Sorry I posted this first in the "Tysabri" sub section but I think it fits better in the general "Medicaton & Treatment" section! Sorry for double posting.
Hello,
I am new to this forum. I am 28 years old, female, my MS was diagnosed 9 years ago. My first relapse was numbness/sensatory problems in both legs, it recovered. The first five years I had rebif and avonex and in that period I had one relapse with balance problems, I fully recovered.
In the past 4 years I took tecfidera. First two years there were no relapses and no new MRI activity. After a heavy coughing infection I got one light relapse in 2017 with one new 3mm lesione.
But this year I suddenly had two relapses, stiffness in my leg and a few weeks later in my hand. It was quite scary because I was almost unable to use the hand for around two weeks. Both fully recovered with prednisolone influsions.
Now the doctors say I should go on Tysabri as my JCV is negative. But the weird thing is, my new MRIs both spinal and brain do not show any new lesions and no activitiy. The brain MRI shows no new lesions since last year. In the year before I had that one 3mm lesione that I mentioned above.
In the spine, they didn't even see anything new since 2009! I dont really get it as my relapses were relatively strong at least from what I had experienced before.
I also have to say that this year I had the most stressful period of my life because I am in the finishing period of my PhD. But this will be over in a few weeks.
Do you think I should start Tysabri now or have another MRI in a few months and see if I stabilize once the stress is over?
I am JCV negative, so the PML would not be an issue. However, due to my job I was always spending longer periods abroad working in different institutes (sometimes three months, sometimes a year). With Tecfidera I could always take it with me but Tysabri I have to get here, I guess (Germany). I know it is available in many countries, but I think my insurance wouldn't cover it abroad.
Of course, health is more important, and I am willing to change my lifestyle eben though I loved longer stays abroad. But as I understood, shorter travels up to 4 weeks will still be possible, right?
I am now feeling completely free of symptoms, I excercise, take Vit D and my tecfidera. But of course, the relapses earlier this year worried me. On the other hand, the MRI was quiet and the very specific dissertation-related stress will be over soon.
I find that such a difficult decision to make. I am worried about the rebound. Once I stop Tysabri I will have to go on a (probably stronger) medication immediately as far as I understood.
Me and my partner also want to have children in the coming years. My neuro said Tydabri would not be a bad option then since there is a lot of experience on tysabri patients + pregnancy.
Difficult decision Maybe someone can give me some ideas about what you think.
Thank you!
Hello,
I am new to this forum. I am 28 years old, female, my MS was diagnosed 9 years ago. My first relapse was numbness/sensatory problems in both legs, it recovered. The first five years I had rebif and avonex and in that period I had one relapse with balance problems, I fully recovered.
In the past 4 years I took tecfidera. First two years there were no relapses and no new MRI activity. After a heavy coughing infection I got one light relapse in 2017 with one new 3mm lesione.
But this year I suddenly had two relapses, stiffness in my leg and a few weeks later in my hand. It was quite scary because I was almost unable to use the hand for around two weeks. Both fully recovered with prednisolone influsions.
Now the doctors say I should go on Tysabri as my JCV is negative. But the weird thing is, my new MRIs both spinal and brain do not show any new lesions and no activitiy. The brain MRI shows no new lesions since last year. In the year before I had that one 3mm lesione that I mentioned above.
In the spine, they didn't even see anything new since 2009! I dont really get it as my relapses were relatively strong at least from what I had experienced before.
I also have to say that this year I had the most stressful period of my life because I am in the finishing period of my PhD. But this will be over in a few weeks.
Do you think I should start Tysabri now or have another MRI in a few months and see if I stabilize once the stress is over?
I am JCV negative, so the PML would not be an issue. However, due to my job I was always spending longer periods abroad working in different institutes (sometimes three months, sometimes a year). With Tecfidera I could always take it with me but Tysabri I have to get here, I guess (Germany). I know it is available in many countries, but I think my insurance wouldn't cover it abroad.
Of course, health is more important, and I am willing to change my lifestyle eben though I loved longer stays abroad. But as I understood, shorter travels up to 4 weeks will still be possible, right?
I am now feeling completely free of symptoms, I excercise, take Vit D and my tecfidera. But of course, the relapses earlier this year worried me. On the other hand, the MRI was quiet and the very specific dissertation-related stress will be over soon.
I find that such a difficult decision to make. I am worried about the rebound. Once I stop Tysabri I will have to go on a (probably stronger) medication immediately as far as I understood.
Me and my partner also want to have children in the coming years. My neuro said Tydabri would not be a bad option then since there is a lot of experience on tysabri patients + pregnancy.
Difficult decision Maybe someone can give me some ideas about what you think.
Thank you!
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