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Julie  Stachowiak, Ph.D.

Are You Going to Continue to Take Tysabri?

By August 23, 2010

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Looks like people at Biogen Idec and Elan Corp., makers of Tysabri, have something to worry about. I usually don't follow the financials of the multiple sclerosis therapies too closely, but thought this one was pretty interesting.

An article in Dow Jones Newswires states "Deutsche Bank analyst Robyn Karnauskas recently projected that Tysabri's patient discontinuation rate, currently 2% to 3%, will skyrocket when oral therapies are available. She projects 20% of patients on the drug will stop using it in 2011 and 25% in 2012."

She predicts that US sales will decrease a full 40% by 2015 (from $633 million to $376 million), as new therapies come online. It is also not helping the situation that PML seems to be on the rise, with 5 new cases announced in the past week (see PML News That We Hate to Hear).

What about you? Are you on Tysabri? Are you planning to stay on it? Have you discontinued it? Why? Let us know your reasons in the comment section below.

Comments
August 23, 2010 at 10:41 pm
(1) jake says:

I have been on Tysabri for over two years. No way am I going to stop taking it over an oral med that offers significantly less protection from relapses and less protection from lesion formation. Robyn is a hack of an analyst who fails to consider these factors and what neurologist are saying.

August 24, 2010 at 12:42 am
(2) Linda says:

I’ve been on Tysabri for over 3 years now and don’t want to change because I haven’t had a single exacerbation since I started. However, I do have to say that I am concerned with the increased cases of PML the longer you are on the drug……..

August 24, 2010 at 6:20 am
(3) Nancy says:

This drug has been the answer for almost all of the people that take it. There are side effects with all drugs. The couple of cases that prove to be not successful are so few compare to the better quality of life for those that it works. I really think it is unlikely that people with good results, which is many will stop taking this drug. There just is no reason to do so.

August 24, 2010 at 6:24 am
(4) Lynn says:

I’m on Medicare with the donut hole. No way will I be able to afford the orals when they come out :(
My 4 year plan may include an oral med when the health insurance reform is complete, if it isn’t repealed, and the donut hole is phased out, making oral meds affordable on SSDI–else its Tysabri until Campath, now in phase 3 stage comes out with its 5 day infusions the first year & 3 days every year after that.

August 24, 2010 at 7:23 am
(5) Berta says:

I will be starting my 5th year. I am staying on it as long as I can. Tysabri gave me my life back.

September 24, 2011 at 9:37 pm
(6) Angie says:

You’ve been on tysabri for over 5 years?! Please, get in touch and tell me how you’re doing. I just started up again after a brief stint on Gilenya and would love to know more about how it affects you. I just took my 49th dose, and been looking for someone who’s been on it for at least that long.

August 24, 2010 at 8:58 am
(7) Jim says:

My wife has been on Tysabri for 34 months. Both of us are convinced it’s been a life-saver — she was going downhill fast before she started the therapy and has improved remarkably well since starting it. I am terrified at the thought of PML infection, but I also know that her quality of life would have been much, much worse if she had not taken the drug. If a new treatment came along that was just as effective as Tysabri, and did not have the risk of PML, certainly we would consider it — but any new treatment also may have potentially deadly side effects that won’t become apparent until much later.

August 24, 2010 at 9:08 am
(8) Jim says:

Dr. Julie,
Nice unbalanced article about Ty. Are you being paid by one of the competitors? No mention whatsoever about the tremendous benefits that Ty is providing to people that are on it. They have their life back, can function at much higher levels than pre-Ty. Usual competitor blog, only bad stuff not good. Go check out some of the websites to see all the good things Ty has done for people and then come back and make some informed comments.

August 24, 2010 at 10:51 am
(9) George says:

I’m on T. Initially, I had 2 Infusions while also on Rebif just as T was pulled. I returned to T when it was reintroduced. I am concerned over the long-term use of T and will switch when a safer treatment is available.

August 24, 2010 at 11:11 am
(10) Bob Livio says:

Been on Avonex 7 years now and felt it never worked, just made me more worse until i sttopped it for a month to give the Tysabri a chance. 1st shot was like a miracle, I felt so good after the shot which takes 1 hr to drip/pump in your vein. I couldn’t wait for the second one to materialize. Well unfortunately it made me not feeling good like the … See Morethe 1st shot dd. I woke up the next mornng couldn’t think right. Tryed to balance my checkbook. Couldnt do simple math. Both legs when I woke up were super stiff, couldn’t mov em. Got scared especially after the math problems. Couldn’t thin k right at all. Called the dr. to tell him and i forgot what i called him for. Wife reminded me and i still couldn’t think simple thoughts. Was warned about the possible brain problems and more and stiffness. No reversible damage. Scared me, Dr. took me off medication immediately. 4 weels later was able to go back on Avonex and almost ddnt make it, made 24 days with no doses, The next day afer avonex injection I started to really see that aonex does keep ya going but not in a good way, just a survival state, nothing more

August 24, 2010 at 11:46 am
(11) Steve says:

I’ll be on Tysabri until something else has proven itself safe on the market for several years. The other alternatives also have significant risks, and I question whether they’ve had the scrutiny Tysabri has. I’ve been very happy with Tysabri so far, so I’ll stick with it until the others have a proven *better* track record.

August 24, 2010 at 12:00 pm
(12) Steffi says:

I don’t use Tysabri, cause I’m anxious about PML and I’m not sure if it’s the right medication for me. I was also told that my insurance wouldn’t pay for it, cause I’m too healthy right now… (Have a lot of problems with walking, need to use crutches.. Have big problems with Fatigue and the MS increases for 6 month now..but I’m too healthy..lol..)

August 24, 2010 at 2:07 pm
(13) Stuart says:

I am on Tysabri and will be sticking with it for now, as there just isn’t anything comparable at this time. Even with the coming of the MS oral therapies, none show the same positives………..

August 25, 2010 at 12:05 pm
(14) Diana Cagle says:

I have been on Tysabri for over two years and would definitely NOT switch to any of the oral drugs coming available soon. The efficacy rate of Tysabri is double any of the injectibles, and I hear that the oral drugs will be comparable in efficacy to the injectibles. Why would I switch from something that works? So far I’ve had MRIs every 6 months with no new lesions, and have had my strength and stamina steadily increase since I’ve been on it. Tysabri seems to be holding things back quite well for me and I would not change a thing.

August 25, 2010 at 2:32 pm
(15) Lois Klein, R.N., P.H.N. says:

Your title for this pharmacaceutical product, is quite misleading. It would be far better if you spoke to the Judge’s decision on August 24, 2010, to halt federal funding for stem cell research, instead of focusing on yet another possibility that an effective treatment is a “double-edged sword”attack.

There is no drug without untoward side effects.

This repeat of church sourced discrimination regarding the use of products of conception that have no capacity/hope to have a life, to crush hopes for a cure of millions of people suffering from disabling diseases. The closer that stem cell treatment developments advance, the more opposition from those interpreting this deliverance as opposing “God’s will” there is.

Please write your representatives in government to protest the latest travesty in justice.

Show me the proof!

August 25, 2010 at 7:09 pm
(16) Jessica says:

I tried Tysabri after Avonex caused a decrease in liver function after only two months of usage and the Copaxone injections were more painful to me than the spinal headache from the spinal tap or the shattered femur in a car accident. (The company believes I am probably allergic to Copaxone.)

I got two doses of Tysabri, and I didn’t realize there was a difference. Until I missed my third dose and rapidly went downhill. I missed the dose because for almost a month I had had a fever of around 102 and for two weeks a sore throat so bad I could barely swallow. My white blood count was normal, there was no visible signs of a sore throat, and yet I was in pain, and since the fever was intermittent, they’re not really sure why I had the problems. I am going back in for a third dose of Tysabri next month in the hopes that the fever and sore throat were unrelated.

Since being off of it for even a short period of time, my strength has lessened, my balance worsened, and my cognitive disfunction has gone back to where it was before Tysabri and the occasional Solu-Medrol dose. Despite that, I am worried about the fever and sore throat, two symptoms which neither my primary care physician or my neurologist seem to explain. I will go back to my next appointment and hope that the symptoms were an isolated incident, but like Lynn, I have Medicare, so until they approve payment of the new medications, I will either have to stay on the Tysabri, or do without any medication.

All in all, I hope that I can get the benefits of Tysabri without the problems, but given the CRAB medications dramatic failure on my part, if a viable oral medication comes out that my insurance with pay for, I would happily switch. I always said when I was younger that I would rather live to be 50 and enjoy my life than live to be 100 and miserable, but after being told that I am the only one Shared Solutions has heard of with that level of pain from the injections and showing marked decrease in liver function after less than two months’ use, now I’m beginning to rethink that thought. I’m not so certain about it while staring down the barrel of a possibly loaded gun. I love how the Tysabri made me feel, but I’d rather pop a pill every day than sit for a hour or more while they try to find a vein, an hour getting the meds, and then an hour sitting there while my temperature and bp are check. I say bring on the oral medications.

August 27, 2010 at 12:43 am
(17) Anna says:

I love Tysabri and have had 22 infusions. But I am worried about PML. My MS isn’t terrible so after 2 more infusions I will switch to the pills. 60-something cases of PML is getting a bit too much for me. I was comfortable with the 1 in 1000 risk but now it is less than 1000. It’s a shame since the drug is great.

August 28, 2010 at 8:33 am
(18) Rebecca says:

I took Tysabri for 18 months. In the last six months I was on it, I developed not one but four new lesions. My neurologist recommended I discontinue it, as it clearly wasn’t working. So Jake, before you call the author a hack for reporting the news (which makes no sense to me), realize that not every neurologist or situation dictates the use of Tysabri indefinitely.

August 30, 2010 at 5:34 pm
(19) Linda says:

Diagnosed with MS x10 years, originally took Avonex for 6 years then developed antibiotics. Prescribed Copaxone. Changes 2009 with MD anticipating progressive.
I have had 3 Tysabri injections with each better than the first. I am concerned with the PML and question the long term use.
Researched the oral medications and attended MS meetings with number of MD’s report increased number of side effects related to these new drugs.

August 31, 2010 at 12:49 am
(20) Sandi says:

tysabri was the first rx i had tried after having ms for 20+ yrs. i was dx 1/84 and totally paralyzed below the waist by the fall. God intervened 11/9/84, stopped the progression and reversed some damage. i have been mobile w/o aids since ’85. T was the first rx i felt might work. i was on T for 18mo. i didn’t see much if any change… but it costs $74,000 for those 18 mo.

instead – i went to tel aviv 1/15/10 and had my ADULT stem cells taken from my bone marrow. then 7/12/10 i went to athens & had 58 million of my cells intrathecally put in my spine. NO! asc are not a cure – but i believe they have potential. REMEMBER i am NOT talking embryotic stem cells that are not successfully treating anything but causing tumors and grow out of control. if this interests you – go to repair stem cell institute and check out the good reports:)

September 2, 2010 at 8:32 am
(21) Marie says:

Hi Julie. Thanks for all the prodigious research and information you provide to us about MS.

I am entering my fourth year of being on Tysabri. The first two were ok, no relapses but it certainly was not the miracle cure others have reported. There were no dramatic improvements.

But over the past year I have steadily declined. It might be time to come off just because it does not seem to be helping anymore. However I know if I had an opportunity to take an oral med, I would. From what I’ve read though, the side effects of those are no picnic either.

We just can’t win with MS. :(

September 8, 2010 at 3:54 pm
(22) Kim says:

I would be taking Tysabri if I hadn’t lost my job :( I was scheduled for my first infusion and had to cancel. I have heard good things about it, and as far as PLM, I wasn’t worried.

Now I take nothing, I have absolutely NO income, so can’t even pay for a Dr. visit, and even the lower COBRA cost made me laugh. I so wish we had socialized medicine in the US, yes, there are issues with it, but it’s better to be able to get some care when you absolutely need it.

Yes, I have applied for SSDI and Disabled Medicaid (45-60 day waiting period for decision). We shall see.

When I am able, I would prefer the Tysabri to oral meds, I quite liked the infusion suite when I was able to get solu-medrol there :) Best wishes for those that have insurance and/or money!

April 5, 2011 at 9:26 am
(23) regina says:

Call Tysabri about the no insurance issue, they may have alternatives for you. I will be doing this as well, and think I have a better than even chance of getting this paid for. Its lots of sometimes frustrating phone calls.

September 11, 2010 at 3:20 am
(24) Sylvia says:

I have been on Tysabri for over a year now and I can’t say anything negative at this point. It has helped with my balance and fatigue and just having to go once a month is great for my mental stability. I had problems with Copaxon. I am now taking a “core workout” class that lasts 1 1/2 hours which I couold not have taken before because of balance issues and fatigue! If you are considering Tysabri have a long talk with your neurologist and make a decision on your own circumstances — but for me it’s been good! My trainer is a physical therapist and jokingly says “what balance problem?”.

September 13, 2010 at 12:51 pm
(25) Sarah says:

I was on Tysabri for 2.5 years and it was wonderful. I saw a little improvement in mobility but basically my MS stabalized. My MD thought I should come off it due to PML risk. I did so reluctantly and started back on Copaxone which didn’t work in the past. (I also have antibodies to interferon so I can use the others). 3 months later and I now have optic neuritis. So upset and unsure what to do.

October 15, 2010 at 5:33 am
(26) Anna says:

I was in Tysabri for 27mths we all were more frightened about the risk of PML, and had forgotten about the other side affects,I felt more stable and better than I had for yrs on ty but unfortunately that didnt last on my last infusion i has an aspiration attack and realised i was mortal, i was immediately taken off ty and have very little choice of drug to continue therapy i will be trying rebif next mth to see how i go on that, until the oral medication is allowed in Aust, as it has now been approved for use by the FDA overseas and it will take 18-36mth to be available in oz

November 30, 2010 at 4:40 pm
(27) flapkat says:

I’ve been on TY for almost 40 months. My balance has improved, I have not had a fall in over 9 months, and even my cognitive function has “cleared up”. No more noticeable brainfog.
I’m not worried about PML. Yes, it could happen, but I could also be hit by a bus, if I cross busy streets regularly, as one often does. Just living life with MS is stressful and somewhat of a crap shoot, but I feel I would rather take my chances with TY than essentially untried oral meds, or the interferons. I do my research and discuss any changes with my neuro before I act. I feel safe continuing and will do so until and unless my MRI’s change for the worse.

January 8, 2011 at 12:38 pm
(28) S.B. says:

I took Tysabri for 2 years. I went off to take imuran for 6 months. I returned to Tysabri for another 9 months. I don’t know if it did any good, but it was easy and no side effects. I jumped at taking Gilenya. I started a month ago. New Years Eve, I suddenly couldn’t move. After a trip in the ambulance, I was found to have a fever of 103 degrees. 5 days later, after millions of tests it was determined that I had bacterial pneumonia. Gilenya is effective at destroying the compromised immune system. I’m out of the hospital. I don’t think the neurologist will be able to convince to try again. I’m leaning toward Tysabri or nothing.

May 17, 2011 at 11:01 am
(29) JJ says:

My wife has had 44 Tysabri infusions and has had no new lesions and no complications. But we’re going to talk with her neuro at her next appointment about quitting Tysabri since almost all of her RRMS symptoms have disappeared after having the CCSVI venoplasty procedure done 7 months ago.

July 10, 2011 at 1:03 pm
(30) Mari says:

Have been on Tysarbi for 2 years. Have had no active disease since my last MRI in 2009. I am now playing tennis 2-3 days per week. Noticed improvement right away. I have 4 kids and am active with them. My mom have ms as well started Tysarbi 3 years ago and have gone from wheelchair to walking sometimes without her walker. Great drug PML is a very little risk if a get tested for the JVC virus. Mine was negative so I will continue on Tysarbi as long as I can.

July 20, 2011 at 8:27 am
(31) MR says:

Don’t forget the Anti-JCV antibody blood test that is coming to market that should identify patients who are at risk of developing PML from taking Tysabri. That could encourage more people to switch to the therapy after taking the blood test.

January 24, 2012 at 7:00 pm
(32) Sherolyn says:

I’m beginning my second year on tysabri and I’m nervous. My Dr. Doesn’t want to change because I’ve been doing so well on it. However, she says it’s all up to me since I do test negative for JC. I don’t believe I’ll switch therapies.

March 5, 2012 at 10:55 pm
(33) Heidi says:

I just finished my 54th infusion of Tysabri. I have recently had some issues and did a second lumbar puncture to rule out pml. I have had to be off tysabri for a couple months and it was horrible. As I told my dr even if I only had three months left I would keep up the tysabri- it is truly amazing.

March 19, 2012 at 7:47 am
(34) Michelle says:

I was on Avonex for 2 years but during and exacerbation my neurologist took me off of it and I just had my #32 Tysabri infusion last week. I haven’t had any positive changes in my MS progression since the beginning! My neurologist says that my MRI shows lesion reduction & shrinkage, but my symptoms are getting worse, why is that? I walk with a cane now and I haven’t worked in 8 months because of issues with balance, fatigue, cognitive function, spacticity & numbness! I’m in the process of switching neurologists and I want to see what alternative meds might help me more than Tysabri! I’m very frustrated with the whole process, I sat in the hospital infusion center for 5 hours last week, even though I had an appt., others take presidence over my little insignificant infusion!

June 10, 2012 at 11:27 pm
(35) Deanna says:

I have been on Tysabri for 3 years and have tested JCV antibody positive.
I have also tested JCV normal, meaning it is not active. I have 20 brain lesions with a few “black holes.” I am still walking with a walker and see fine, hear fine, think fine, but am very off balance. I don’t want to get off Ty but am worried about PML…any advice besides talk to my doctor. I don’t really have a specific dr anymore.

September 10, 2012 at 7:59 pm
(36) Dr. Lisa says:

Thanks so much for your stories. MS since 1999. Copaxone from ’99 to ’04 and did three MS 150′s, ran 5 miles six days a week fast, and a triathlon. Started DrPH at diagnosis and finished 1st in class. Betaseron for six months In ’04 and Avonex until ’08. Did six more tris (mile swim, 25 mile bike, 6.2 mile run) all und 3.5 hours. 2008 went back to Copaxone after exacerbation. Steroids, more exacerbations. Rebif in ’11 wanting to avoid PML risk. No more running but swimming, stationary bike, yoga, curves. Still working full time for a Navy Hospital. I start Tysabri tomorrow as Rebif worked for year but not now. So hopeful to get balance back and feel better. JC Antibody test helped decision. I so appreciate the sharing! Dr. Lisa

October 15, 2012 at 2:21 pm
(37) Ted17 says:

I just got diagnosed with ms after 7yrs of gjoin doc to doc, I really hope ty works for me and others! I’m goin downhill fast, its hard to c people that knew me b4, cause I’m embarrassed that I’m not the same and just walking is a challenge! PML kinda worries me, but I’ll take the risk. I really think stem cell re is the answer to ms and so many other things. But my opinion is nothing. Thanks Ted!

November 19, 2012 at 11:50 pm
(38) Krystal says:

I feel your pain Ted! It is an embarrassing disease…look at me and until I step out with my cane you would never guess and then it’s wtf? I was riding off road motorcycle til fall ’09… now I have can hardly lift my right leg, legally blind, bladder/bowel issues, balance…did I say wtf? :D And still I smile DAMNED if this disease will take that. Trying to get approved for the $ help with Tysabri…

November 28, 2012 at 5:07 pm
(39) Laura says:

When I started tysabri 9 months ago I was frightened from PML but my doctor tests me every 3 months for JC virus. I feel great on Tysabri. Nit enables me to participate in life instead of sleep 20 hours a day. My back pain even dissipates immediately after an infusion. For three weeks I feel great, then my body needs tysabri by the fourth week. I will not be jumping into a therapy any time soon. Happy with the treatment.

December 1, 2012 at 1:41 am
(40) Jenn says:

I will be going to my sixth infusion in a couple of days. After the very first infusion I started having a lot of side affects. Eventually I looked up the side affects and probably have just about all if them.
Irregular 5 week long menstral cycle, headaches, muscle pain, vaginal pain, depression, no motivation at all, weight gain and the list goes on….
I was thinking about stopping and now I’m really scared after reading all this stuff

December 26, 2012 at 9:25 pm
(41) Barb says:

I have been on Tysabri for 6 years. I just recently had a positive JC virus test. I am relunctant to stop the Tysabri as it has been the only drug to control my MS. Any feedback?

January 9, 2013 at 7:20 am
(42) es says:

The 27th of December was my 14th Tysabri infusion. I was told the beginning of December by my neurologist that I am now testing positive for the JC virus. It scares me and I can’t decide whether to continue or not. I know that the percentage of getting PML is small but when you test positive for the JCv it seems that the % feels much bigger. :(

February 10, 2013 at 11:06 pm
(43) joe says:

I started on the ABC injections, but I had several flareups. I switched to tysabri approx 5yrs ago and had approx 2 flareups. I can still drive my van from a wheelchair. I’m mobile,I’m happy, I’m staying on tysabri.

March 31, 2013 at 8:33 pm
(44) bmagrath says:

I have had tysabri for six years. I am now having new symptom. Speech problems,balance and cognitive. My doctor says it is not the tysabri but think it is. Why haven’t they studied it with people who have been taking for more than 2 years?
I am scared to keep taking it

January 2, 2014 at 11:03 am
(45) Sandy says:

I’ve been on Tysabri for a little over 7 years. Previously on Copaxone but after a bad relase my neuro switched me to Tysabri. It’s been wonderful! No cane,working full time. Symptoms pop up here and there when I get tired or hot. They are nothing compared to that relapse!

March 14, 2014 at 6:42 am
(46) Lorna McIndoe says:

I have been on Tysabri for nearly 6yrs. It has been a blessing for me, I was not positive for the JC virus until two yrs ago, now my scoring for risk of PML is down to 1 in every 115 people. I feel the risk is too high now for me to stay on Tysabri, I am terrified to leave my infusions behind and pray I do not go back to my pre tysabri state, as I am on my own with my 12yr old., I fundraise for MS alot and motor neurone disease as they run in my family and love my charity work, God willing I Continue to do this….all the best to everyone on their Tysabri journeys xx

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