would be after the washout period: 3 months.

In the mean time she wrote me a prescription for low dose naltrexone (LDN). It was first approved for alcohol and drug users to help them kick their habits. The doses were 50mg - 300mg. Researchers, however, found that in lower doses such as 3mg - 4.5mg, it produced endorphins which helps regulate the immune system. It is used off-label to help people with autoimmune diseases.

I started on 3mg and now I'm at the maximum dosage of 4.5mg. It's a pill I take every night before I go to bed. It has given me a tremendous amount of energy and has kept the MS at bay. I just went in last week for an MRI. The results: no new activity! I've been on LDN for six months now with no other disease-modifying therapies. I was originally skeptic of the claims of LDN, but now I tend to think others who are using it are being honest about their experiences. I’ve heard from people who said they’ve been on it for five years now without having any exacerbations. It certainly lends more credibility to LDN!

Talk to your neuro about putting you on this instead of the steroids and Rituxan. It's safe, has no side effects and isn't expensive. It costs me around $22 a month, and that includes shipping. Docs seem to be a little more reluctant to put their patients on this because it’s off-label and there have not been large, double-blind clinical trials. There have been smaller trials conducted with positive results. The reason the larger clinical trials haven’t been conducted is because they cost upwards of a million dollars and pharmaceutical companies won’t stand to benefit from this inexpensive medication (like the CRABs).

Here's a website with more information about LDN: I have no vested interest in this other than to let others know what it can do.

trrish said...

Hi Sherri,

Thanks so much for your comment.

I have asked two neurologists at my clinic about LDN. One of them was really snippy and told me to stop getting my info from the internet. The other was more considered, but isn't into it because of the lack of data. He also suggested that people having success with LDN have a more benign course. The controversy over it drives me crazy.

So I need to go elsewhere if I want to try it.

i am going to give it some serious thought. I have had a few MS'ers recommend it to me. I'm very open to it.

sherri said...

I forgot to mention I have two neurologists who treat me. My main neurologist, Dr. Amy Akers, is not an MS specialist, but she's good and I like her. The other neurologist is at UCSF MS Center, and he is the director over that center. Although Dr. Akers wrote the prescription for LDN, she thought I should go back on Copaxone in September. She also mentioned pulse steroids again. I told her I wanted to talk to Dr. Goodin at UCSF before making that decision. When I met with him two weeks later, he said I didn't need to go back on any disease-modifying drugs or steroids and that I should stay on LDN unless new symptoms started to appear (either physically or on the MRI). He called her and she agreed with his assessment.

Stand up for what you feel is right for your body. I wish you the best and please, please feel free to e-mail me if you have questions:


sherri said...

My disease progression wasn't benign at all. I was dx in May '06 with 10 lesions on the MRI. They confirmed MS without the lumbar puncture. 15 months later that number grew to more than 60. I had four rounds of optic neuritis, two bouts of diplopia, a case of oscillopsia (when the vision scrolls like the movie credits at the end of the movie), pain, difficulty walking and talking, seizures...the list goes on. Dr. Akers believed had I not been on Tysabri that I would be dead now. I agree. You can tell the neurologist that he/she was wrong about LDN helping those with a benign course! lol

You're right. You'll need to go to a different doctor if you want to try LDN. It's too bad your neurologists don't see the benefit. I wish you were here in SF...I would hook you up with some awesome docs! :)

By the way, on the LDN website I gave you there's a list of doctors who prescribe it over the phone. You have to provide them with detailed medical records and you go through a rather lengthly phone consultation.

trrish said...

No, I wouldn't say that's a benign course.

I also work with another neuro here in Denver - she calls herself a holistic neurologist. She's helped me tremendously with finding the right supplements to support my particular body. I am going to ask her about LDN. If anyone is open to it, she would be. I can't believe I didn't think of that before.

Thanks, Sherri. I will check the site.

Jackie Z said...

Wow thanks for this post. I am in a position to which I have been considering Tysabri but was really nervous about it. I had been reading more and more about PML but didn't really realize that the ratios were falling quite that fast. Thanks for this post...I'll probably be re thinking this completely.

trrish said...

HI Jackie,

You know, I think the way I phrased what I said about the recalculated odds was not very clear. i am going to change it.

The "1 in 600" odds regarding PML applies to infusion #25 and beyond. The first 24 infusions are still much lower risk - 1 in 1200, I believe.

If I had recently been diagnosed with MS and was having a lot of trouble, I would totally do Tysabri for the next two years. And I'd feel even better about than I did in reality, because now I would know that the PML cases all appear to happen later.

My point with this post is definitely NOT to scare anyone about Tysabri. I am glad to have used it for 2 years. I was going downhill like crazy before I went on it.

My other point with this post is that the MS-Diet is a huge part of why I have done as well as I have in the past year - I had the best MS year since my diagnosis 11 years ago. For me, Tysabri + Diet = the most success I've had. Now I have to rethink part of that equation. I won't be giving up the diet, as challenging as it can be. It is completely worth it.


Jackie Z said...

Ok...I appreciate the clarification. Although I still am somewhat nervous about taking on a medication in which I may have to just change in 2 years! Ugh...I'm so tired of choosing new medications.

Ok perhaps tysabri is still in the running...although I'm currently on an immunosuppresant so I dont know if I can even take tysabri anyway.

But maybe I'll have to relook into it and talk to all of my doctors about it.

Thanks again.


trrish said...


Yay - I'm glad you saw that.

You know, one of the things about MS that I've accepted is that every couple of years, it all changes, for one reason or another. One of those reasons is that there is a new drug that seems promising. So, you can bet that in two years, you'd be changing your plan no matter what. Tovaxin or something else might be available then.

In any case, I wish you all the best with your research and your decision. We all do it our own way!


Anonymous said...

I don't have MS, but I want to post that my friend's 35-yr-old wife is now dying of PML, she was on Tysabri for 14 months, I believe. I don't know much yet, but I believe that strict and frequent monitoring is essential in detecting PML early enough to avoid severe disability or death.

I don't know if she is in the 24 cases reported so far, but I doubt it. Her neurologist was in Buffalo, NY, last week looking at another case. If I had MS, I'd be very interested in Tysabri because it has helped many, but I'd also be pretty cautious about going on it, and even more so if on it. I'm expecting this apparent increase in cases recently to be a medical news item of note before too long.

Most important: It seems Tysabri patients should be hyper-alert to any signs of trouble, and it seems that early detection of PML is vitally important.

I took the Web address of this thread and will give it to my friend after his wife passes away and he has finished his grieving.

trrish said...

Anonymous -

Thank you so much for commenting, and my heart goes out to your friend and his wife. That is sobering.

My observation over the past year being on Tysabri, is that they are slowing starting to get more proactive with it. They started doing more frequent scans, and some cognitive testing, at least with me.

It's tough balancing improved quality of life vs. the risk of PML. It's a lousy choice to have to make, and while I don't believe in being driven by fear, I also think we have to be realistic about what we're risking. And now we know more than we did before.

I look forward to a day when MS patients have much better options.

Anonymous said...

My friend's wife passed away peacefully last night at exactly midnight. Her mother was holding her hand and her beloved aunt was present also.

Next, at some point we will begin our efforts to focus attention on Tysabri and the risk of PML. Clearly, the drug has helped many, but much more has to be understood.

trrish said...

Anonymous -

Oh, I am so sorry. I'm glad she was able to have a peaceful passing with her loved ones.

If you can, keep in touch on what you do regarding Tysabri. I'll be interested.


Pamala said...

Trish, I'm in your EXACT situation. Only my doctor is not telling me to stop it. My infusion is set for this Monday. But my gut says STOP. I live in Fort Collins, Colorado, by the way. I feel sad and terrified at stopping. I don't even know anything about the Tysabri withdraw ... what is that? Is there ANY end to the anxiety MS brings with it??? I've never heard of Rituxan. I was going to ask to go back on Rebif. Have you heard of anyone going back on an interferon after stopping the Tysbri? Thanks so much!


Pamala said...

Did my message get posted? I live in Fort Collins, CO.

trrish said...

Hi Pamala,

I don't want to tell anyone what to do, but I will always say "listen to your gut".

The Tysabri "withdrawal" is just that 50% of people who go off of Ty end up with a relapse - usually sometime after 90 days.

it's my belief that if you go off of Tysabri, do some other disease-modifying thing - like the MS-Diet, LDN or whatever. They first suggested Copaxone to me. But that never worked for me in the first place. I don't know about going back on Rebif after some period of time (not sure what they'd recomment)

I started LDN - (some info here: a few weeks ago. It's going well, as I have gotten over a lot of the early adjustment period. This week I've felt better than I have in a long, long time.

I live right outside of Boulder. Let me know if you'd like to meet halfway sometime for tea.

What neurology clinic do you go to?