Immune Reconstitution; The Rebound Effect of Tysabri

I have not written here in a very long time (or so it feels) and have hardly written on my personal blog very much except out of a feeling of obligation. Why is this? I have been “ill”… MS ill… You could say I am relapsing but if you want to get technical I am experiencing “immune reconstitution” or what is a little more commonly known as the Tysabri rebound effect.

What is immune reconstitution? When you are on a drug (such as Tysabri) that suppresses or modulates your immune system and you have been on it long enough to prevent your immune system from doing what it wants to do (attack itself in the case of Multiple Sclerosis) and you suddenly stop? This starts the process of immune reconstitution; the immune system trying to return to it’s previous state of reeking havoc on the body. With Tysabri, this generally happens about 3 to 4 months after not having a dose and is sometimes called a rebound, rebounding or the rebound effect. It generally affects those who have done really well on Tysabri. There are some statistics out there but I can’t remember them and I can’t see well enough to surf the web and find them at the moment. So anyways, here is the catch; the immune system does not just return to its pre-Tysabri state but instead it becomes more “aggressive”. I have read that it becomes as much as three times more aggressive and you’re likely to develop three times the amount of lesions on an MRI. I am not sure what the actual numbers are as a lot of doctors do not even think it’s an actual thing but I can assure you; the rebound effect is very real. I have spoken to many other patients who have stopped Tysabri and 3 to 4 months later they tanked. I have also spoken to doctors who have reported seeing the same effects in their patients who stopped. Anyone who says it’s not an actual thing needs to go back to school haha.

So if you have been following me you know I stopped Tysabri when I was in Colorado because I was experiencing a few symptoms that were not ordinary for me that were similar to the early symptoms of PML (Progressive Multifocal Leukoencephalopathy) a rare and sometimes fatal brain infection that Tysabri can cause in patients who are JC positive like myself. I asked for MRIs and an LP to check but none of my doctors shared my concern, which is why I moved back to California; my neurologist here is extra careful and can you really be too careful when you are ensuring that you are not dying? I’m not. No PML but because I was off of Tysabri for a little over three months I started to fall apart.

It’s been a couple of months since it got really bad. The left side of my body is weak and it’s hard to produce rapidly repeating movements with my hand like washing your hands, my right hand can move back and forward fast enough to start a fire but my left hand feels limp. This is one reason I have not been writing. It’s been so hard to type without hitting all the wrong keys! My vision has been all over the place; first it was just blurry, then blurry and doubled, then I had some oscillopsia, then I got really dizzy which is not a visual symptom but it may as well be. I was nauseous and even slowly moving my head made the world look like it was speeding around; like when you’re speeding down the freeway and you look straight out the window at the dashes of white paint on the road. It is almost a blur. The nausea went away but I still can’t see unless I am sitting and staring at the computer screen. Still. Kind of goes without saying but my balance is off. I have never fallen so much in my life. I went from walking on my own, to walking with a cane, to needing a wheelchair, back to using a cane, and now I am trying to not use a cane but I really should be using one. I lost my sense of taste for a while and I have been battling the worst insomnia I have ever had.

Solu Medrol, Solu Cortef, IVIG, and still nothing. I am trying to be patient but it’s getting really difficult. I had an LP (lumbar puncture) and a couple MRIs. Everything looks normal on my LP and my MRI is lit up with some new lesions (which I expected- all of which explain my symptoms; huge lesion in the cerebellum which explains my dizziness.

This rebound nonsense has been miserable and every morning I find myself waking up and slowly opening my eyes in hope that I will be able to see the time on my clock. Nope… Yes, it is miserable, and part of me wishes I just risked it and stayed on Tysabri, stayed in Colorado, but part of me is glad I played it safe. Now I know I have no signs of PML, I personally know that the rebound effect is something I really have to consider in the future, and I plan on going back to school for Occupational therapy; all things that would not have come to be if I had just risked it and stayed in Colorado. I plan to move back when I am better prepared financially and medically.

Have you experienced the rebound effect of Tysabri?

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Comments

View Comments (28)
  • toddgarfeild
    2 days ago

    the confusion is great, I want to be clear that I am a care giver to an MS patient (wife). she has had symptoms for nearly 15 years but only formally diagnosed in 2012. her neurologist believes that she was an undiagnosed pediatric case.

    let me be clear here her first real flare occurred in 2005 after taking a partial prescription of a fluoroquinolone. by her own accounting though her 1st flare was around the age of 13 that began as a GI infection that was nearly impossible to get rid of. do note there seems to be a connection with all the auto immune disease spectrums and a deep infection of the GI tract.

    In 2012 after being formally diagnosed, her only symptoms were mild dizziness and mild balance issues all on the left side of the body. she was going to school, walking, shopping, living. Her doctor talked her into her very 1st ever treatment for this newly diagnosed MS 3 days of steorids 1gram/day…probably sounds familiar to a lot of you. she did not tolerate the treatment very well, but completed it.. over the next 3-5 weeks she went down hill quickly. she went from walking 100% unaided to needing a cane. that’s when red flags went up for me that this MS “thing”. btw her neurologist called MS a syndrome. that this MS was being caused by an active pathogen that is still in the body and that when the steroids were given and the immune system temporarily shut down it allowed for the pathogen to get a stronger foot hold. in april 2018 her neurologist talked her into using tysabri. she has only taken 5 infusions on infusion # 4 and 5 she began suffering from sever insomnia lasting 5-8 days which cascaded into full blown mania hallucinations etc etc.. In October we discontinued the treatment.,

    in my opinion something doesn’t feel right with this class of drug. the drug I call the “mabs” to this day I question why 100’s of billions of dollars are spent on therapies to treat the symptoms of MS. why not billions on a cure? why are we allowing a market based health care system dictate your quality of life?

    Have any of you all ever asked your neurologist how when testing these MS drugs they find 1000’s of mice with MS? they don’t, they take a perfectly healthy mouse and give it MS…hmmmm consider that please.

    **for myself I am now 19 years post trial for the 1st MAB, infliximab both in trial setting and later after FDA approval. these drugs don’t work, but I have moved on now with a novel form of leukemia and symptoms that can be every auto immune disease under the sun.

    if no one has noticed auto immune disease is at epidemic levels in the USA..and yet we the greatest nation on earth have the most un healthy population of the developed nations. could it be a for profit system that perpetuates our illness? when in fact they know a combination of antibiotics, antivirals or antifungals costing 10 dollars will cure us?

  • dvtrv
    3 weeks ago

    Hey there.

    Have MS rrms diagnosis since jan 2011 n on Tysabri since March 11, 70+ infusions.
    Had LP 7th Novthis year.
    Last infusion was Sept 11th this year.
    My legs r, whatever they r, hard to explain but they r.
    LP results to b looked tomorrow then a couple more weeks till I get new meds.
    I do feel as though my body is or wants to head back to 2011.
    I’ll just hav to wait near.
    Very interesting reading Mr Allen

  • only1Patient
    4 years ago

    After I had been on tysabri for two years my new neurologist thought I should stop it for a year. I did that, she left her business, & by the time I found a new neuro near Boston, I had dramatically lost ground. When I had a new brain MRI that didn’t indicate new lesions & the test for PML was negative, he suggested that I go back on tysabri. He suggested that the suggestion to stop tysabri after a set period of time is a bit of overkill if a patient doesn’t have active lesions & is negative for PML. His opinion is that I can keep taking it until my situation changes or a better drug is available. He is with the MS Center @ Brigham/Women’s in Boston. Even though it’s a long trip to go there monthly, taking tysabri monthly is such a definite positive & I intend to continue taking it.
    When I went off tysabri for a year & started to lose ground, I definitely got depressed.

  • lcal
    4 months ago

    Hi Chop
    I thought I would take a chance that you are still on her and will see this
    I to go to BWH MS CeNter and yes it is quite a drive if you would like to pm me I’m wondering if by chance we live close (who knows, right). My email is. Just4mom@me.com
    Thanks
    Lisa

  • Matt Allen G author
    4 years ago

    Wow…. Took you off for no reason, that is pretty irresponsible if you ask me. Glad you are back on!

  • Telissa
    4 years ago

    The only way off Tysabri is with Lemtrada. I had Lemtrada in December after being late with a tysabri infusion…my ignorance costed me approx. 70 new lesions.
    Lemtrada is great anyway. I have so much more freedom and less up and downs. I hope that helps those of you that would wish to come off tysabri. I was scheduled to come off in March to Lemtrada anyway. I had no idea about the rebound effect, even though I am sure I was probably warned about it. I have a terrible memory. Anyway…the results from the studies show that it is the only sure way to come off tysabri with no rebound effects and it is shown to heal old lesions. I am walking without a walker or anything once again. Yay!

  • Matt Allen G author
    4 years ago

    Lemtrada, it’s not a sure fire way to avoid a rebound. There are mixed results and I hear more often than not it doesn’t help those who would have had a rebound anyways, only those who may not have had one in the first place as it does not effect everyone. I was REALLY hoping Lemtrada would have better results with the rebound thing but from what I have heard/seen from patients, reading articles online, and talking to neurologist; it’s really no better than most other drugs…. ugh…

  • Rachel
    4 years ago

    I can’t thank you enough for posting this. I stopped taking Tysabri last January. Deciding to begin Tysabri, knowing I had PML, and the risk that came with it was a big step. I had 2 little guys I wanted to be a Mommy to. I wanted to see if maybe it would give me a chance to not have to watch from a recliner,the wheelchair,or sidelines. They needed me, they were only 7 and 5. Most of the time it was great. Of course, I still had to be smart, but I got to be their Mom. I didn’t have to watch someone else take care of my babies.
    The 2 year mark came. The risk goes up. I was willing to take the risk before. They are older now, they can help more. I am selfish now. I am not ready to take that risk anymore. I want to watch them grow up. So I sadly made the decision to get off of Tysabri. I regret it. I am worse than I was before. I guess I am where I knew I was headed when we were making the decision to begin. My rebound effect took longer than that, but once it hit, I was walking with my walker, and collapsed. Never to be strong again.
    Luckily I already had a wheelchair in place. It is a pretty sweet hot pink wheelchair that I blinged out. I refused to get the motorized one just yet. I want to be as independent as possible. Plus this one cost so much, and I am getting completely jacked around with this one (with insurance and our out of pocket we are on about 4000.00.) but whatever, who needs money anyway. It frustrated people that I didn’t get a motorized one. Again whatever. There will be a time for that too.
    My doctor has me on Gilenya, and now she has decided that I should just go to Barnes in St. Louis. Again, who needs money anyway. I am glad I will get another set of eyes on my MRI’s.
    I was diagnosed in 2001. I haven’t joined any groups before because I wasn’t going to let MS have any extra part of my life. Well as I sit in my recliner all day now, wondering how long I can wait before I have to get up and let the dog out and go to the bathroom myself because that is a monumental task *oh I hope other people have the same issue* I have found that I long for other people like me in the world just to say that I am normal in a community. Matt, you will never know how much I needed this! Thanks!

  • Matt Allen G author
    4 years ago

    I am too young and stubborn to be anywhere near ready for a motorized wheelchair. If my arms work than I will use them as long as they do. Luckily I have been out of a chair for a while thanks to Tysabri but the thought of going back… It’s depressing… Like I have simply been on borrowed time…

  • Peter
    4 years ago

    One other thought: Neuros have no clue or, in my opinion, interest, in the cognitive and emotional symptoms of MS. Focusing on the physical is the easy, lazy way to go. This disease, in my opinion, has more cognitive and emotional symptoms than physical ones.

    Go get a Neuropsych test. It has given me by far the most insight into how MS impacts me. Get a baseline and then get comparative tests every five years or so.

    There is all this scrutiny lately on the impact of head trauma on cognition and emotion. Why don’t they address that in MS? I don’t need to see a neuro to confirm I can walk in a straight line, touch my nose or feel sensation on the bottom of my foot. I do need a neuro to help me decipher why I cry at the drop of a hat, especially when im touched by something or I feel the emotion of pride. Or why I’m clinically bipolar when I never used to be, cycling through states of intense euphoria followed by dark depression.

  • Matt Allen G author
    4 years ago

    Agreed, when the ONLY time you hear about MS on TV (an NOT in a fictional TV show) is the commercial for Pseudobulbar affect (PBA) then that tells you something. But football related head injuries? POLITICAL PRESSURE. There is none with MS so you won’t see those same results… :/

  • Peter
    4 years ago

    Thanks for sharing. I’ve been thriving on Ty since 2007. A recent job change required a change in my Ty prescribing neuro. Two said they wouldn’t prescribe it due to their risk tolerance. They’d rather take the more likely risk that I end up in a wheelchair than the minimal risk, even with my high titers, that I’d get PML. While they also re-diagnosed me with MS, they told me my most prominent, but still mild symptom, tremors in my hands exacerbated by heat, was NOT MS.

    Total BS. It’s my choice. Before the job change, I often rode my road bike 35 miles over a mountain at a near pro cyclist level to get to work. So I went to one of the top young neuros in the area, and she agreed with me. She hooked me up with a neuro closer to me than she is and promised he’ll continue to prescribe Ty (which I’ve been able to take still while in limbo). I meet with him in a few weeks. I hope to be hammering hard up hills on my bike for a lifetime.

    Thank you for sharing. I’ve heard of the rebound effect. I didn’t know it was that bad. It’s further motivation to stay on Ty, not that I needed any.

  • Matt Allen G author
    4 years ago

    Wow. Doctors…. How long have you been off?

  • Angela
    4 years ago

    Having been on Tysabri for 8 years now, this is something that I’ve come to dread, and one of the reasons I’m staying on Tysabri despite having antibodies (very low titer levels, though) for JCV. I’ve done remarkably well on Tysabri and I believe that it, and my lifestyle changes, have helped to keep disease progression at bay. For me, this is still the platinum-level treatment, particularly since I only have to think about treatment once every 4 weeks, rather than daily, twice daily, weekly, or thrice weekly.

    Like the author of this piece, though, I am contemplating a return to school for certification that can help me to work with those in the MS community–and other communities–who need assistance making the most out of life.

  • Matt Allen G author
    4 years ago

    Tysabri was a “God-send” for me. I just worry about PML a bit because I am JC positive and my titer is high so…. Yeah haha…..

  • Sue
    4 years ago

    What to do? No one knows! In the old days, I’ve been taking Tysabri since the beginning. I was told to stop after 2 years. Then I got worse. I went back. Then a new drug came out, so I went off to clean my system. 3 weeks on Gilenya and I got pneumonia. Back to Tysabri. Then a new doctor. Off again. Back again with a new doctor. No one ever said going back and forth was bad. Over the years it has progressed. Because of “Tysabri vacations” or because I have progressive m s.? I would throw my hands up, if only I could.

  • Matt Allen G author
    4 years ago

    wow. PRIME example. I hate this. Its like we are stuck on something and to get off means going through hell and hoping hell will end…

  • Maryann
    4 years ago

    I was diagnosed a year ago and started Tysabri about 6 months ago. My insurance changed and I had to be off of Tysabri for 12 days until I got approved. Those 12 days I experienced multiple symptoms of MS. I only ever had one symptom before getting on this medicine. I really didn’t know if I was going through withdrawal or actually having symptoms. As soon as I was approved, I went back on it and that day felt better. Thanks for sharing your story. After reading this, I am extremely nervous for the day my doctor wants me to stop taking this.

  • Matt Allen G author
    4 years ago

    Wow, I have never heard of such quick reactions! hopefully when that day comes there will be a medication that you can switch to that also avoids the rebound,

  • NRD
    4 years ago

    Thanks for the blog post. I have been off Tysabri for about 6 months. (JC +). I have not heard of this rebound effect before. I have gotten so much worse. My neuro must not believe it. He has never mentioned it with all my complaints. Thanks again for sharing your story.

  • Matt Allen G author
    4 years ago

    I think it’s most often a matter of being uneducated on it and rather than admitting “they don’t know” it sounds better to say “It’s not real”

  • Corsica
    4 years ago

    Hi Matt,
    I came across your blog post which was shared by a page I follow on facebook. I’m 26 and just diagnosed in late January with RRMS. My Neuro recommended Ty, and after receiving my negative JC results I signed the paperwork last week. Now after seeing your post, I’m having second thoughts.
    I’ve obviously not been on any DMD’s yet, and my diagnosing symptom was optic neuritis. I did have a relapse (unbeknownst to me at the time) about two years ago where I suffered sluggishness and Uncoordination in my left arm and leg. I’ve also had major lasting memory issues for the past few years that I chalked up to the stress of being a new mom.
    Anyway, I was not told about this immune reconstitution or the possibility of symptoms worsening after stopping Ty. Was Ty your first DMD? What were your symptoms like before you started? I’m worried that now my symptoms are minor (memory issues, fatigue and my ON eye is still not 100% two months later) if I start Ty and then have to get off for whatever reason, I’ll have a severe relapse and be way worse off. If this is the case I’d rather go with a different treatment.
    Thanks for reading my novel and if you or anyone has a chance to reply it’d be greatly appreciated!!

  • 27orange
    4 years ago

    I was diagnosed about 7 years ago and started on Avonex. I had a relapse about 2 years ago; that and MRI results led my doctor to recommend Tysabri. I was nervous about it, mostly because I thought of Tysabri as the “when all else fails,” last-resort drug. But it’s proving so effective that I don’t think doctors look at it that way anymore. I have had no new symptoms and am happy to continue with Ty as long as I’m JC-negative, will reassess if that changes.

  • Matt Allen G author
    4 years ago

    They want to use it as you first treatment? Usually it’s a “when all else fails” treatment. The thing is, if it doesn’t really help you than you are less likely to experiance a “rebound” but me personally? I would probably start with something different, that’s not professional medical advice, just advice based on my own experience. I just find it odd that they want Tysabri to be your first when usually people don’t start it until they have tried many other DMDs with no success. Keyword USUALLY.

  • Tommy Owen
    4 years ago

    Hello, my name is Tommy, and my wife to be, Sheena, has been getting the Tysabri infusions for a long time. She was recently laid off from her job and lost her insurance benefits. I asked her so many times to go to the Healthcare Marketplace and get coverage! God bless her, she is so forgetful, understandably. The point to all of this is, she has missed her infusion for two straight months now. After reading your post I am extremely concerned. I have noticed a major increase, or decrease rather, in her balance and vision. She keeps walking into things and bumping her head. She is covered with bruises on her arms and legs. She is very stubborn about excepting help and advice. What can I do? I love her more than anything in the world and wish I could take her place. Gold help us! Thank you for sharing.

  • Matt Allen G author
    4 years ago

    She NEEDS to get back on Tysabri some how, sounds like it will only be getting worse at which point she will need help doing ANYTHING/EVERYTHING and no one likes that, especially us stubborn people haha.

  • Kim Dolce moderator
    4 years ago

    Hi Matt!

    I’m relieved to learn that you do not have PML as you had feared, surely that’s a load off your mind.

    I stopped Tysabri in preparation for gallbladder surgery several years ago and decided not to go back to it. Three months later, I had what was probably a flare and immediately went on oral prednisone. The flare was stopped in its tracks and I went back to baseline. I think it was a Tysabri rebound flare but my neuro isn’t convinced.

    I hope your symptoms stabilize soon and you can get some relief 🙂

    Kim

  • Matt Allen G author
    4 years ago

    It WAS a relief and as I mentioned, many doctor’s don’t believe in it despite the overwhelming evidence that it’s real, much like the debate over global warming haha

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