Tysabri ms relapse

Common Questions and Answers about Tysabri ms relapse


Avatar n tn 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.
470613 tn?1207316271 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.
Avatar f tn I was on copaxone for a year before and had four relapses in the first year. My specialist switched me to tysabri and I have been relapse free. So it is doing what it is supposed to do. I have read of people having great success in terms of improved mobility etc. I didn't notice much difference, but I can certainly tell if I missed my infusion due to antibiotics etc.
1115136 tn?1258782076 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.
1168718 tn?1464987135 This is question to those who have taken, or did take, or may be thinking of taking Tysabri ??? My Neuro has suggested it to us, we have failed 3 other DMD'S , due to reaction. I have been looking into it, and for some reason today I FEEL SCARED to Death. It is a way off though, the JCV test has been done, and Jul 15 I to have an MRI with Gab.... to see if I am a contender for this drug.
Avatar m tn 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.
2063887 tn?1337833346 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!
Avatar f tn This eventually resolved with the help of Soulmedrol and time. This was my 3rd relapse in a year and a half, so my doc started me on Tysabri in the fall. I have had 5 infusions so far. I didn't think I had any major side effects from it besides the fatigue the day of and day after infusion. Recently, since Christmas-wish, my old relapse symptoms have come back with a vengeance, but have spread.
10624661 tn?1414904229 Has anyone taking tysabri having any side effects such as jerking of the hands and legs? And extreme weakness of he legs?
Avatar f tn 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.
1950519 tn?1324521793 A recent study showed that people who go off Tysabri will most probably experience a serious relapse in their MS.
2047903 tn?1330191149 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.
1896537 tn?1381903609 //www.nationalmssociety.org/Treating-MS/Medications/Tysabri-%C2%AE Hopefully someone who's on Tysabri will chine in... Cheers.....
645390 tn?1338558977 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.
1337734 tn?1336238191 P I know it's not a good choice, but there isn't anything better right now (or even anything as good). If your ms isn't bad enough to need the Tysabri, and Gelenia is enough, I would suggest going that route, but if Gelenia isn't enough, give some serious thought to Tysabri, and I hope for the best for you, either way.
1225331 tn?1333369369 All within my first year of diagnosis. Have been on tysabri since Feb and haven't had a relapse since. I truly believe if I wwas allowed to sstart on it as a first line treatment I would not be permanently disabled today. It is worth the risks and there is a reason why it costs 4500$ a pop. Liquid gold. Good luck with whatever is best for you.
738075 tn?1330579444 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...
Avatar f tn 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.
1168718 tn?1464987135 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?
1842804 tn?1319759911 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.
5993128 tn?1384751403 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.
572651 tn?1333939396 //tinyurl.
294425 tn?1288531995 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.
Avatar f tn relapse/flair, whatever. It was 9 days of no fun. They even refused my Tysabri last week because I had a fever of 99.0. Am still on antibiotics for a UTI that I didn't know I had, which I think was really cystitis. Anyway, I have 3 more days of Ciptro and Tysabri is tomorrow. Will make sure I take aspirin to keep any fever down. I've been 6 weeks off Tysabri now.
Avatar f tn Hi and welcome to our little MS community, According to the MS trust Tysabri has been approved for use on the NHS since 2007, it is often prescribed in the UK when someone's MS is highly active though and the UK guidelines on paper are more restricted, so not exactly the same flexibility as here in Oz.
572651 tn?1333939396 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.
382218 tn?1341185087 Anyway just wondering if you'd typically have a UTI test in these circumstances and if so and if positive, does treating the infection have any effect on symptoms of relapse. As for my DMD dilemma, this latest relapse seems to solidify my need to move from Copaxone to something else, especially given all my new lesions discovered earlier this year. Based on discussion with the nurse, it seems Gilenya is the only one they'd support.
Avatar f tn 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.
147426 tn?1317269232 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.