Tysabri rebound right now
I started Tysabri five years ago in November. I had been dx as RRMS in 2005 after a year of struggling to get a diagnosis.
I tried Copaxone for a few years, then Rebif, and then Tysabri. I continued to have relapses and side effect issues with C and R.
Once I was on Tysabri for a few months, I had no more relapses. I felt very good for a person with MS and continued working full-time as a teacher and treating symptoms with Baclofen and Provigil.
In September of this year I tested JC+ and decided to go off Tysabri because I had been on it for almost 5 years and I was having other health issues. My neuro argued with me that I should stay on it even though I potentially had all of the risk factors for PML (I was unsure at that time of what else was going on with me medically as it could potentially have been cancer). I insisted I wasn't willing to gamble my life so he no longer wanted me as a patient.
My last infusion was September 6th.
I saw a new neurologist on October 24 and filled out the paperwork to start Tecfidera. Tecfidera was my top choice because I just learned in mid-October that I was dealing with nonalcholic steatohepatitis with cirrhosis and that my liver was failing and I would eventually need a transplant.
Since the end of October I have been having a worsening of symptoms that started with weakness in my legs, dizziness, uncoordination, and balance issues. I did a 3 day course of high-dose oral steroids (Prednisone 20 pills of 50 mg = 1000 mg a day for 3 days.) Nov. 6-8.
Since that time I have continued to get worse and grow weaker. This culminated in me going from walking completely unassisted and exercising 2 hours a day to using a cane, then a walker. This past week I have been experiencing severe weakness in both arms, hands, and in my torso. I was admitted to the hospital the night before Thanksgiving and was released on Saturday afternoon.
I am debilitated in almost every way at the moment. It is difficult for me to stay sitting upright unassisted, my arms and legs are all very weak and I can barely walk with the walker. My legs are completely spastic and my arms are twitching, numb, and burning at the same time. I am having a great deal of pain in my joints.
The neurologists at the hospital did new brain MRIs to compare to my previous set done in early October. There was no change on the MRI with lesion load and nothing was enhancing. They did not do repeat MRIs of my spine, although I have had one lesion at C3-4 since 2005.
They have decided that this was the Tysabri rebound effect. I am not considered by them to be in a relapse because there's nothing going on that is new in the MRIs. I am home now and barely able to get around but I am resting a lot. I have lost ten pounds in less than one week, despite the fact that I am eating regularly.
The steroids did nothing earlier because this isn't a relapse. There is nothing they can do for me medically at the moment. They have referred me to have in-home PT and I am hoping to be evaluated for that on Tuesday.
I did start Tecfidera today and have dealt with the facial flushing and burning up feeling with both doses. I did eat before the second dose and that seemed to make the flushing start later but it lasted longer with the second dose. It is what it is at this point.
I have not been able to drive for several weeks now and I live alone with almost no family support. I am happily single at 43 (after getting divorced in 2000) , I have no significant other, no kids, and my friends have been trying to bring me to my medical appointments which are all at least 45 minutes to an hour and a half away.
I have been unable to work since September 20 and am now out on a paid medical leave until Jan. 2. I have an appointment to be evaluated for several on-going health issues at the Mayo Clinic in Rochester, MN starting on Jan. 20.
I have no idea how much Tysabri has played into my liver damage because my numbers have been up and down for several years now and no one thought it was a big deal.
I'm not trying to scare anyone into stopping Tysabri or frighten anyone away from starting Tysabri. I just simply wanted to post my situation in case it is helpful for anyone else. I'll be honest and say that no one had ever even mentioned the rebound effect to me before my hospitalization. I am aware now that not everyone deals with it but I am and it's not pretty.
I have no idea how long this rebound effect will last or how much I may be affected long term. I'm staying as positive as I can, reserving my strength for what's absolutely needed, and trying to maintain adequate nutrition.
I am concerned with Tecfidera just because it's new and no one knows the long term side effects. Even this rebound effect of Tysabri isn't mentioned often to many people, from what I can find on web searches. Most of the research on that has been done in Europe and with very small populations. I'm also concerned because Tecfidera is made by Biogen which makes Tysabri. If they're not being open about some of these effects of Tysabri what else is big pharma not telling me?
It's all food for thought.
Good luck with your Tysabri journey, wherever you may be in it,
J
I tried Copaxone for a few years, then Rebif, and then Tysabri. I continued to have relapses and side effect issues with C and R.
Once I was on Tysabri for a few months, I had no more relapses. I felt very good for a person with MS and continued working full-time as a teacher and treating symptoms with Baclofen and Provigil.
In September of this year I tested JC+ and decided to go off Tysabri because I had been on it for almost 5 years and I was having other health issues. My neuro argued with me that I should stay on it even though I potentially had all of the risk factors for PML (I was unsure at that time of what else was going on with me medically as it could potentially have been cancer). I insisted I wasn't willing to gamble my life so he no longer wanted me as a patient.
My last infusion was September 6th.
I saw a new neurologist on October 24 and filled out the paperwork to start Tecfidera. Tecfidera was my top choice because I just learned in mid-October that I was dealing with nonalcholic steatohepatitis with cirrhosis and that my liver was failing and I would eventually need a transplant.
Since the end of October I have been having a worsening of symptoms that started with weakness in my legs, dizziness, uncoordination, and balance issues. I did a 3 day course of high-dose oral steroids (Prednisone 20 pills of 50 mg = 1000 mg a day for 3 days.) Nov. 6-8.
Since that time I have continued to get worse and grow weaker. This culminated in me going from walking completely unassisted and exercising 2 hours a day to using a cane, then a walker. This past week I have been experiencing severe weakness in both arms, hands, and in my torso. I was admitted to the hospital the night before Thanksgiving and was released on Saturday afternoon.
I am debilitated in almost every way at the moment. It is difficult for me to stay sitting upright unassisted, my arms and legs are all very weak and I can barely walk with the walker. My legs are completely spastic and my arms are twitching, numb, and burning at the same time. I am having a great deal of pain in my joints.
The neurologists at the hospital did new brain MRIs to compare to my previous set done in early October. There was no change on the MRI with lesion load and nothing was enhancing. They did not do repeat MRIs of my spine, although I have had one lesion at C3-4 since 2005.
They have decided that this was the Tysabri rebound effect. I am not considered by them to be in a relapse because there's nothing going on that is new in the MRIs. I am home now and barely able to get around but I am resting a lot. I have lost ten pounds in less than one week, despite the fact that I am eating regularly.
The steroids did nothing earlier because this isn't a relapse. There is nothing they can do for me medically at the moment. They have referred me to have in-home PT and I am hoping to be evaluated for that on Tuesday.
I did start Tecfidera today and have dealt with the facial flushing and burning up feeling with both doses. I did eat before the second dose and that seemed to make the flushing start later but it lasted longer with the second dose. It is what it is at this point.
I have not been able to drive for several weeks now and I live alone with almost no family support. I am happily single at 43 (after getting divorced in 2000) , I have no significant other, no kids, and my friends have been trying to bring me to my medical appointments which are all at least 45 minutes to an hour and a half away.
I have been unable to work since September 20 and am now out on a paid medical leave until Jan. 2. I have an appointment to be evaluated for several on-going health issues at the Mayo Clinic in Rochester, MN starting on Jan. 20.
I have no idea how much Tysabri has played into my liver damage because my numbers have been up and down for several years now and no one thought it was a big deal.
I'm not trying to scare anyone into stopping Tysabri or frighten anyone away from starting Tysabri. I just simply wanted to post my situation in case it is helpful for anyone else. I'll be honest and say that no one had ever even mentioned the rebound effect to me before my hospitalization. I am aware now that not everyone deals with it but I am and it's not pretty.
I have no idea how long this rebound effect will last or how much I may be affected long term. I'm staying as positive as I can, reserving my strength for what's absolutely needed, and trying to maintain adequate nutrition.
I am concerned with Tecfidera just because it's new and no one knows the long term side effects. Even this rebound effect of Tysabri isn't mentioned often to many people, from what I can find on web searches. Most of the research on that has been done in Europe and with very small populations. I'm also concerned because Tecfidera is made by Biogen which makes Tysabri. If they're not being open about some of these effects of Tysabri what else is big pharma not telling me?
It's all food for thought.
Good luck with your Tysabri journey, wherever you may be in it,
J
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