tysabri iv

Okay, I've had MS for 13 years. I was just taken off Tysabri in July, I was on that for almost 5 years. I now have to go on Gylena in January, but before I start the new drug...I have to do 6 months of iv steroids. 3 days every month with NO taper! I have just finished my second round...and I'm ready to through in the towel. The side affects of the steroids are at this point almost not worth doing. They are trying to prevent a relapse since I am not on any MS therapy.

Hello, My doctor wants to put a port in for my Tysabri infusions. Does anyone have a port? Any downside to having a port? It is becoming more difficult to get an IV started because my veins do not hold up even though they look good. Thanks!

Does anyone have information on Tysabri? I haven't been told much on it, although I have been told by 3 different doctors I should take a look at it. I would like to know what others on it experience or experienced while on it?

this is the first time they have let me do my IV steroids from home, soooooo much nicer.. this makes my third attack in 6 months so my neuro is suggesting we switch form the crab drugs to tysibri (spelling). little concerned about the brain infection people have suffered in the passed but understand chances are much less today. It would be nice to only have one shot a month.2 more days of IV steroids and on 16 days of prednizone {spellin}.lets hope the side effects stay at a minimum.

Hi T- Did you have any reaction to the first 11 Tysabri infusions? I=Did you also have the IV Solumedrol each time? Generally speaking things like rashes are not associated with MS. I wonder of you had some reaction to the steroids.

Last week I started my 3rd significant relapse this year, my specialist nurse is now talking about Tysabri. I was on Rebif for about 15 months and wasnt getting on with the side effects so I switched to Copaxone 6 weeks ago, which I'm quite happy with. I looked up Tysabri when I got home and all I got was all the bad news about the PML patients. They say that theres a 1/1000 chance of getting it, that seems quite high to me.

I was dx'd with MS years ago today went for an IV infusion of steriods and mentioned that after the last round all of my pain was gone. This nurse suggested that I might have RA because steriod treatment sometimes also works for that. Now my doc's have run MRI's thinking it might be a disk problem but no there is nothing wrong with my disk but the doc never has a clue about the pain and all the pain meds I have tried don't work. I have major problems with all meds.

well, I was expecting this one to be effortless but failed to meet my expectations. The nurse almost missed the loomingly large IV site and then pushed the Decadron too fast, giving me weird symptoms, and then I got a headache from the Tysabri (perhaps because the Decadron was pushed too fast?) and was over 12 hrs shaking that one, but eventually shook it with a pharmaceutical cocktail.

Know others have worse problems, but I'd just love a vacation without Tysabri side effects. I diligently took my Prilosec for the 5 days, and wouldn't you know, on the 6th day, I was back in ER that night, hooked up to IV and fluids. They had to give me a bolus bag before they could draw blood for the labs, guess I was dehydrated. I love it when they make regular rounds with WARMED blankets!

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.

I'm just curious .... For any of you who are on Tysabri, I was wondering if your neuros had changed their treatment plans or recommendations because of all the new PML cases and the acknowledgement by Biogen and the FDA that risk goes up after 24 months. I hear some are now pulling their patients at 18 or 24 months. I saw my neuro yesterday, and we discussed it in detail .... we are staying the course at this point, which made me very happy. (I go for #18 in a couple of weeks.

This was an old post, but it took me several months to get used to Tysabri. My neuro used Decadron IV at first and then we went to PO for longer effect in the body. Don't cancel but do let your neuro know asap that you are having problems.

I did fine until about 2 months ago-I have no feeling in my right hand or fingertips at all ( I can feel poking and temperature but it has not helped since I am a labor and delivery nurse-I am unable to start an IV or check a cervix) so as you can understand it is really messing with my mind. I am also really really fatigued and just plain do not feel very good. My nerologist is testing me for neutralizing antibodies and is considering putting me on Tysabri-Scary!

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?) and NO enhancing lesions..... So I qualify for tysabri without an enhancing lesion?

Hi Kat - I will get my 11th infusion in about 10 days. I have had no issues of any kind in conjunction with Tysabri. From the follow up MRI's I've had Tysabri seems to be doing the trick. No new lesions or relapses since I started. You will be tested for the JC virus prior to starting.

This person was previously on Tysabri for 3 years, and was JC positive. There is no information yet as to how long of a wash out period they had before starting Gilenya, how long they were on Gilenya before getting PML, what kind of symptoms they were experiencing, or any info yet about the condition of the patient.

I'll start it off... I was diagnosed in Feb. 2008 Was on Rebif for 6 months prior to Tysabri. I have been on Tysabri since Oct. 2008 - will get infusion #37 next week. Both my neuro and I do feel it is helping. I still continue to have issues related to MS, and some have started while I've been on Tysabri, but we feel it has definitely slowed the rapid downhill slide I was on prior to starting it.

I went to the neurologist today and I am definitely having a flare. I have three new, active lesions on my brain and although they didn't do my spine, she thinks I have a new one on the left between C2-C3 because I'm having issues on my right side now too. I've only had three Tysabri infusions so there's a good possibility I wasn't "fully protected" yet. She said I have very active MS so this is still my best option right now.

Had my first Tysabri infusion this morning! I wasn't sure it was ever going to happen, but it finally did! The nurse had me take Tylenol and Benadryl. Is that something you have to continue to do every time? I don't mind, just wondering. So far I'm not having any issues, but it might be because I took the meds.

I just went to the neurologist yesterday and he didn't tell me anything good. I was diagnosed in August of this year and I have been on Copaxone for two months. I just recently started having tingling in my back and some numbness in my bottom lip. I thought I might be having another attack. The neurologist said he does think it's another attack and that it is probably effecting my brain stem because of my symptoms.

I would not even have known I was getting anything if I had not been totally bored and watching the IV bag! I also met a guy who has been on Tysabri since 2006. So far I have no side effects at all from it. I was surprised as they were going down the list and hang a vial of Benadryl with your bag just in case. I am fighting a bout of bronchitis that I need to attend to today as soon as I have my dose of caffeine. Its fantastic to know its all I have to do for another 28 days!

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