tysabri problems

I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?

He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!

The third, fourth, fifth and sixth infusion all went well. I still had some problems just not as bad as before the Tysabri. After the sixth infusion I had my first post-Tysabri MRI. Now remember, I have had MS since 1995 and have had MRI's every year sometimes twice a year....and each one got worse and worse. My newest MRI showed improvement! The Tysabri was working!! I was in so much shock I couldn't believe it.

m sorry you are having new worsening problems. Have you alerted your doctor? This may be a relapse for you and a course of steroids may help. Or, was the Tysabri suggested because the doc feels you may need a switch in meds? We do have Tysabri users on our forum, and I'll find a discussion about it and post the link here. It would be great if the Tysabri would indeed help you get some strength back. Welcome to our forum, and hope you stick around.

Hi BL- Welcome to Our Merry Band :-) I was diagnosed 2 years ago, at age 51, with SPMS. My first, and up until a week ago my only, DMD was Tysabri. When I was diagnosed we were able to connect seemingly random events over the previous 20 years. What seemed completely unrelated was related. All were symptoms of MS. Because I'd had MS for so long my doc thought I was out of reach of the injectables. At the time the orals were just starting to come on the market.

When dx'd? 10/2011 Other treatments prior to Tysabri? None How long have you been on Tysabri? 2 Infusions to date Do you feel it is helping? No big improvement, but no further deterioration. I suppose that's Tysabri's job :-) Have you had any side effects? No side effects of any kind. I have been tested for the JC virus, but don;t officially know that I'm negative.

It is a drug with the potential for serious problems, including once it is in your system it cannot be removed. Even Tysabri can be removed if it causes an adverse reaction. The trial results have been impressive. Another form of Lemtrada - Campath - has been used as a chemo drug for years. I really get heartburn about how the mfg has jacked up the cost of this drug for MS use and has continued to give it to the cancer patients for FREE.

My MS doc always gives a small dose of Solumedrol, which is much larger than a usual prednisone dose, to his new Tysabri patients. They get the IVSM in the first hour. Then they get the Tysabri in the next hour. His experience says that the mini-dose of IVSM helps the Tysabri get to work faster by cutting any inflammation in our system. He does that for the first three Tysabri doses when just beginning this therapy. I hope you are less itchy today and can reach your doctor in the morning.

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.

I had my 5th Tysabri improvement last Sunday. Since then I have noticed a major improvement in the way my legs feel and work. I mean a major improvement. My legs have not felt this good in a very long time. I have also been exercising regularly for the last month and have lost a bunch of weight. I'm trying to determine to what I can attribute the improvement. Is it the Ty infusion? The exercise? the weight loss? I'm kinda hoping it's the Tysabri.

Hi Miche Sorry your having problems. Tysabri is a step above Copaxone,Avonex, & Tecfidera in terms of strength. All of them are more designed to stop the forward progress of MS rather than repair damage already done. What does you neuro have to say?

I've been on Tysabri since 2012 and tested + before I started. Some months I feel better, some I don't.

There is an alogirthm for the chances of contracting PML while on tysabri. I believe it is on the tysabri website among other places. I will see if I can find it for you and report back.

OK guys I need info..... anybody here on Tysabri? Anybody been on it previously? Any first hand input is helpful, as well as any info in general. My neuro tossed it out at the appt today - COMPLETELY blew me out of the water. Never saw it coming. The Rebif makes me sick and he's concerned that things keep advancing and I've never really had the elusive remission... :) He explained alot about Tysabri - truth vs hype.

Now, based on the last MRI, he has officially diagnosed me and is recommending that I go on Tysabri infusions. From what I can tell on this forum, it seems like he's hitting an ant with a sledgehammer. It seems very unusual for people to be prescribed Tysabri right off the bat. I am very confused as to what drug to go on, if any. His first choice for me is Tysabri, followed by Gilenya, followed by Copoxone.

I just heard a local neuro talk about using doses of steroids to control MS problems during the washout period (usually about 3 months) between tysabri and gilenya. Your final statement to Sarah is so wrong in so many ways - the doctor who says you don't treat a progressive disease needs to lose the medical license and get into a different line of work. There is definitely treatment for all of us...

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!

I'm signed up to start Tysabri in the next couple weeks. My doctor really recommended it as he thinks it would be a good option for me. It's just kind of difficult for me to wrap my mind around because it seems like it's used more as a last resort rather than a first line of defense. This will be my first DMD, and I'm a little nervous. Is anyone else using this as a first DMD? What kind of side effects can I expect?

Hi, well first of all my neuro. is not sure that I have RRMS, we think it is SPMS only, and we don't really think it was doing alot for me. It made me really depressed and I had alot of infection's...strep throat 2 time's, UTI's, canker sores...And I never had those problems before. I have been off Tysabri for almost 2 month's now, the dr. said it take's awhile to get out of your system but I think I already feel stronger. But, we will see?

m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.

They found out the reason people contracted PML was because they were taking Avonex/and the other MS medications with Tysabri. I think the Tysabri has given me a second chance at helping slow my disease progress, but with out it I would be on no MS medications to slow the disease. I did alot of research before I decided to start the medication and the one resource that helped me make my decision was reading the Tysabri diaries on line. www.msrc.co.uk/index.cfm?

d caution about letting that be the deciding factor in turning to a drug with the potential to cause much bigger problems. Tysabri suppresses the immune system in general where Copaxone merely modifies it in a way specific to MS inflammation. This might be more significant for an person of your age if your educational environment or social life brings you into frequent contact with large, crowded or public gatherings.

My sister had her first Tysabri infusion today and all went well! I was so anxious for her, but for no reason--she sounded great. She had to start the Tysabri because she was getting this terrible-looking, itchy rash which hurt which her neuro (actually our neuro) had said was probably a reaction to her Rebif. She also was progressing in her disease.

Tysabri problems

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