Tysabri ms relapse

Common Questions and Answers about Tysabri ms relapse

tysabri

However, I will try to provide you with some information regarding rituximab in MS. I will say though that as you know, the goal of therapies for MS is to prevent relapses and accumulation of lesions in the brain and spine. While being off medications for a few weeks or even months is probably not detrimental, in the long term, it is optimal for patients who can tolerate the side effects of MS medications to be on them.
I have not done a whole lot of research on Tysabri, although I did enough to know that if my MS continues to be quite active, I would rather try it than Noavantrone, which seems to be my neuro's preference. The cardiotoxicity of Novantrone is scary to me, not that Tysabri is without its serious side effects, as you point out. You are definitely not being silly to have such concerns. For now I am holding steady since going on Copaxone three months ago.
I think Tysabri has helped to slow down her MS, and if you ask my sister whether or not Tysabri has made a difference, she would most certainly say it had. For those of us with MS that have a more aggressive disease course, it's nice to still have an option available for us. My sister is monitored closely for PML, and if she's having an infection that isn't being controlled with antibiotics, her doctor has her hold off on that month's Tysabri infusion.
You've reached a great site with lots of info and plenty of experience from MS sufferers. I am currently using Tysabri and and had dose 16, 2 days ago. There was confusion about my JC status for a while because of the number of false negatives associated with the test, however, unfortunately that isn't the same with positive results. If you test positive you will always remain postive.
I hope I answered your question, feel free to ping me if you have any more. I'm also in the MS community forum, and you can search Tysabri in the search field in that forum. We've had a ton of discussions on the drug. :) Hope you feel better soon!
Most know my unhappy experiences with Tysabri recently but DH drug me home from the ER early this morning. Had been nauseous and upchucking since Monday after my August Ty infusion 10 days ago. Nice doc, ran tons of labs (only WBC was elevated) and x-rays and wonderful meds and hydration fluids. He and I both feel was Tysabri side effect.........now the interesting part is that I seriously burned my esophagus and now have days of liquids and meds while it heals.
A recent study showed that people who go off Tysabri will most probably experience a serious relapse in their MS.
I will hope along with you - may tysabri do good things for you. I have my 7th infusion on Monday. It will take a couple months before you feel the difference.
Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!
Well, MS neuro called today, and said no more Tysabri. I have had 5 infusions so far, and unfortunately have been dealing with an awful vocal box issue(s). From having my immune system lowered, I developed a terrible problem with my vocal chords. It was so bad when they 1st looked, they had a hard time differentiating what was going on. There was thrush, ulcers. lesions and huge amounts of swelling. I have not had ANY voice for over 3 weeks! I was also not allowed to try to talk either.
I'm still kind of on the fence with this. I read the Tysabri diaries on the MS resources site (UK), and found them honest and encouraging. They weren't all super positive, and one woman even had a bed reaction the very first time. Others found it was the best thing since sliced bread, and were able to give up their canes, crutches, etc. Just updating...
Hi guys, just to let you know, that I am in another relapse. Started the steroids this morniing, and I haave a sinus infection. grrrrrrrrrrrrrr I do have good news as far as my neuro's.... I got upset and talked to my locom at the GP's office this morning, and he said, GET TO VANCOUVER............ so, next week, on the 22nd, I am going back to UBC's Clinic.... and hoping to get some answers ..... Is it common to get HIVES in a hot bath after you start the steroids?
I did what most do. With my last relapse I googled all my symptoms and came up with MS. I was fortunate in that my diagnosis was confirmed by 3 neurologists (2 of them MS specialists) within about 10 weeks. 10 weeks is a nano second when it comes to the MS diagnostic journey many experience. One thing you may have learned in your travels is that MS is different for all of us. If you ask 100 people with MS to tell their stories you will hear 100 different stories.
I don't think that Tysabri can stop a relapse already there but may help you from having a relapse in the future. My story was I had been on Rebif and monthly (every three or four weeks as needed) monthly steroids. After a year my body could no longer handle the steroids. So I took five rounds of Acthar Gel. Three weeks later I had my first infusion of Tysabri. Two days later I was in the hospital with one of my worse relapses. I was released after thirty days.
So I went to my first MS appointment since being diagnosed last month in relapse. We discussed medication options and decided that the orals are not a good choice for me because of previous medical problems( ulcers and family history of sudden cardiac death) He says that he feels my MS is too aggressive to start with injectables, 5 months ago I was healthy working 12 hours a day as a ER nurse and hiking 8 miles at a time and going to the gym 3 days a week.
//tinyurl.
I could not take the interferons for medical reasons so my MS neuro suggested Tysabri. He has used it since it first came on the market and said out of the 88 patients he has treated personally, only one person had problems. That patient was given plasmapherisis and the neuro side effects stopped. I go to a different MS Center for my Tysabri infusions where they have a TOUCH program in place. I see a NP or MD every infusion.
I share this because it is too easy to call things a relapse when it might be a pseudo relapse instead. Only time will tell which one this is.
We feel the danger of the MS going crazy if I went off the Tysabri is a higher risk at this point. I feel OK on the Tysabri. I've continued to have some issues, and had some new ones come up since I've started, but, again, my neuro and I both feel it would be a much worse situation if I wasn't on it. I have had side effects from the Tysabri and it's effects on my immune system, and continue to do so. I have had one new brain lesion come up since I started.
Ess - the real relapse versus the pseudo-relapse comes up a lot. If the MS symptoms go away immediately with the beginning of the antibiotics, then I guess you could call it a speudo-exasperation, but if the symptoms linger beyond that you would have to call it a real one, by the definiton of relapse. I know some neuros use the terms differently and, in the end, I guess it doesn't matter. If the symptoms last more than a day or two, I think they should be considered part of a real relapse.
due for my fifth infusion this month. I no longer feel at the point of going into a relapse. Tysabri, I do believe is keeping things under control. Your neuro is right in going after it with aggression. Spinal lesions can put you in a wheelchair for life. Listen to this doctor. He has your best interest at heart. As always, my opinion only.
We had agreed prior to going on it that if for some reason I need to come off Gilenya, that Tysabri would be the last stop on this MS DMD train. I am not ready for that last stop and am perfectly fine sticking with G as long as possible. Thanks again to all of you for your kindness.
One thing I have noticed is that Tysabri is normally prescribed to patients with either relapse/remitting MS or those with rapidly evolving relapse/remitting MS -to try and halt or slow down the development of the disease - but from what I can remember you are now secondary progressive? Perhaps as you have only just switched to secondary progressive the neurologist feels that you can still get some benefits from it.
He asked me whether I was interested in being in the Tysabri study. I am only 37 and have only had one relapse. I know I will be deciding on a treatment and not sure what direction to go. This neuro is big in research and he spent a lot of time talking with me about MS. He mentioned a JC Virus and took my blood to look for it. If I don't, I would be a good candidate for Tysabri. It has 67% reduction in relapses but also risks getting PML.
I previously posted that I had my 3rd relapse in less than 5 months. Sensory involvment first 2 times. Came home from work last monday and my speech was slurred and by tuesday I lost the power in my legs. Had IV steriods for 3 days and a repeat MRI to see if we should switch to tysabri (currently on copaxone). On MRI; high signal lesions in all the same places as before (in many) but a new increased signal of intensity in medulla oblongota (is this considered a new lesion?
Can someone describe the ms hug to me? How does it feel? Does it go all the way around or can it just be in one spot. Please let me know and thanks.
I do have ongoing, permanent symptoms. I have also been receiving Tysabri infusions since my last relapse. Has my MS stopped progressing, or has my relapse rate simply been reduced? Inquiring minds want to know!
Some promise better results or fewer side effects but for now they aren't even an option. One option that does come to mind is Tysabri. If your MS has been on an aggressive binge you might want to investigate if using it is an option. It is given intravenously at an infusion center once a month. Several members here use it. It is a safer drug to use than in years past because of recent developments in testing and screening to evaluate each person's risk factor for use.
For the most part my MS is also invisible to others. I credit the DMD I'm taking (Tysabri) with helping it stay that way. MS is a life sentance at the moment. I think it's my job to do everything I can to combat it!
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